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crisishauntline · 1 year

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Today was long. It started off very stupidly with only four hours of sleep due to my inexplicable decision to stay up until 5am playing Civ 6. Then I called out from work so I could sleep a little more before going to Oakland to accompany L to her ultrasound appointment. She’s been increasingly anxious about the pain and what might be causing it, and about hospitals and doctors overall, which is more than valid given her history. But I’ve been able to support her in facing those fears so far, and I trust that we’ll make it to the other side.

Today was a bit scary though. They wouldn’t let me be in the room with her like they did last time when it was just a Pap smear, and the technician also couldn’t tell her anything about her results or diagnosis at the time. They posted the results on her patient portal soon after we left, but the notes were really jargon-y and hard to understand. Since she can’t talk to her doctor about them until her doctor calls her, we called my dad and asked him to translate. It turns out she has a mass a bit larger than a baseball pressing her left ovary (the only one she has left), but they won’t be able to tell what exactly it is without doing a laparoscopy/biopsy. He did convey the good news that it’s not blocking any important blood vessels or twisting, and that it’s really unlikely to be cancer given her age. Hearing that helped her anxiety (and mine) a lot. Still, a baseball-sized tumor or cyst is fucking up her life and she will likely need some kind of surgery to get it removed, so the worries and stress will continue for a while longer.

She did really well breathing though the panic today. I can see the toll it takes on her energy, but I can also tell that I’m helping her stay strong. I checked in with her again before she went to bed to see if there was a post-sundown nosedive, but aside from some teariness she sounded positive.

I was glad to hear her ground herself in two truths:

1) She’s not crazy and does know when something is wrong and unbearable in her own body

2) This process will eventually end with her feeling better.

I told her I was proud to have witnessed her harnessing her bravery and self-advocacy, and affirmed her for unlearning her default response to suffering—to grin and bear it alone and in silence. I have seen her grow so much when it comes to taking her own needs and pain seriously. I love and admire her so much.

Yesterday we played We’re Not Really Strangers and came to the question “In what ways, big or small, have I changed your worldview?” I really struggled to think of a single thing, and was very dissatisfied with my eventual answer. She was clearly disappointed by it too. I felt so embarrassed that I couldn’t even articulate the core thesis of her show, which I’ve seen now at least four times. All I could manage was a barely coherent and extremely vague string of fragments, some merely describing what her job is and some waxing poetic/woo-woo about a general sense of wonder and Interconnectedness. She said it made her feel she must be missing something from her show for me to not have even remembered her thesis, let alone take it into my worldview. She even tried to re-explain it to me—that humans and our observations of the universe through science are not separate from the universe; we are how the universe thinks about learns about itself. That sentence struck me as fascinating and very poetic, but to be honest I still felt confused about what it actually means to her, or should mean to me. I also struggled to remember her saying anything close to that in the show but mostly remember it being straightforward facts with a concluding reflection on how astronomy is for everyone—“all you need is a night sky,” or something to that effect. So maybe that larger point is missing. Or maybe I haven’t been listening right.

I’ve continued racking my brain trying to come up with the “right” answer to the game’s question. One that at least makes her feel seen in some way, even if not in this most important one. Today I tried articulating a different idea: her ability to notice, seek out, love, and find meaning in the “little weirds” of existence, no matter what. When I am depressed I so easily slip into distorted, dissociative negative generalizations about what existence is and what it has to offer. I forget that life can always surprise me. Even when it’s impossible to find or feel joy, there are still countless strange and fascinating little facts, experiences, and works of art to remind you that you don’t actually know everything about life and therefore must re-examine your judgement that life is pointless. Or you may be right about the pointlessness, but wrong to discount the richness of pointless existence. So you may as well stick around to learn and be surprised some more. Some prime illustrations of this trait:

1) The tumblr status she made when we were broken up (“My ex-girlfriend broke my heart so now I’m devoting my life to becoming an eccentric kook").

2) Her readily responding to my long, overthought text about how we could spend time together again by suggesting we make crop circles.

I’m not sure if this answer made her feel seen in the way she wanted. I hoped to offset her disappointment from last night, but I think even if this second answer were perfect on its own, the fact that the first one is still unresolved leaves a melancholy taste in the mouth. Oh well. I still meant it and think it’s a at least a decent answer.

Her answer to the question, for the record, was how I had challenged her to broaden her mindset about religion and spirituality. And hey, I worked hard on that one so I was happy to hear it. On the other hand, I don’t actually feel the need to change her worldview. I told her I like the way she thinks and enjoy when she shares it with me. I just want her to not automatically hate others’ worldviews that include religion/spirituality. But I suppose that is still a change in worldview, if not in belief.

Anyway, it’s late and I’m exhausted. There’s one last thing I want to add though: I made a drawing of her that I’m actually proud of. Admittedly, this is what I did all yesterday instead of my job, which is not ideal. But I really enjoyed making it and surprising myself with a much better-than-expected result!

#personal #love life

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fleurdulys · 2 years

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anyway life update: i’ve had emergency gallbladder removal surgery on tuesday

#personal #it was so weird though and hard to detect what was wrong with me #cause i had horrible pain in my left side instead of the right one #and doctors told me i had ibs then they told me i had kidney issues #then they thought i had diverticulitis or colon cancer #anyway i have none of those not even an ulcer #but my gallbladder was full of stones and infected like hell #so anyway thanks to my surgeon she was the best #she managed to take out all of it through laparoscopy #so now i am chilling at home #anyway everyone was so shocked cause i had the pain in my left side like a weirdo

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ms-hells-bells · 3 years

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so....today was a mixed bag.

had my hospital appointment. she said “how about we insert the mirena now? we have laughing gas, it can be done in 5 minutes”. i agreed because setting up another appointment just for that would be annoying since they already needed to put me on the waiting list for a laparoscopy. the idea was that if i got the mirena first and it worked well, then i could cancel the surgery if i wanted, since it would be unnecessary risk.

i have never had laughing gas before. i know the effects can wildly vary. for me? it just made my head light and hot, and fuck up my emotions. not a single bit of pain reduction. she didn’t even get to insert the mirena in. i managed to get through the speculum insertion, although it hurt so bad, i had to stop her a few times. but then when she inserted the little rod in my cervix to measure the length of my uterus (which they have to do before they put it in), it was so excruciating that i was just uncontrollably sobbing, and had to tell her to stop completely. so, pretty traumatising.

i had a female doctor, a female nurse, and a female med student that i consented to observe, and all of them were lovely, gentle, and comforting. the nurse held my hand and hugged me while i was crying, the doctor immediately stopped when i said to and was completely empathetic, and the med student comforted me with jokes. definitely don’t blame any of them, they did their best, but i’m just one of those people that can’t get it conscious, i guess.

but then we get to at least some good news. she said “okay, i will book you an appointment to get the iud under general anaesthetic as soon as i can. you don’t have to be on a waiting list since it only takes 5 minutes. and then after i filled out some forms i needed, she called me back and said she’s technically not supposed to do this, but in her schedule, she found 60 minutes just TWELVE DAYS from now, that she’s not only going to do the mirena, but also do the laparoscopy. you are supposed to go on a waiting list, and some women end up waiting for 6-9 months, but because she felt so bad for me and found that chunk of time freed up in her schedule, she managed to convince the hospital to slip me in for surgery twelve days from now, instead of the likely at least three months for the laparoscopy.

my uterus and cervix are currently STILL sore, like 3 and a half hours later, finally getting home (because i had a meeting after that), i feel physically like shit, and also i think i now have trauma regarding anything up my vagina, which is gonna make pap smears in a few years very difficult considering how much just the speculum hurt (but the doctor now considers me to have vaginismus, so that would be on my chart and something i can mention, and hopefully get according measures taken to make it comfortable), but i did also get a trans vaginal ultrasound 8 months ago just fine, so who knows.

fucking OUCH though. i was crying so hard while semi-high.

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plannedparenthood · 4 years

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Stories From People Who've Received Care Through Title X

"People have been rallying, contacting their representatives, and sharing their stories about what Title X and birth control means to them. Congress needs to listen to the people and #ProtectX.

As the nation's program for affordable birth control comes under attack, we’re sharing the voices of people who’ve received care through Title X. Here are their stories.

Karina, Arizona

“I walked into a Planned Parenthood health center outside of Phoenix, Arizona with $20 in my bank account. I was scared, nervous...and so, so overwhelmed. My period was late, and I had spent days wondering how I'd ever juggle a baby and college. Planned Parenthood was there for me. Title X was there for me. Thanks to Title X — the nation's program for affordable birth control and reproductive health care — and a wonderful, kind provider at my Planned Parenthood health center, I was able to get a pregnancy test and find the right birth control for my body. I could stop worrying, and focus on my future.

Without Title X, I would have had literally nowhere to go. And that’s why it's so, so important that all of us throw our support behind Planned Parenthood in this moment. Health care should be a human right — something we never have to stress about, scrounge for, or bargain over. That's not our reality, though.

There's a huge divide between who can get health care in this country, and who has to go without — and it's people without means, people of color, and the immigrant community who suffer. People like me. Title X levels the playing field by making basic health care accessible for 4 million people. That's 4 million people who can go to work, study, and care for their families without worrying about how they'll afford their next Pap test or breast cancer screening.”

Emma, Washington

“It was the week of my 22nd birthday that my OBGYN recommended to perform a laparoscopy to diagnose or rule out endometriosis. After the procedure, my doctor informed me that I do have endometriosis, a common health problem that causes chronic pain, and if left untreated could lead to infertility. At this time, I was working a minimum wage job in customer service and could not afford to pay for health insurance or doctor’s visits out of pocket, so I went to my local Planned Parenthood health center.

The woman at the front desk gave me a form to fill out before my appointment and told me not to worry, they would take care of me, with the amount of money I made yearly, I qualified to pay for services on a sliding scale. I met with a health care provider that day and she went over my medical history I brought from my OBGYN and we decided on a plan: I would get the Depo-Provera shot to minimize and hopefully stop my cycle. During a time when I wasn’t sure if I would be able to even have children in the future, or exactly how to manage this new disease, the last thing I wanted to think about was the cost and how to navigate the system. Title X was critical to me finding care and managing my disease. Without it, I don't know where I would be today.”

