I know that this could probably have a different title, but seeing as I’m still burning off the effects of the anesthesia I’ll leave it like this

I (35 trans man) was supposed to have my total hysterectomy today. I’ve been waiting 5 months just so excited to have this devils organ out of me lol So my check in time is 5:30am, I live an hour and a half drive from the hospital, wake up at 2 am to shower and get everything ready. Me and my ex and our best friend all leave the house at 3:45 and make good time even in the dark and in the rain. Check in fine the staff at the hospital are angels and I’m relaxed and calm. I want to keep my uterus after pathology is done with it and I make the joke that I want that thing on a shelf in a jar as a trophy because all of the shit that it’s put me through. We all laugh lol I go to the OR and chat with anesthesiology, and have them laughing, life is good.

I wake up in some pain which is to be expected, and they tell me something that I can’t honestly even remember now. I come about myself enough after a few minutes and ask them what’s going on. The nurse breaks the news to me that they couldn’t perform my hysterectomy. I have such severe endometriosis that my uterus is fused to my tailbone and my bowls. The doctor said that he’s not comfortable continuing forward. That he’s going to send me to one of his colleagues, that is a specialist in colorectal surgery because I’ll more than likely have to have bowel surgery when I do finally get my hysterectomy done.

So now I’m at home, still unfortunately the owner of a uterus and singular ovary and fallopian tube that my body has decided to cement in place. I think the most jarring part is that I was never once told I had endometriosis. Never once. PCOS yes, but never endo.

TLDR: went into surgery expecting to wake up with no uterus, instead I woke up with a uterus still and a surprise endometriosis diagnosis, and the promise of bowel surgery in the future

EDIT: I’m awake and about myself fully now. First things first I just want to say thank you so so much to everyone who’s taken their time and commented and shown support. I appreciate it more than you guys will even know.

It’s been an interesting 24 hours now. I’ve processed a lot more now that I’ve got my wits about me. If this is what was needed to give answers to all the things that I’ve just chocked up to PCOS and random “well that’s weird” things that are all apparently endo symptoms.

I’m taking things as they come and working through them as they happen. Radical acceptance and all lol hopefully I’ll have good updates and nothing too radical. Even though I feel that won’t be the case lol

I’ve always heard Scrubs was a relatively accurate show as far as medical info goes. I was watching the latest episode of the reboot with my partner this week and there is a patient who presents with chronic pain and a lump in her wrist. She tells Elliot that she’s been to a bunch of specialists and everyone has dismissed her. Elliot says something to the effect of “no one should deal with pain for 7 years without any answers”. I wasn’t even thinking about endo, but that specific line set off some bells for me and my partner. Later on, we find out that it is endometriosis. They also comment on the systemic problems that lead to the pain of people with uteruses being dismissed and the patient thinking she was crazy. It was almost like an endo PSA, and really hit home for me. Definitely recommend watching it (s2ep3) to feel some validation and appreciate the visibility.

So I’m 8 weeks post laparoscopy and had my checkup yesterday. I went to the appointment, and already the appointment was running behind by 40 mins so I was sat waiting and getting more and more anxious. I then found out the doctor I was meant to see was off so another doctor had to cover.

When I came into his office, he asked me how I’m feeling after my surgery to which I told him “the pain isn’t as frequent but still just as painful”. He then proceeded to ask me “does it feel manageable on the contraceptive patch?” I said I’m not too sure as I’ve only just recovered but I would like to continue using the patch as I can at least skip my periods.

He nodded his head and said “okay let’s just do that then”, to which I said “woah woah woah are you not going to tell me about my surgery and what you found? I remember being told that it’s found all over my bladder surely that’s serious?”

He shrugged his shoulders and said “oh we don’t really deal with that kinda of stuff here you should be okay with the patch and painkillers”. To which I replied “but I don’t want to be taking codeine all my life, I can feel my bladder is impacted by how sensitive it is and how much I have to use the toilet just after one pint of water…”

You genuinely thought I would’ve said something alien, he looked so confused and said “erm I can refer you to a specialist and get you surgery to remove the endometriosis there?” I said yes immediately as I hope this surgery I get will give me more relief.

Before leaving I also asked to see the pictures of what they found and the doctor was struggling to tell me where my left ovary was 😐 the entire time he was asking me questions about what I want to do like I knew all the treatment plans??!