Ixya, West Virginia

“As a university student, planning for my future is extremely important. As a Latina, the topic of sexual and reproductive health does not come up and can sometimes be dangerous to talk about. I want to make sure I am prepared, safe, and do not have a surprise pregnancy, so I decided I wanted to get an IUD. Unfortunately, if my parents found out I used their insurance to get an IUD I'm afraid they'll make me leave WVU and make me go back home, which is why utilizing Title X helped me get affordable birth control without risking my relationship with my family and risking my education.”

Ray, Oregon

“I had moved to Eugene, Oregon for school and needed to get tested as well as start a new form of birth control. I went to the Title X funded facility off Franklin Blvd and received the care I needed — at no out of pocket cost. Inspired by this new wave of access when it came to sexual health, I decided to get involved. I was still at a point in my life where I felt ashamed and disgusted by my sexual history — unable to overcome the taunting as a kid and the self doubt as a young adult.

When I started out I was doing the Health Center Advocacy Program, collecting stories from my community. And I as I asked, complete strangers, if they had a story to share, I discovered that I was far from alone in my experience. I was not the only one that was raised in this culture of shame and silence. I knew that the only way to break this stigma — was to break that silence. As I spent the rest of my collegiate career sharing my story, expanding resources on campus and fostering a culture of affirmation, I couldn’t help but look back at that 16 year old girl and see how far I have come. And that’s exactly what Planned Parenthood does for their patients. Throughout my life Planned Parenthood has given me information and resources to address my mental and physical health — but the most important thing they have done is help me find my voice.”

Elizabeth, Alaska

“I am one of the millions of Americans and thousands of Alaskans who rely on Title X for BASIC health care: pap smears, cancer screenings, and STI testing. I have traveled a lot and lived in many places, but no matter where I go, Title X and Planned Parenthood are always there. Because of Title X, I’ve never had to worry about whether I could afford the basic care I need. And in times when I’ve not had insurance, I’ve been able to pay what I could afford. Because of Title X and Planned Parenthood, when a Pap test came back abnormal a few years ago, I didn’t have to worry. Planned Parenthood took care of me, and got me the follow-up care that I needed. Today, I’m grateful to have insurance. And I’m grateful that I can continue going to Planned Parenthood for high quality care. Health care is a human right, but too many policymakers treat it like a luxury. Title X is one of the few positive cornerstones of our American healthcare system. And it works.”

#Protect X #title x #gag rule #no gag rule #trump administration #patient stories

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cooking-with-endo · 4 years

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My Experience: A Brief Introduction

My endometriosis journey has become more difficult over the last year. I have had increasingly painful periods for many years. I did not think much of it, as I figured that as we get older our periods might not be as light and easy as they were when we first get them. I got mine for the first time when I was a wee 11 years old. I fondly remember bleeding all over the seat in my 6th grade history class one day...

I had tried various different birth control methods, not being able to stick with any one. I have no idea if one of them helped with endo. I’ve done the pill off and on several times, Nexplanon for about a year, and I had a hormonal IUD. I’d had sciatic nerve pain, lower back pain, shooting pains in my ovaries if I exercised too long, terrible period cramps, and digestive issues, but I never put any of these things together until a few months ago.

One Thursday this past October, I was sitting at my favorite coffee shop studying for the LSAT when an absolutely horrific pain came over me on my left side. It was like nerve pain, muscle soreness, period cramp-y, just all around awful. I got so irritable because of it and all I wanted to do was take a hot bath but I had to get ready to get to work. I was working as a case manager at a homeless shelter at the time and I worked 1:30pm-10pm five days a week. The whole night at work was terrible. No amount of ibuprofen could fix what was going on. I had had pain in those areas before but not at all like this. Later that night I couldn’t even turn over in bed without being in agony.

The next day my partner convinced me to call out of work. I really could not move. I decided to spend the day on the couch and just rest and do some research. I had my friend bring me some powerful edibles so I could just sleep through the day and hopefully get to work the next day.

My research led me to believe I had an ovarian cyst. Now it was Saturday and the pain was getting worse. I went to urgent care where they did a transvaginal ultrasound - only to have inconclusive results. My ultrasound tech was an angel though and we bonded over vagina pains. They thought my IUD might have migrated and been brushing up against the inside of my uterus. That sounded plausible. So I went home and booked an appointment for Monday morning at Planned Parenthood to have my IUD removed. I did not take my time with decision making, I just wanted a quick fix for my pain.

The pain never went away. I had a follow up appointment at my PCP’s office, but not with my PCP. It was a male doctor I’d never met. He actually was the one who suggested this could be endometriosis. I was like, oh I guess that would make sense? I was also shocked to be taken seriously about something like this by a male doctor, so yay! I did more research and ultimately agreed with him. My PCP agreed with him too.

Thus my exploratory journey of what-the-fuck-to-do-about-this officially began. The pain has only worsened with time since the IUD was removed, so it has become apparent to me several months later that the IUD was definitely not the issue, and it probably was not an issue at all.

I saw a shitty nurse midwife in January who basically brushed off everything I said to her. She took me off my combined oral contraceptive, put me back on the progestin only pill, and referred me to pelvic floor physical therapy. I opted to try it, but also decided to never go back to see her again.

I started doing pelvic floor physical therapy in February which was sort of helpful and I really loved my physical therapist. Then COVID-19 happened... so that was put on pause. We both agreed that it wasn’t a great long-term solution for me anyway.

Also in February, I started noticing my birth control was causing awful mood swings. I have bipolar disorder II so I am familiar with mood imbalances, but this felt different. I was angry all day every day, and while working at a homeless shelter this is not really a good thing to have happen. I stopped taking it around Valentine’s Day and had the WORST period one could imagine, but my mood improved which was really all I wanted. I needed to prioritize getting through my work day and not wanting to scream at my clients or coworkers.

After deciding to come off birth control, I decided to find a new OBGYN to talk about pain management with. The one I found for myself is incredible and I am very glad I opted to see her. She told me she would do whatever I wanted (get a new IUD, try Lupron, or get a laparoscopy) and I eventually decided to go for a laparoscopy. It was supposed to be April 29, and that obviously did not happen thanks to COVID-19.

Fast forward to today, I am spending a lot more time than usual on self-care and self-nurturing. For me, this looks like really seriously paying attention to my body and my symptoms. This pandemic has allowed me to slow down and spend more time with myself. I am learning how to (attempt to) manage my endo pain via diet changes and exercise, as well as adapt my lifestyle.

I have spent time recently looking into what I should be eating and what things I should be avoiding. I have never had a food allergy or any dietary restrictions, so this is completely new to me. I have developed what is most likely IBS and a lactose intolerance. Avoiding gluten, red meat, alcohol, lactose, etc. is a major lifestyle change but every day I am trying harder to be better to my body.

I have found social media to be extremely helpful during this journey. There is no better way to learn about endo or feel less alone than to hear other people’s stories. I am going to use this page to share more about my experience.

It is important to be accessible and realistic with sharing cooking tips or recipes. I don’t use elaborate recipes, hard to find ingredients, or cook many things that require standing for long periods of time. I also don’t want to dirty too many dishes because nothing irritates my lower back pain like doing the god damn dishes. I am learning how to utilize the crock pot, meal plan, and meal prep better. I am also using this to hold myself accountable for being more gentle with myself. It is okay to eat frozen pizza three days in a row if that’s all I can muster. It’s okay to indulge in gluten and alcohol if I feel like that’s what I need. I am a fat person and I am not here for anything related to weight loss. When possible, cooking and eating should be an enjoyable experience. The ultimate goal is just to get through the day.

If you have read this entire post, I thank you very much. Most of my other posts will be much, much shorter and include more interesting things - like gluten free cookie recipes.

Please send me your recipes as well! I want to hear from you.

Emma

#endometriosis #chronic pain #endo #cooking at home #disability #accessibility #body positivity #riots not diets

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thoughtrap · 5 years

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Early Motherhood

I am back at the cafe, sipping my cold coffee and writing this note. Looking out of the window I see the traffic rushing past me. As I look closely at the vehicles, faces of people draw my attention. I try to study the faces, look for experiences behind the emotions. After all our emotions drive us, at least that’s what I think.

My mind is trying to sort what could be the next best post for the blog. Images from the early days of motherhood linger in my head. Those days have clearly had a huge impact on my Self.

After I turned 25, I fought what feels like a long battle with Endometriosis all the way till I became pregnant at 36. Endometriosis is a debilitating condition, in which the tissues on the uterus lining also exist outside the uterus. In my case it was on both the ovaries leading to massive tumors. I had major pelvic pain and severe mood swings. Despite the condition I lived a full life, a loving relationship with my partner/spouse, hanging out with friends, travelling, partying, working as a school counsellor, conducting lectures and life skills classes, managing a home, learning contemporary dance and yoga. However, the co-morbid condition of infertility preoccupied me. I was told early on in the diagnosis of endometriosis that the condition has no cure and leads to infertility (interestingly the traditional cure to endometriosis is pregnancy!). I found a wonderful gynaecologist to help me maintain my condition without too many surgeries (I have had two laparoscopies to remove endometriotic tumors). At 35 I finally decided to stop treatment and try the good old bang-bang way to get pregnant! IVF, IUI were other options given to me but Romit and I decided to wait it out. I took some pills to help me during the period of ovulation. On a trek to the village of Tosh in Himachal Pradesh, I felt easily tired, at the same time a sense of calm descended on me. I was hopeful yet willing to accept that I might not be able to ever conceive ‘naturally’. A week after the trek, a simple method of pee on the stick and a blood test confirmed I was pregnant!!

I didn’t talk to anyone about the pregnancy. I couldn’t believe it, and decided to not talk about it till after the first sonography (ultrasound). A week later at the sonography table under the eye of my doctor who seemed more excited than me, my pregnancy was confirmed. On the screen I could only see some black and white squiggles. My mind felt uneasy. Soon enough Romit was called in and the doctor said to him “So I see twins!”. TWINS!! Romit raised his palm up and said to the doc “Alrightttt! High Five!” I was lying there numb. No smile. No instant happiness. But intense fear. And a constant “WTF!!!! I wanted ONE!”(in my head, never aloud)

After intense mental stress due to endometriosis and the struggle with infertility, the reality of positive on the pregnancy test was pretty surreal. Also I was under the grip of hormonal changes that brought with it intense nausea, something that lasted throughout the pregnancy. Looking back at my pregnancy what I most remember is the constant nausea. I spent most of the following 36 weeks 4 days in bed lying around or sitting around in a big armchair that Romit especially picked up for the pregnancy. I barely remember smiling or felling wonderful. It was much later into the pregnancy that I realised I was severely depressed. This was the most bodily emotional I had ever felt, by which I mean that even though my mind was at ease, my body felt heavy and lethargic. Emotionally I felt low and cried easily. Before this pregnancy, anytime I felt like this I had the emotional courage to analyse my feelings and use body movement like dance or yoga to conquer depressive feelings. Not this time. This time it all felt unusual. I did not feel motivated to move or exercise.

On consulting my gynecologist, I shared my worries around the twin pregnancy, she simply encouraged me to ‘take it easy’ and ‘just chill’ and ‘this happens’ and ‘just start looking for nannies’. I did not feel heard or understood. Here I am not blaming the gynecologist for her lack of empathy, I do wish she was more understanding but I also know she did her best to be there for me. Soon enough I stopped talking about my feelings of depression and intense fatique. I did not look for nannies. I read books. Watched a lot of Netflix shows. Have you seen the show- Transparent?! I binge watched that one.

In essence, my emotions felt pretty out of control. My body felt alien.

My social life came crashing down. I could not party anymore because partying means getting high, that was out of question. The constant hanging out at our home ended abruptly too.

I thought I was ready for motherhood, but the start of the process was so life altering that I felt out of control. Whenever I feel out of control I look within. I self-reflect. I spent time in silence (Apart from binge TV watching). I did a whole lot of that. And by the second trimester felt a little bit like myself. Such phases of depersonalisation, was what I was often consumed by all through the pregnancy. Then came the third trimester, the time of added worries about ‘something going wrong’ and ‘I hope I can carry them all the way’ and ‘do I really need a nanny?’

As I write I feel words have limited impact. How does one express the intensity of feelings with mere words?

Five days after completing 36 weeks of pregnancy, I was admitted for a planned delivery to one of the best hospitals (or so they say) of Bombay. It has not been easy for me to talk about my thoughts and feelings about my experience of motherhood with the fear of being judged. Whenever I did express my fears, concerns, or confusions I was told by most people something to the effect of ‘but that is how it is...just chill’ or ‘why don’t you just take it easy’ or ‘you need to enjoy this time’ or ‘you think a lot...go eat something you feel like’. Phew!! I still didn’t feel brave or chilled out or hungry. It seems now that I was constantly feeling not heard and understood. Why should that even be important to me at this stage in life which I couldn’t wait for to experience? I hope to find an answer through this task of self-reflection. But for now maybe it suffices to say I have this desire to be understood inspite of a not so perfect pregnancy, to be heard even though I possibly brought upon myself ‘negative’ thoughts, to share my unusual experiences mostly because I am not afraid of unusual, to question the media popular images of glowing expectant mothers smiling with joy or ordering their husbands to get them a mid night snack. The preconceived notions and images of pregnancies led to certain expectations that I could not live upto.

I spent most of my husband-time holding his hand and asking him to fix the million pillows I slept with. And telling him all about the stressors of the pregnancy. And binge-TV watching.

Can I ask you to think about something?

How would you handle someone who ‘feels too much’? What would you say to such a person? If someone does not behave or feel the way MOST of the people in that situation would behave or feel, what would you think/feel about the person? How hard is it to be a non-judgemental person? Let me know what you have to say by putting in your comments and suggestions below :)

#twinmom pregnancy

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simplelittlebrowngirljae · 5 years

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Thank You Endo, You Made Me Who I Am!

My journey to diagnosis of endometriosis is probably like any other woman but I love to tell my story, well because it is mine. But what exactly is endometriosis? Endometriosis is a disease that affects millions of women. It is when the lining of the uterus grows on the structures and organs outside of the uterus--- to include intestines, bladder, lungs and kidneys. It can cause infertility, pain with sex, heavy bleeding, severe pain during periods and in between, fatigue. Women with this disease also can develop endometriomas or chocolate cysts which are hard to detect. Endometriosis often takes years to diagnosis because it cannot be seen on a test—it most often is diagnosed by surgery. The best way to describe how this disease affects women is like having thick black tar causing your organs to stick together. Endometriosis can also affect your heart with arrhythmia, cause dizziness, malnutrition, among other whole body symptoms, which makes it hard to diagnose.

Growing up, I never really noticed my period was an issue until I got to high school. My flow go to be soo heavy I became severely iron deficient and my cramps were killer. I complained to my mom, and she dismissed me but I persisted. Finally she made an appointment with Primary care doctor at the age of 15. My doc asked questions and said “ oh some women are just heavy, if you lost weight it will get better” I took that and walked away and binge dieted and my weight didn’t moved and my symptoms did not improve over a year. I would bleed so terribly during my cycle I would soak through EVERYTHING! Finally I went back to my mom and begged her to take me back to the doctor. She was then convinced I should have an ultrasound. That turned up nothing but at 16 my doc put me on birth control. I immediately felt better and my cramps lessened and flow lightened. I felt I had my life back.

Well let’s fast forward 10 years. I got married and went off my BC and horror came back. I wanted a baby so bad, so in my head I was going to push through so that I can have what I always wanted! But, I had days I would have to leave work because I had just bled all over. On top of that, if I was home, I would vomit all the time, wouldn’t be able to move or do anything. I ignored it because I wanted this kid, I didn’t want anything to get in my way. But then things really changed. I was sick ALL THE TIME. And felt miserable. I went to my dr because I didn’t think I was pregnant because I was literally in between cycles. As soon as I went to her, my cycle began and it was the worst I ever had in my life. She explained to me that I had gotten pregnant by my embryo wasn’t viable because of my eggs and that my uterus could not house a baby and I would have severe complications—I had been told at 25 I would have no babies. At that time I couldn’t quite process that, and she didn’t care to go into great detail. I refused to believe the tom foolery. I never told a soul, not even my husband. At the time, she couldn’t fully explain the whole situation but she knew things weren’t right.

Shortly after that, we split. And I decided to go back on BC to end my horror each month. I tried to do an IUD and my body rejected it—twice. I went back on pills, and had to try multiple methods because I was diagnosed with High Blood Pressure too. In all of this, I was also trying to lose weight and wanted to be wise in my choices. Found a great method and felt okay for a while…. Until March 28, 2014.

I had deep pain in my pelvis. It got so bad I could not sit, stand or lay without 8 pillows under my butt. I went to urgent care and found I had a cyst rupturing. I was told to follow up with my gyno the next day. I did and it was confirmed and it was a doozy. Rest was ordered and soon I felt better. I thought that was it. But I was wrong. Over the next few months, it got worse and I made more ER trips than I could count in a 6 month period and nobody could tell me what was going on. I was told the pain was in my head, that I was drug seeking, that I was lying, that I was depressed and that simply, everything was fine. But it wasn’t.

So I began to seek out specialists. I saw GI drs, Interventional Radiologists, Orthopedists, Surgeons, Gynecologists who were surgeons, Urologists until one day I stumbled across a woman who told me her story and how she suffered much like I had been. She gave me the name of a doctor who specialized in finding hidden endometriosis. See what I hadn’t said is that I had had a laparoscopy to look for endo and it wasn’t seen. But what I did not know what that there is hidden endo, and the doctor must be specially trained to find it. So I called and got an appointment instantly. I was scheduled for surgery soon and when I went in I had a mass the size of a half dollar removed and other lesions. My endo was mild, but it was there. Time went on but then everything came back!!! Like what the hell?!?!?! I went back and cried. We had tests ran and it was suspected that I had also developed adenomyosis as well, which is like endometriosis inside of your uterine wall, like deep in the uterine wall, so just as painful! We tried different meds and things and time droned on. Until I got a huge mass on my left ovary. I went back and next thing I know I am having surgery, lost an ovary and a tube and had a lot of endo removed, as it had spread to my bowels and my sciatic nerve. No wonder I couldn’t walk well, no wonder I could not sit, no wonder I could go to the bathroom the without assistance of laxatives at times or why I would feel sick. My pelvis was almost glued together but thank God I didn’t have to be cut open. The down side is that my tummy looks like a connect the dots picture. It was also confirmed what my other doctor said years ago—I would not be able to have children but now we knew why. The endometriosis and adenomyosis had wreaked havoc on my body and made me not suitable to bare my own babies--- soo much to continue to process. However, I thought that after this surgery I could start my life over … but it took me so long to heal….nearly 8 months!!!! But the pain was bad and the multiple cysts and masses and growths being gone was worth the recovery time. I am on a treatment plan to slow my growths and manage my pelvic pain, but that is not a cure, that is management. There is no cure for this

Endometriosis is unpredictable. I could be out on a walk and feel great one minute and then five minutes later my legs give out. I could feel okay in the morning and by evening have severe pelvic pain. I have days where I look amazing, and days where I look 10 months pregnant. I can’t remember the last time I wore pants with a zipper and I am being totally real! This is reality with endo.

But I will always live with this. I will have flares. I will live with my pain. I will never bare or birth my own children. However, I will always be thankful. See this disease was my first battle with a difficult chronic illness. It changed who I was. It made me patient, it made me speak up for myself, it made me advocate for myself and others, it made angry, it made me vocal, self-aware, even more empathetic, passionate but most importantly, it made me learn my boundaries…. So many things, but most of all it made me, well me.

See that is the thing about this disease or any other chronic illness that debilitates you. It is life altering and if you don’t set your boundaries with others, daily activities and other things, you will suffer more than you have to. But at the same time it helps you to draw on this deep strength that you never ever knew you had and it feels amazing!!!

So thank you Endo, you shaped who I am!

#endowarrior #iamone #chronicallyillandstrong #chronicillnesswarrior

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chronicallyinspiredx-blog · 6 years

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how it all started...

I started my period around age 13, and from my very first period, it lasted around 9 days and it was heavy, i remember having to change every 2/3 hours during school, and i also even leaked through during PE which was extremely embarrassing. My periods used to make me nauseous, and i felt faint and lightheaded, back then i didn’t understand any of it, I just thought i was being a drama queen, because it was all new to me. And my Mam always used to say to me “Come on, every girl in the entire world has a period, you can’t have days off school every month” So i dismissed everything I felt, it was normal... apparently. By age 16, I remember one period in particular, i was in AGONY. Sweating up, so dizzy i could barely walk, and this went on for 3 or so days at the very start of my period. I was so heavy i was bleeding through a pad and tampon every hour and a half. At the time i did have a boyfriend, young i know... but I was sexually active. And my Mam scared me half to death saying it seemed like i was having an ectopic pregnancy, and started saying how id need surgery, id be super ill in hospital. Spent days sobbing in excruciating pain thinking i was pregnant and going to die, but the pain started to fade out, and the bleeding got lighter, i eventually came off my period. So then i realised, well it would have been impossible to be an ectopic pregnancy so what could it be. I never ever thought anything of it. From then on i got the Depo Injection, and my periods disappeared, it was GREAT.

Fast forward to age 18, still on the depo injection. I gained a whole lot of weight on it, around 8 stone to be precise, and the doctors said it wasn’t possible for the injection to make me gain that much weight. But i wasn’t eating any different, and i was doing the same amount of exercise, if not more... I played basketball at university level, i trained twice a day, some times 3, yet i had gone from 14 stone to 22. I decided to come off the injection due to the weight gain, it also hadn’t helped very much with my mental health. I had suffered low mood/depression since age 14/15 and it had progressively got worse this time. I had suicidal thoughts, i self harmed, i just genuinely did not see a purpose for me, there was no reason for me to be alive anymore. Age 19, i had been off the injection for around a year now, and lucky me!! Still no period. I began wondering, when would my periods come back. About 2 weeks after it had hit the year mark, i began bleeding, medium flow. I was changing around every 4 hours, it was manageable, i had cramps but nothing i couldn’t manage. I would take paracetamol and it would take the pains away. Fast forward 9 months, 2 weeks... still bleeding, over the months it got heavier and heavier. There wasn’t one single day i hadn’t bled. I definitely needed shares in Tampax by this point! Over this time i had been to A&E on 3 occasions with abnormally heavy bleeding, but all they ever did was check my blood count, i wasn’t suffering from Anemia so they told me to wait it out, see if the bleeding stopped on its own. It was called ‘Breakthrough Bleeding’ and this was due to me missing all those periods on the injection. The lining of my womb had started shedding and didn’t know how to stop itself. The bleeding got heavier again, i went to my local walk in centre, and the nurse timed 7 minutes, for me to bleed through a super tampon and a night pad... 7 minutes!! I was also passing clots the size of my hand... Something was up! I got sent straight to A&E again, expecting to be told to go home. I got admitted that night, i spent 4 nights/5 days in hospital. They put it down to a burst cyst, I found out that day i had PCOS, i was told the severity of the cysts on both ovaries would make it very hard for me to conceive children without medical assistance, i was heart broken. I was sent home with tablets called Tranexemic Acid to stop the bleeding, and Norethisterone which stopped and started your periods as and when you took them. After 5 days on those pills, the bleeding stopped. However i was so badly Anaemic, I had no energy at all to even be excited by this. I was on Norethisterone for 3 weeks, then a break for my period. In this time i had searched up something called Endometriosis. EVERY SINGLE SYMPTOM i had matched this. I thought this is great, all i have to do is bring this up next time i see my GP... If only it was that easy. I came off the Norethisterone and found the pain getting worse and worse, the bleeding heavier and heavier. All over again. I couldn’t cope with this, back to A&E. I was sent home instantly... told to come back if the pain got any worse. By 27 hours later, i was barely conscious, the pain had drained me. I went back to A&E and i was admitted again, to get the pain under control... Morphine was my life saver that night. 2 gynaecologist doctors came to see me on that morning, they said there was no reason for me to be in this much pain, maybe i just have a low pain threshold... i was gobsmacked... i brought up my worries about Endometriosis due to my Mams recent hysterectomy, she’d unknowingly had Endo the whole time without realising or having any symptoms. The doctor burst into fits of laughter, nudging the other doctor and she continued to laugh with him. “You’re far too young to have Endometriosis, thats a ridiculous suggestion, you have been using the internet too much. People who are 30+ get endometriosis” then the lady doctor chips in “Why don’t you get pregnant and have a baby, then you wont have periods and you wont have this mystery pain you’re getting” I asked them to leave and i burst into tears. Not only because i was so embarrassed for myself, but i was on a ward with 7 other people, who all heard the conversation. Humiliated with an audience... From then i had 8 more appointments with Gynae, 4 more hospital admissions. A whole lot of crying and begging for a diagnostic laparoscopy. Until one caring and empathetic consultant finally gave in and signed consent for me to have it. I was put on a waiting list for surgery hopefully within 6 months,

#endometriosis #endo #endowarrior #endowarriors #endosisters #laparoscopy #chronic pelvic pain #pcos #pcosfighter #polycystic ovarian syndrome #infertility #ovarian cysts #ruptured cyst

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healendometriosisnaturallyuk · 6 years

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Susanne - Success Story - Heal Endometriosis Naturally With Wendy K Laidlaw

Listen to Wendy talk with Susanne from Sweden about her successful journey on Heal Endometriosis Naturally, 12 Week Online Foundation Membership Program with Wendy K Laidlaw.

Discover more about how this may help you and download your FREE Top 5 Jump Start Tips at Https://HealEndometriosisNaturally.com

Read full transcript below:

Wendy: Good afternoon. My name is Wendy K Laidlaw from Heal Endometriosis Naturally.com. I'd like to thank Susanne for being with me today. She's agreed to be interviewed about her experience with Heal Endometriosis Naturally book (Heal Endometriosis Naturally Without Painkillers, Drugs or Surgery, and the online 12 Week Foundation Program.

Welcome, Susanne. Susanne: Thank you very much. Wendy: Great to have you here. You look lovely and healthy today all the way in Sweden there. And so yes, thank you so much for agreeing to be interviewed. It's always such a joy to have a chat with women who have obviously experienced the book and experiences of the program. And I just wonder -- this is where I can ask you some questions about your experience. So maybe you could just tell people a little bit about your background, just how you first heard about me, about the book and then a bit more about the 12-week foundation program. Susanne: Okay. It's so much so -- it's difficult to know where to start, but my background is that 14 years ago I had the first flare of endometriosis and actually I was lucky enough to get diagnosed quite soon. I only had it for a couple of months before I got my diagnosis and that was through [stutters] Wendy: Laparoscopy? Susanne: That's right. Susanne: Then they took away three cysts. That's what they could see and after that they wanted to put me on a medicine to get me into the menopause. And I did some reading about it and I was working with health, actually, some alternative therapies, and the side effects of the drug they wanted to give me -- I can't remember its name -- but it was horrible, I thought, and back then there was not so much information on the internet but there were a few, what do you call it -- not blogs but...losing the name. It was a group of people having endometriosis. They were connected and you could only see the bad things, how horrific everything was. When they got this medication they got better from the endometriosis but they got a horrific side effects so they couldn't go to work anyway. And I thought that's not my way. I'm not gonna do it that way and so I went to a couple of different alternative therapists and they led me into thinking about if it had something to do with my stomach. And I usually had a bloated stomach.

I was sensitive for different kind of foods. I knew that, and when I asked the doctors to see if there was a connection between my intestines, the flora in my intestines with bacterias and the endometriosis. They said, "That costs too much money. We can't do that. You need to get me scientific studies that there is a connection before we can do that kind of research on you." And then I thought, well, I need to do this my own way, and through hair analysis I got to know that I had too much manganese in my body. It was actually 80 times as much as you're supposed to have and we found that I was from our water. There's a filter but it needed to be adjusted to get the manganese, so a nutritionist helped me with detoxing my body. I was practicing yoga to be able to stand the pain. And that actually helped me get well, so now after having got more and more knowledge about estrogen dominance and everything around, I think that it was not just the water that was the problem but the way I treated my body helped me out of the condition. So I've had 13 very good years after that. I've had two kids. I did have three miscarriages in between the kids, but two healthy kids and I thought that endometriosis, although the doctor says that it's a chronic disease, I thought that that's not in my life anymore. I was so worried that my daughter might get it so I started to do some reading last autumn so that I could have more lot knowledge about it. And the scary part is that my endometriosis actually flared up again after not having felt those specific feelings of pain that endometriosis gives me. And so I thought well, I've been well once. I just need to do the same things again and I will get better again. But it didn't come back quickly and I was a bit stressed I thought what what is wrong and I didn't know what triggered the endometriosis this time. And so I was searching the internet and I found your page and your really nice offer to get the book for free so I sent for it. I started reading it and this time I was worrying that I might not get rid of the endometriosis if I don't go in and do a surgery to take away the cysts. But when I read about serrapeptase and your experience with that, I thought great, that gives me hope again. And last time I went on a very strict diet. I didn't have any flour, not wheat, not any grains at all and this time when I read more about your experiences with wheat and gluten it was actually easier than last time. So I went back to a quite strict diet. And what else did I do? Well yes, I started to do some journaling just from reading your book. Not at all the three pages as you encouraged us to do now, but I started to write pain scores and what my activities were and what the outcome was and then I thought now it would be really nice to get a support, to get help to work it through, so that's why I entered the 12-week foundation program. Wendy: Yes, that was fantastic that you reached out. So when you applied for the Foundation Program I think you said that you were just trying to pick up from where you'd left off the last time. You had tried to manage it through diet and serrapeptase. So what in particular, when you're saying you wanted support, what did you feel that you needed support in? Because obviously you've been very successful before. You felt something had changed this time and you weren't able to identify the trigger, what had caused it to flare up, but what in particular made you sort of reach out for support through the foundation program? Susanne: Well, I knew that there was something that I missed, so I needed to have a detective to help me go through everything. I had -- when my new flare up-- it was in September 2017. And it was at worst in December, January, February. I was bedridden for eight days after my period and with pain scores from two to six so it wasn't as bad as 14 years ago. I was bedridden for two years - no, two weeks every month and the pain scores up to ten sometimes and that was such a depressing time. I had a really difficult time before I made it all turn. And I knew I don't want to go there this time. And when I started the program I was down at pain score from zero to two so I was quite good but I wasn't satisfied. I knew that life can be better. I do want to be able to plan what to do because that is so sad, not being able to plan anything, not being able to promise the kids to go there, to take them there, to be with them because you might need to stay on the sofa all day.

So I thought, well, I need I need the support, a detective to know what is causing it this time. And I am really happy that I did join because during this time, during the 12 weeks, I was still making progress. In the beginning of the program it was more repetition what I had done before, and of course you have written it all in the book but you always get new things. You see things from a different perspective and it was very good and I felt better and stronger. But I think it was four weeks into the program and that my mother got very ill and we needed to go in and out to the emergency with her and it was very stressful and not being able to help her. She wasn't in a state that she she could take in what we are we were telling her. And that situation would probably have caused me to go backwards into the more difficult stage of the endometriosis because of all the stress and because you don't -- well, I shouldn't say you don't but I knew I know myself and if somebody needs my help I go there and help them and I skip the things that are important for me. For this stage I needed to to do certain things for myself and you helped me stay there to do the basic things and to actually coach me through this difficult time with my mother, and that's something that I never would have expected. I'm sorry. I get a bit emotional now. It was so good having you, to talk to you, and to support me in the Program well, I needed to take some some more digestive enzymes in that period and that's something that I wouldn't have been thinking about myself so it was great and actually now my mother is much better and her situation has stabilised and I think that the most things about her illness and your Program and support has helped me. It was actually very good timing. It has helped me to get more in contact with my emotions and to get much deeper into the relationship with my old family. Wendy: And I know that was very important to you because it was such a shame that you just started the (Foundation) Program and then this had happened. But equally, it was great that you were open to do the support, I keep I referring to it as the ‘oxygen mask’ scenario, where if you don't put on your own oxygen mask and don't look after yourself then you can't help other people. You then become very very ill. But a lot of women with Endometriosis are fantastic caregivers, very sensitive and perceptive, and aware of other people, and whilst that is a lovely quality, sometimes -- I know I was guilty of it too -- of doing it too excesses, where I had nothing left to give but I kept giving out to other people.

And I think that certainly one aspect of the (Foundation) Program is remembering you have to look after yourself so you can help other people. And with your mother being so ill, and you're right, normally in these situations then you forget to eat and you forget to look after yourself and it's just remember to keep the basics. And full credit to you. You kept turning up on our calls and you kept turning to the group calls and you you kept going. Because I do believe that life throws you obstacles in the way.

Sometimes on this new journey when you're trying to heal yourself and it can be very, very frustrating. So what about the emotional element you talked about; developing your relationship with your emotions? And I know and I'll share this for people who are listening -- you found it quite difficult to cry before, didn't you? You were saying that to show your emotions in that way felt, felt challenging for you and now you feel a bit more comfortable with yourself, to show your emotions. So thank you for being so vulnerable on this interview with us. But maybe you want to share a bit more about your relationship with your emotions now? Susanne: It's not easy to say words on it, but the journaling has helped me a lot to sort out my feelings and to structure my feelings and to to prioritize what to do next because in that situation where we were it's such a chaos. And nothing really works as usually. All the routines disappear> And the journaling and doing it in the morning, it was so good. And I know that you say in the beginning of the program that most people think that that's the most difficult thing to do. I thought it was difficult as well even though I started before, but then it was just some tiny notes. And after a while I did it in the evening you told me the importance of doing it in the morning.

I started doing it in the morning after my yoga session, which is something that I wouldn't let go now. It helps me so much. But now I actually do it before my yoga. I do it right after waking up and I have -- I'm surprised that I do remember so many dreams. I think that it's almost impossible that I have dreamt as much as I do now earlier. But probably and I know now that if I do something else before my journaling, if I go around do things for 10 minutes, the dreams disappear. I don't remember them anymore. But right after you wake up they're still in your head and it's very interesting to -- most of them are strange. They don't make sense at all, but now I've been going back look through my journaling and I see that it's almost scary because I saw things in my dreams have actually developed to be true. To be honest, it doesn't make sense when you write this but after a while and you see that, wow, I could see that coming. And many science I I've been thinking about "Am I doing this right?" the journaling, but you said that there is no right and wrong. Just try not to be judgmental and I've had that in my mind. And, well, many of my emotions, they have as soon as I get the courage to write them down, they are not scary anymore. As soon as I write them I can work through them, see if there is something I need to do, somebody I need to contact, next step with somebody in a relationship, or if it's somebody something I just can let go. And quite often it is it is something that I don't need to carry around. I can just let it go and it gives me a sense of being much stronger, wiser, calmer, and by that it's been easier to talk to friends and relatives about emotions. When we talk it's not just about daily things. We tend to talk about more emotional things and and sometimes I cry. Sometimes my friend cries. Sometimes we both cry, but it's just nice. It's not any hysterical crying, just transforming feelings that are released and it feels so good. Wendy: Weah that's fantastic. And I should share that obviously, as you mentioned, the journaling is one part of the three daily basics or the foundation program and there are other layers of changes that we we make throughout the program, but the journaling was a challenge for you at the beginning and it is a challenge for everybody because normally when you've got endometriosis and your chronic pain and you're literally just getting through your life, just taking the time to journaling feels counterintuitive. But what the purpose is, and I'm glad to hear it's the same for you, is that you're getting in touch with your emotions. They're not big and they're not scary and you're learning to make the connection between what is happening in your emotions and how that manifests or how that resides in your body. And how would you say the program, the 12 week foundation program has helped you with regards to the relationship with your body? Susanne: I don't know. That was a difficult question. Wendy: Do you think through the journaling and through the education and the webinars that you maybe feel a bit more confident about your body? If there are any signs and symptoms in any aspect, you know have a better relationship with your body? Would you feel as well as your emotions? Susanne: Well, as I -- bodies are very much in my interest. I trust bodies to heal themselves. I've always had that in mind but it's always more difficult when it happens to yourself and you don't see the whole picture. It's easier to just stay in one corner and it's very easy to become a victim. And it's also difficult when it's a close friend or relative that is sick or ill or hurt in any way. It's so much easier to see what other people could do to get better. But, well, as I said, I've always had that with me since I was a kid, that the body is amazing at healing itself and now it was so good to have you as a as a coach to help me with this wider perspective to have a look at my body. Wendy: I think it was the multimodal approach to the program that was very important to me because I was unaware of how your emotions would affect your hormones and how symptoms and signs in your body could be different -- types of signs and symptoms that we're giving out different messages. Different emotions we're giving different messages in relation to the body, and I think that's what I hear from you and I hear a lot of the women in the program, is they develop this confidence, not only within their own instincts, their own emotions. They're more comfortable with their emotions, recognizing their emotions are messengers, they're telling them things, and then also been able to tune in to their body in a slightly different way than they've done before because the body before was invariably screaming out to them in pain when something was wrong but any pain and any symptoms are signs and messengers that there's something there that needs attention, and that's as you said earlier in the beginning, that's where you and I work together as detectives to try and fine-tune different things. But I think what's been lovely in your particular experience of the foundation program is, as you said, you really understood the body is an amazing thing, which is probably going to be hard for some women to hear if they're writhing around in pain and bad with endometriosis. They may not feel that loving towards their body right now, but when they learn what's causing the pain, because there's always a cause -- it's cause and effect -- if they identify what the causes are and remove that, then as you said the body is an amazing thing and will heal itself. But what I've heard from you is that you really appreciate the emotional component, which is not something that tends to get talked about, and dealing with that and then becoming more comfortable with your emotions and things So if anyone was listening and considering joining the foundation program, what what would you be saying to them? What are the key aspects, apart from the journaling and the power shakes thing? What, for you, has been most significant or important aspect that you would take away from the foundation program? Susanne: Well, I was thinking about joining for a long time. As new and had this belief about the body, and I knew that I had been healing myself before I thought I can do this on my own again. But after a while I thought, no, I don't have time to do this and when you're in pain you're tired and I thought I got some kind of dizziness, so it was difficult to do a lot of reading and studying on my own. And in the beginning it felt a little bit like I was giving up by joining, but as soon as I had joined the program I thought, "Oh shit, why didn't I do this earlier?" because it's such a relief to have somebody to talk to you with the experience of healing endometriosis yourself. And, well, you were talking about the emotions. I had done everything I thought possible with the products and physical stuff, but I didn't have a clue about the emotions. I did I did a lot of relaxation training and mental training because I know that mental training has helped me very much before, both in sports situations and in in daily life. But this is another way of looking at the emotions and, well, one of the first things, actually -- I think it happened the first week -- was that you advised me to include my family. And I thought that I don't want to drag them down into this boring and -- well, I can't really find the words for it, but this black hole that endometriosis is for me. I did everything to provide for them, to have a good time. I just put myself in a sofa and said, "Did you go out and do this?" and my husband and my kids they went out to see friends and do fun things while I was in the sofa. And I didn't really inform the kids about what was going on and the first week I realized that I'm so stupid. Of course, of course they want to know what's wrong with me and as I'm as soon as I did that that was the first relief, actually. And I get emotional again. But I've got a six year old and a 11 year old and this six year old, he was listening but he thought, "Oh, can we do something else now?" when I was trying to tell them about the disease what I was doing and that I was getting help through this foundation program. But anyway, after that little family session it was so much easier and that was the first stage of my emotional trip, actually, to let them in and to -- well, the idea I'm not carrying the burden all by yourself. It's not a sign of being strong, trying to fix everything yourself. I have learned that it's more courageous and you're stronger if you can ask for help and if you're willing to take help. Wendy: Yeah, and I think he done so brilliantly in that regard because I know that that was very difficult for you at the beginning. And again, that's very common with women with endometriosis. I knew I was the same. It felt like a sign of weakness to ask for help. I felt like a burden. I felt like a drain. I didn't feel very good about myself either when I was in a chronic stages of pain and lying on in bed. But I think when you have the support to be able to say and explain it does take more courage to share with your family -- this is the situation, this is what I need from you, and would you help support me through this program -- because I want to get myself -- well, I want to live my life again and sometimes, you know, it's even just getting support and the language and how to approach it, ow to do with them because sometimes you're just getting through the day dealing with the pain without trying to think about how you might communicate that. But I agree, it is definitely takes more courage to share you know what's going on. And that's why in the first week of the program I encourage you all to sit down with your families and let them watch the video of the laparoscopy. Suddenly they've got a whole new perspective on the laparoscopy operation and what's going on in your inside. And that's, again, just part of building your confidence, building up your voice and helping you share your emotions. So if anyone was considering joining the program, what would you say to them? What would be your your parting words to people if they're maybe struggling on their own at the moment? They're maybe following my book and maybe taking them longer than they'd like. What would you say about the foundation program? Susanne: Well, I would say don't hesitate. I really recommend. It's the best support to really get going because there are always things in your life that turns up. And then it's so easy to get your actions for endometriosis on hold and that's dangerous to do that. But the program is the best way to really keep fighting and the twelve weeks, they passed quite fast, and it's difficult to really see the difference all the time. And although I just did the basic things in the program for five weeks and then I had a lot to catch up, it was so interesting now in the end to look back in the journaling, see what I've done, how I felt and to reflect on how I have changed. And it's not only the pain score in the endometriosis that has decreased. There are so many more things that has happened and the things that I wrote at the beginning of the program, what I would do when I felt pain free, I've already started to do. I achieved them. Yeah, and by then I felt like a dream, a dream that might be impossible even though I did have this feeling about natural healing, that it would work. But it was still a dream that I didn't know if it would come true ever and now they have come true, many parts of it. And it's it feels like I'm the boss of my life now. And I think that one reason that my endometriosis flared up again was that I had lost contact with myself, both by caring more for the kids than for myself, and I had a job that was quite demanding, a lot of traveling, and I had a bad conscious of leaving the kids so much. So when I was home I just spent time with them and there was never time for me, for myself, and in this program you really need to look after yourself. What do I need? And get in touch with yourself. Now it feels so -- I can't find the word for it, but it's so natural. It's not strange at all. It's just as it's supposed to be and instead of just running around in circles doing what other people want me to do, now I'm the boss in my life. And I didn't think that would be an outcome or this program. I was just looking forward to a pain-free life. Now it feels like it that is a small thing. That is the greatest thing when you are in pain but now I even get more so that's something to look forward to if you're planning to join the program. Wendy: Fantastic. And I think that's it. I remember feeling had this great desire to get well when I was bedridden but didn't know how to do it so that's what I put everything that I learned into my book., by putting into the program. And people just have to plug in to the various steps that I've taken and learn from what I learned and not have to just struggle to find out these things themselves. And as you said, there's normally a number of different elements that we need to look at any one given time and it's hard to do that when you're on your own. And then obviously we do have the group Q&As every two weeks, as well. How do you find that coming together with other women that are going through the program? Susanne: That it's very good. You get a perspective and they take up things that I haven't thought about that turns out to be important for me as well. And it's very important not to feel alone and even though I've just listened to them during these group calls it feels like we're a team. We're fighting together and it's so great to hear that they're getting better as well. Wendy: I feel that that's really important. Women with endometriosis -- and I knew I felt exactly the same. I felt so alone, terribly alone, and I made a vow, I made it my mission that once I got well that I would write what worked for me and make sure that there was enough support in place for women so that they felt part of a group and a community that was not just talking about the pain or the symptoms or surgery but actually talking about getting well and healthy and and getting their life and their body back. Because they can be so designing when you got a flare-up or when you know you're bedridden again and you don't know why. But as you say, when you're going to the program yourself -- that's why it's 12 weeks because it does take time to start to see the changes with planting seeds along the way whilst removing and swapping out any offending products or people or foods or anything, depending on what's what's the issue for you -- but having a support and hearing other people, again, it just makes you feel you're part of something and not alone enough. That's a big thing> But thank you so much for taking the time out to chat me today. I would say if anyone is interested in getting more information on the foundation program, it is over a 12-week. It's an online membership program with 12 one-on-one appointments with me, group calls, handouts, downloads, Facebook group.

You get all the support that you need.

Please go to HealEndometriosisNaturallyCourse.com or go on to HealEndometriosisNaturally.com and you can click on details there on how to join up.

Equally, if anybody would like to get a free paperback copy of my book which lays out my story and a step-by-step guide of what worked for me then go on to Https://HealEndometriosisNaturallyBook.com and you can order your FREE copy there (I just ask you to pay the shipping and handling). Wendy: Susanne, thank you so much for taking the time out. I know there will be so many women to get so much encouragement and hope and from hearing your story. And full credit to you. You've had a lot of challenges thrown your way throughout the program, but you stuck with it, you kept going, you didn't give up and I'm so pleased that you've seen the benefits on the program that you have. Susanne: Thanks, and I want to encourage those with the Endometriosis that I'd never give up because it is true the body is going to heal itself if you give it the opportunity and it's so great to get the life back again. So go for it! Wendy: Well, thank you so very much, Susanne for sharing. Take care. We'll speak soon.

Want to learn more;

Download your FREE Top 5 ‘Jump Start’ Tips at Https://HealEndometriosisNaturallycom

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#Endometriosis

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these-eyebrows-are-not-even · 4 years

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Pain, Pain, go away, please come back another day

I have decided to start off the first Thursday of the month with a personal piece, the aim is for it to be like a confessional; I start the month fresh and we dive into all kinds of things during the rest of the month.

I don’t think of myself as any different than most 23 year olds apart from the fact that I have a tendency to write stuff down. For me the thing that sets my life apart is the pain I experience. Sometimes it’s for consecutive hours which lead to consecutive days or sometimes it could be as little as thirty minutes. My first memory of this pain is when I was 15 and sitting in my GCSE French Class. I remember sitting there in so much distress, I couldn’t focus, I was worried I was going to faint. My teacher sent me to the nurse’s office and I hardly remember walking there because of the pain. I was given a painkiller and a hot water bottle and laid there till my mum came and collected me. A friend had dropped off my stuff as I left class for the day and I went home. We were meant to go out for a birthday dinner that night, but my mum said “you’re too tired now, even though you’re no longer in pain, you’ll just be too tired to enjoy it” and she was right.

And then she told me about her pain and the painkillers she used to help with it. The system was you take co-codamol (codeine-paracetamol) and you take that every 3hr 30 so that you’re overlapping between doses — that way, you are ahead of the pain. But that isn’t enough. So you take ibuprofen too, as it’s a different formula to paracetamol so they can be taken together. So you take co-codamol and ibuprofen whilst having a constant hot water bottle. That’s what I did, sometimes it worked and other times the pain still came through. I got used to taking painkillers and pretending I didn’t want to cry because of it. I got used to having painkillers on me or running into drug stores to buy them. For any medical or pharmacy student out there reading this, I get that you’re worried about my kidneys, liver and stomach but I don’t know what to tell you.

When I moved to Maastricht, I had begun taking the pill constantly. Although I still felt pain on the pill, at least it wasn’t as bad when I had my period. There are two incidents I remember. The first was I was coming back from the supermarket with my weekly groceries and all of a sudden I was in so much pain that I just sat down on the pavement, I couldn’t walk. I debated how many minutes it would take for a friend to come get me and if I could walk the last ten minutes home. I finally got up and walked home crying in pain.

The second happened early on in my current relationship. I took my boyfriend to a house party and we were standing in the hallway by the stairs chatting with people and planning to move on to somewhere else soon, when all of a sudden the pain hit and I sat down on the stairs and prayed it would end. It didn’t, I told people I felt tired and would actually just go home. It was an easy walk back to my house but I could barely stand so me and my boyfriend walked to the bus stop. We got on the bus and he was trying every tactic to distract me from the pain that is consuming me. We get back to mine and walk up the 4 flights to my room. I lay down on my bed defeated and he had to undress me as I couldn’t even sit up to undo my jeans.

I suffer from debilitating cramps, I have crawled around my house not able to stand, I have been unable to shower with the pain and unable to sleep. I take far too many painkillers than recommended by medical professionals and I used to drink whilst taking them. But I don’t know what else to do.

My mum had endometriosis and after years of callous remarks and patronisation she was finally taken seriously. I didn’t want my story to be like my mum’s and so last year I summoned enough courage to go and see a doctor about it. I got referred to a gynaecologist and after an ultrasound and listing my symptoms I was told “I think you have endometriosis”. I got referred for a laparoscopy and got one in January this year. It is a minor key hole surgery where they examine the organs inside the abdomen and is the only way they can diagnose endometriosis and conditions like it. An incision around 1–1.15cm is made in your belly button and a tube is inserted through the incision. Carbon dioxide gas is pumped through the tube to inflate the abdomen. Inflating it allows the surgeon to see all your organs more clearly and gives them more room to work. A laparoscope is then inserted through the tube. The laparoscope relays images to a television monitor in the operating theatre, so the surgeon can clearly see the whole area. Further incisions can be made to check fertility or to remove any growths or scar tissue in the area. After the surgery, some of the gas remains in your body and drifts around so you may feel back pain and are very gassy as well as bloated. Apart from that, you may feel cramps and vaginal bleeding. It takes around 5 days to recover and bending, carrying heavy things etc is not advised as you don’t want to open the stitches. You also have to wear compression socks, in order to prevent blood clotting and I put them on straight after surgery and wore them in the days after. Bonus fact, sneezing is incredibly painful and holding a pillow around your stomach is very helpful in cushioning the pain (pun not intended). Two weeks after surgery you can have sex again however, that does not necessarily mean you want to. After the surgery I felt slight body dysmorphia because of the scarring and swelling that had occurred, which was mentioned in the helpful NHS pamphlet I was given! More information: https://www.nhs.uk/conditions/laparoscopy/

My mother had the same operation many times and it was almost the exact same when she had it more than 20 years ago. She was the one who told me about the sneezing trick with a pillow! As a society, we have progressed medically in some areas so much, it is unrecognisable. However, for women’s health and women’s reproductive health, it is even hard to say that progress has been made at all.

After the surgery, I was told they had found nothing: I was fertile and there was no reason for the pain. They would book an appointment with me to discuss pain management options.

When the first period after my laparoscopy was pain free, I thought somehow I had been cured. But every one after that has been just like before and I still have random pain.

When talking with a friend about this she said “Planes fly through the air, thousands of them daily, carrying people across oceans and deserts and mountains, defying laws of gravity and weather. When a plane crashes, a full review is conducted and answers demanded despite the fact it defies so many things to even just take off. Despite it all Society cares about plane crashes. However, it takes 7–8 years for a woman to be diagnosed with endometriosis, for her pain to be taken seriously. Thousands of women suffer pain daily and the cause is easily researchable with all our technology but unlike the planes, society does not care about women’s pain”

And she was right. Society does not care about my pain or the pain of any other woman for that matter. That saddens me and it makes me angry. I would like to be in less pain and I don’t think that’s a big ask. I would still be happy with period pain but just at a more normal level of pain as I know my pain scale is messed up.

I would like not to have to decide between writhing in pain as I try and give my internal organs a break or taking the drugs and still ending up writhing in pain

I know they say I am fine but I know this pain isn’t normal and I know this isn’t the life I or other women deserve.

I also know that I’ll probably have more laparoscopies and that this was just my first.

I also know that if I do have endometriosis or a similar condition such as Polycystic Ovary Syndrome (PCOS), that by the time they find it and treat it, I could be infertile, and that if society cared about my pain, something would have been done sooner. Society cares about my fertility but it does not care about the factors which alter it. If a woman became infertile due to reproductive conditions such as PCOS not being diagnosed early enough, the blame would fall on her for not seeking help sooner and not on the medical professionals who withheld help .

This may seem like an angry or bitter article but right now, I mainly feel sad. I feel sad because I know I’ll have to keep pushing for statistically 8 years and keep taking painkillers and saying things like “oh I think I’ll just take a seat” when a painful cramp hits and I feel weak.

I also want to say to every single woman out there, I am here to support you and here to continue fighting with you for medical professionals to take our pain more seriously and get the money allocated to needed research. We shouldn’t have to live with this pain.

#women #life #pain #endometriosis #pcos #young wome

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macabre-megan · 6 years

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It’s been awhile...

It’s been awhile since I’ve really used my tumblr account. I pop on every now and then to scroll through stuff, but I really haven’t been active in....a couple years? I feel the need to ramble a bit and right now this seems to be the best place to do it. So here is my venting. I have rambled about it a million times to people, but being able to get everything out in one go just seems therapeutic to me right now. So here we go... the past two years have been strange to say the least. Both involved lots of weird shit, but this past year was hell. It is the year I learned what it’s like to be passed around and ignored by doctors and other healthcare personnel. Back in May I began developing a weird pain in my right upper abdomen. It started one day out of the blue and progressed over a week and got stronger and more intense. I also began to feel chronically nauseous. That’s when my whole life was put on pause. First my gallbladder and appendix were checked out. Everything came back normal. Then my stomach. I was given extra strength ant acids and told to watch my diet and that I’d probably feel better in a few weeks. I began to feel worse. I fought with my own primary doctor to refer me to a gastroenterologist, she finally agreed and I had an endoscopy done. Everything from that was normal. I was growing increasingly concerned because no matter what I was still in near constant pain and could barely eat due to nausea. By the end of summer, I had been to the ER 3 times, had 4 CT scans, and endoscopy, every other GI imaging test that was available, only one ultrasound, and all with normal results. I grew frustrated because scans revealed a kidney stone and a small ovarian cyst, neither of which i was informed about. I was angry because I began to hear eyes rolling when I called my doctors office with concerns and bringing up that I was still in a lot of pain and could barely eat. I basically was at a point of giving up trying to figure anything out after my 3rd ER visit in august....when I was told nothing was wrong and that I should follow up with my “psychiatrist.” While this was going on, my manager at work luckily believed me and was on my side. Which was good because a couple co workers decided I wasn't really sick and was clearly faking it. Or that I was just going out and getting drunk every weekend, then complaining about being sick at work. I began to trust them less and less. I stopped talking about my personal life at work and began just hiding my pain from them all. Even the ones who weren’t causing problems. I just couldn’t deal with the drama that came out of nowhere and that had no reason to it ( it literally felt like I was in high school or some shit. I knew the specific people were constantly whispering behind my back and I could feel the vibes in the air. especially on days where I was really hurting and couldn’t do much more than sit at the computer and do clerical work) But my manager suggested things I hadn’t thought of because of the location of my pain. She mentioned ovarian cysts and endometriosis. I was skeptical at first, but when I kept running into dead ends, I looked into things more. That’s when I started keeping better track of when my pain was worse and what accompanied it during those periods of time. She mentioned my symptoms to a couple of the pathologists we work with (I work in the histology department in a hospital laboratory, as a lab technician/histotechnician and diener) and they both said it was very possible that endometriosis was the culprit. My doctor didn’t agree and chose to not look further into my pain, saying it was probably somehow a muscular thing and basically just completely wrote me off. Jump forward to the end of September.....I was having a horrid couple days of pain. I came into work and could barely stand up straight due to my lower back and abdomen hurting so much. I couldn’t lift anything, the fact that I even got to work that day was a miracle. My manager was not working, so I didnt really have a safety net either. I was told there was an autopsy that no one else could cover so I would have to assist. I began crying. Just flat out bawling. I couldn’t hold it back. I was told to just do what I could and let Dr. T. (the pathologist who does all the autopsies and has worked there for a super long time and was the head of the pathology department and lab director up until he partially retired recently) know what was happening. I still couldn’t hold back tears and began crying in his office trying to explain that I was in too much pain. He told me everything was okay, he told me to not worry about the case. He felt so terrible and I felt awful for making a scene because it was the last thing I wanted to do especially with the on going scrutiny from my co workers. He said something along the lines of “I’m going to make a phone call for you. I will talk to you after I’m done with the case. You will hear back from me and I’ll let you know what to do. Just hang tight.” He got me in that same day to see the top gynecological surgeons in the area. The doctor who specializes in fertility problems and reproductive disorders. I still to this day can’t thank Dr. T enough for that phone call. Every time he asks about progress or anything involving stuff with that doctor, I tell him how much I appreciate what he did. That day I went home with an unofficial diagnosis of endometriosis and was told surgery would be the best option due to how extreme my symptoms where. I agreed. I didn’t question it. I wanted a definite answer and I wanted this shit gone from inside me. I was desperate. Now fast forward to last Thursday (January 11th). I went in at 9 am for a diagnostic laparoscopy. I had so many fears....that they wouldn’t find anything....that things would be worse and they would have to take more out....that I’d lose my uterus or some other extreme situation. When I woke up from surgery.....when I was taken to the recovery room and wheeled in to see the faces of my husband and mom, I heard the most relieving thing in the world. They found endometriosis. They found it scattered right around where all my pain was. It was removed. I had an official diagnosis and a name to put to what has made my life a living hell for nearly a year. My appendix was also removed, along with an abnormal lymph node. It seems weird to be so happy about it, endometriosis is a chronic disease and it can very likely come back any time. Surgery is not a cure......there is no cure. I now am labeled with this for life and everything from here on out is anything to try and suppress the tissue from growing back and managing any symptoms that pop back up. And it is possible that I may have to have surgery again at some point in life. It’s hard to predict. But I have an answer. I have a reason for why I was in so much pain. Why I felt so awful all the time. I have an answer. I no longer feel like I’m crazy and I can look doctors right in the eye and prove to them it’s not all in my head. I have a endometriosis. I have a chronic illness. It took just about a year to be listened to and diagnosed. I missed out on so much. Slept so much. A lot of strain was put on my marriage and on friendships because I just couldn’t do the things I used to do. I came close to giving up so many times. The frustration, anger, tears, arguments, loneliness, pain, depression, doubt......here I am on the other end. Still recovering from surgery, but I’m optimistic and filled with just so much relief, I can’t stress that enough. This experience has been a roller coaster.....and it felt like I was never going to be able to get off of it. I have Endometriosis. I have a chronic illness....

#endometriosis #chronic illness #long post #my story #endowarrior #chronic pain #diagnostic surgery #worst year of my life #i'm not crazy #light at the end of the tunnel #i have endometriosis

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awkwardshanandagins · 6 years

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Where We Go From Here

The last few days have been particularly hard. At this point, you all are no stranger to my ugly crying, but these past couple days have been intense! Let me give you a little back story as to why.

Paul and I have tried to get pregnant now for six years. You obviously know about our infertility issues as this blog is called "The Infertile Hurdle." Duh. Anyways, we decided to go the route of In-Vitro Fertilization (IVF). Our doctor gave us the option of insemination (IUI) or IVF. We chose IVF because our chances with IUI are very low and what a waste of time, energy and money. I don't think I can deal with that many more negative pregnancy tests anyways. Speaking of pregnancy tests, I should have bought stock in that shit years ago! With all the women struggling with infertility and obsessively taking tests, I could be a millionaire by now. Okay, maybe not a millionaire but still.

So IVF it is. We had it planned for July 2017 which obviously didn't work because I relapsed and with losing my vision and getting all the tests necessary to diagnose MS, we just couldn't even think about IVF. After working with my pelvic pain specialist, my normal obgyn and my neurologist, we have come up with a new plan. There are still a lot of unknowns and we don't see our Reproductive Endocrinologist (RE) until January 23rd. Here is what we do know...

The pain I'm living in from the endo and PCOS along with the nerve pain in my legs from MS have become too much. I am going out of my mind almost daily and there is nothing that helps. I'm still bleeding through the lupron and I'm certain the endo is growing. My pelvic pain doc suggested excision surgery for the endo. I have had two laparoscopies already with regular obgyns but she said they could have During this excision surgery, she will go in and remove it all along with the new nerves it has created (which causes all the pain) instead of just burning it off. This doc specializes in endo and will likely find it all which my other two doctors were unable to do. If it can take one thing off my plate, I will be so incredibly grateful.

The nerve pain kind of is what it is. It is caused from the damage on my spine from the lesion. There is no turning back. I have asked about nerve ablation and a neurostimulator, both of which they said will not work. To give you an idea of what nerve pain feels like, imagine barbed wire, on fire, ripping through your legs. Sadly, I'm not exaggerating. And thanks to Colorado and it's crazy temperature changes, my pain is off the charts most days. My neurologist has tried every medication possible at this point, none of which have worked. We're currently just increasing what I'm on until I hit the max dose hoping it'll take the edge off. So, that sucks balls but what are you going to do. At least if I can get rid of my pelvic pain, maybe I can manage my legs.

Excision surgery is scheduled for February 12th, wish me luck! After that, within four to eight weeks, my RE should start prepping me for a cycle. I'm told that my RE would put me on lupron until he's ready to do his thing so my pelvic doc suggested I stay on it throughout the next several months.

No big deal, right? Wrong. Turns out, lupron is an agonist for MS. (Medical Definition of Agonist: A substance that acts like another substance and therefore stimulates an action) Who knew? Obviously not my fucking doctors! I spoke with my clinical pharmacologist who helps me with my DMD (disease modifying drug which slows the progression) for MS. The DMD I was using was the rituximab infusions. Since it's a form of chemo, I obviously can no longer do the infusions while trying to get pregnant. She informed me lupron puts me at high risk of a relapse and if I hadn't done the infusion, I would almost for sure be relapsing right now. We discussed me not taking any DMD while trying to get pregnant because I do not want to be on anything while I'm actually pregnant. Unfortunately it doesn't work that way. I can't really take something for just a couple months for it to work and if I take nothing, immediately after giving birth I'm at extremely high risk for a relapse. I cannot chance that because who knows what the monster will attack next. What if I couldn't walk or completely couldn't see? I want to be able to take care of the damn kid after I have it. So here are my choices: I either don't use any DMD and am at very high risk for a relapse prior to getting pregnant (who knows how long IVF will take or if it actually will the first time) or I go on copaxone which is a daily injection and is completely safe during pregnancy, so I'm told. I wish the decision was as black and white as I just made it seem.

So, again per usual, I've just been ugly crying all over the place. I don't know what to do and I'm so angry I even have to make these decisions. This is not how I saw my life going. A lot of these emotions have drudged up other questions like what if I am a terrible mother? What if I'm not meant to have a child? What if I keep relapsing and can't even take care of the child? What if IVF fails? What if IVF works and I miscarry? What if, what if, what if...

I have to stop asking myself these questions. Does everyone who plans for a child or is in the process of having a child ask themselves these questions? Does everyone doubt themselves as much as I do? Are my hormones taking over my body and slowly trying to take over the world? I think that last one is a definite yes.

We're taking the weekend to think, pray, cry, scream, research, laugh, cry some more and research even a little more. Then, when we're ready, we'll make our decisions of where we go next and we'll move forward, like we always do. Honestly though, right now life can fucking bite me.

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jfleurcannon · 4 years

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oh fuck. a hysterectomy story.

just so i don't have to go through explaining. please visit links and read up if you are interested, i simplified it AF and wiki'd the source, otherwise, this is legit not the place for you. i talk about things, life, whatnot, and my life is fucking bullshit sometimes.

endometriosis

adenomysosis

fibromyalgia - i'm not even gonna get into this one. because, as the doctor who diagnosed me said, 'not many people believe in this one, so maybe don't say that you have it out loud.' but chalk that guy up for chronic musculoskeletal & joint pain in my wrists, arms, shoulders, back, butt, and knees. but 🤫.

i'm sure y'all know wtf depression and anxiety are, i see those #bellletstalk tags. it's been with me for years, since i guess the chronic pain started. i got my period and wondered why the fuck i was the only one who got sick, like sick. fainting, knocking over a mannequin display at the eddie bauer at fairview mall (you're welcome, sisters), passing out at school and having to be carried out by julie (thank you, sister), missing so many activities and things i wanted to do but couldn't. having 'jenn's always sick anyways' thrown in my face by a childhood friend, being made to feel bad about pain and not wanting to be in the mood, having to cancel plans last minute because of pending pain, side effects from meds i'm taking that make me sick, but not quite as sick as the original problem - so i deal. like i deal with it all. [like a warrior. i have held my pain like the damn death star. my uterus is the death star. except that time i carried and birthed a baby, and then it was fucking AWESOME!] typically it's bottom shelf paper bag internalized. and for years my solution was to therapy it out, or shove the feels down hard so i developed massive GI issues, or maybe that is the endo, who the fuck knows. fast forward years of therapy and a shit ton of medication and three suicide attempts, the final one being in 2007. i was hospitalized for the final attempt at sunnybrook's mental health ward. the F ward, i shit you not. i felt like girl intrurrupted, but there was no winona or angelina. there was a pam and a joan. no padded room, but i couldn't leave to go outside for the first week. that was fucked up.

pain is pain, and although i am a fan of ja-rule, pain has never equaled love to me. it has only left me with an overwhelming hate for parts of my life, that were always plagued by illness, pain, and brewing depressive state. i would get sick for long, long periods of time and there would be no reason for it. had i known then what i had (endo, adeno, fibro, MFGT's) it would have made sense. two of the three are auto-immune diseases. i get a cold, and i really get it. i lose my voice, and it's gone for months.

the only fast thing i've done is labour and delivery. it might seem strange to put the birth of my child in the pain category, however the story will explain why in a mo. i arrived at the hospital at 10am at 2cm dilated, upon exam by a nurse i pushed and my water broke, i was put in a wheelchair and brought to wait for a L&D room, outside the exam room and in the tiny hallway, there my insides tore open, quite literally, nerve damage, and rapid labour. i screamed and screamed and was told to wait while they got things ready. i mean. i thought i was dying. why was this happening so fast? my husband came back up as i was being brought into the room (i think, some details are fuzzy). i was examined by a doctor and was at 10cm. it hadn't been more than 10 minutes since i had arrived. i remember things moving too quickly for me and i was very panicked that something was wrong. i remember being told the boy's heartbeat was becoming compromised and we needed to get him out. options included a C-section, forceps, or the vacuum. all terrified me as i literally was without ANY pain management. we opted for the vacuum and they offered me laughing gas as a super sad knife-in-the-back compromise. i took it, but the hell? AT THAT VERY MOMENT I WANTED THE SWEET, SWEET NECTAR OF THE ALL POWERFUL EPIDURAL! four pushes with the vacuum on and the boy was born, at 10:35am. in 35 minutes i arrived at the hospital had my baby, like whatevs, and held him while being stitched up. naturally there were stitches. i can't even with that pain. OMG. people say you won't remember the labour pain and that 'it'll just go away when you see your perfect baby', you know what? they lied to your face, or they had an epidural, or they didn't experience rapid labour. 2-10 in 5 minutes. they did not teach me that in L&D class. i wanted ice chips, and the tub, and the playlist of music, and maybe a pelvic roll or two on the ball, but no, miles wanted his entrance to be dramatic and fast and it was nothing less than that.

any and all of the things i've battled have stayed with me like wearing a cloak, all day everyday i feel pain, whether it's physical, mental, emotional, or otherwise, i feel it. i can't see it but i fucking feel it. with diagnosis always come the waiting game of endless specialists, tests, interventions by way of oral medication, physical therapy, walking epidurals, suppositories in my ass or vag, chiropractor visits, along with visits to acupuncture, massage, GP, GYNE, and psychologists.

after a thirty year battle, and almost one year of keeping this in my drafts folder, i finally have felt an end to my endometriosis and adenomyosis pain. a hysterectomy and final excision of endo from nerve clusters fused together because of it, i can breathe. i can breathe clearly and without a constant fear of nausea, hot flashes, bizarre mood swings because of the menopausal state the IUD was causing, and chronic pelvic/back/low abdomen/bowel pain. i still have a 44 year old body and permanent nerve damage from rapid labour and negligence from a past surgeon, but holy hot hell it's nice to not want to punch people in the face for asking you how you feel. i know that's not a normal reaction to that question. i get that. however, as someone who has suffered from chronic pain her whole adult life, it is the hardest question to answer honestly. how you feel sometimes is like shit, or crap, or a god damn mess, or you just don't want to talk, especially to that person but you can't say it. so you answer, 'fine', 'great', or 'living the dream'. is the honest answer the best answer? it may not be, but it's the one with the least amount of follow up questions or lengthy conversation to follow. i love things, and flowers, and coffee, and white wine, and my man friend, and my kid, and my family, and a handful of others - but for the most part i would honestly prefer not to talk to anyone about anything. it's all the same conversation anyway. and i'm tired. tired of listening. tired of talking/hearing my own voice. tired of noise. in need of quiet and calm. my one year surgery anniversary is coming up and i'm looking forward to it. i have never looked forward to a post surgery anything because those have always led to more surgeries. but the doctor from brazil with the 'small hands' did the job this time. removed the death star and its accompanying bullshit organs (tubes and cervix) and we are good to go now. she works again, without pain 😉

surgeries for endometriosis & adenomyosis

2006 - laser laparoscopic discovery of endo

2009 - stage IV endo excision via laparoscopy

2015 - laser laparoscopic removal of endo & appendectomy

2016 - endo excision via laparoscopy

2019 - full hysterectomy (minus ovaries) and extensive endo excision on nerve clusters fused together

#hysterectomy #endometriosis #adenomyosis #fibromyalgia #depression #anxiety #rapid labour

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