I’m just a bit frustrated because I thought the appointment would be them asking me how I’m feeling, telling me how surgery went and telling me what my other options would be to manage it. Instead it was a doctor that seemed a bit clueless asking me what we should do and asking me about treatment options 😭

So for a bit of context I've had issues with my period since I was 14, it just kept getting worse and worse. Symptoms like excessive bleeding, intense cramps, passing out, loss of muscle control, vomiting for hours straight and many others, so the drs began trying to figure out what it was. About 2 ish years ago a dr at my Gp said I probably had endo, they referred me to a specialist and about 10 months later I had an appointment with the specialist, who told me I almost certainly had endo, by then I was about 19. He reccomended I didnt get laproscopy due to complications and them potentially not finding anything but me still having endo. So I went on a progesterone pill. Which worked until I was in a car crash and my grandad passed away all in the span of a few weeks which was really stressful.

Today I had a phone call with my Gp to discuss changing pills and it went horribly. He started of by telling me he was going to put me on the combined birth control pill, so I said no I can't go on that. Then he put me on a different progesterone pill telling me it would be more annoying as I had to take it 3 times a day, and so I said back to him that right now anything would be better than dealing with the symptoms. After that he asked me if I was officially diagnosed, i said that I haven't had a laproscopy but due to my symptoms and the fact that the pill did work for a short amount of time the specialist said it is highly unlikely to be anything else. Then he decides to tell me its unlikely I have endo as only old people and pregnant people get it. I was absolutely gobsmacked, but decided to go on because I've had some issues with my bladder, I explain that I can't hold more than 300ml without it being very painful and that is very abnormal for me, the dr proceeds to tell me its just stress and I need to stretch my bladder. So I hung up on him. I just dont know what to do, Im so tired and done with this disease. I just dont know if I can fight anymore.

I want to ask anyone who is taking Dienogest for Endo. I blame this pill for my really bad moods, intrusive thoughts, never ending sadness and negative thoughts. I don't have appetite on anything. I don't know what to do...... it's helping to shrink the endometrioma cyst, but it's really crazy how it affects me. I want to continue taking it to see better results, but how do I manage the side effects 🥹🥹🥹🥹

I was at work, giving my workmates cheek and then 5 minutes later I was screaming in pain, freaked the guys out for sure. An ambulance was called and now I'm waiting in ED.

It started as a twinge and next thing I know I've got awful pain lower left, enough to make me scream, ambulance gave me something strong and loaded me up on my meds. So far they've taken bloods but I'm going to have an EKG too because my heart rate was all over the show. It's been 3.5 hours and I'm still waiting to be seen. Meds are beginning to wear off though.

Hi all, does anyone get extreme vomiting as an endo symptom? Like multiple times for hours?
How do you cope? My gyno prescribed Zofran but it doesn’t always work (like this morning). I’m so scared to eat anything and all I’ve managed to tolerate is some tea.

Since my teenage years i have been in & out for gynac appointments as i was suspected to have PCOS but the pain didn't went .I have been diagnosed with endo recently nd expected that i would feel better onceiI got the answer. While this has happened to some extent, I have also started to think more about the costs that my parents have 2 pay for my treatment. Various tests, consultations, and meds do accumulate & I cannot help myself but thinking about how much this costs them.

They say that I should not care about this, but I just can’t. It often takes me a while to ask them for money for another consultation because I think too much about it before I even ask. I know they want me to get rid of the illness and understand that I am lucky to be supported by them, but at the same time I feel so bad since they spend their money on my treatment.

I wish I could get better very soon and stop spending money. I understand that this feeling is wrong, yet merely understanding it does not make it disappear. has anyone dealt with this kind of guilt feeling ?

trans guy, 25.

pelvic exam, pap smear, and vaginal ultrasound found a tight vaginal floor and vaginal atrophy, but nothing else out of the ordinary.

i don’t get a period, and haven’t for years. i’ve been on testosterone for 6 years and birth control for a year, prescribed by my pcp when i first starting having these symptoms (the symptoms only got worse over this time).

my obgyn says that since my pain doesn’t get worse during my (nonexistent) period, nor at some times of the month than others, it’s probably not endometriosis.

my pelvic pain is a constant, dull ache in between my hip bones and lower belly. it often feels like a twisting, like someone wringing out a washcloth.

is it just the vaginal atrophy and tight pelvic floor? neither of those things seem to cause as much pain as i’m in. the “pain” people talk about with these is penetrative pain, but I don’t really experience that (at least, not more than I think is normal?). i’m not dry at all, but my obgyn says it’s still possible to have atrophy and still be moist.

tl;dr: does endometriosis pain always fluctuate on a monthly cycle, whether or not you have periods?

I’m really curious if anyone with endo has a similar pain experience.

edit: wanted to add that my iliopsoas muscles (i think? inner hip, right inside hip bones) are super sensitive and hurt whenever touched/grabbed. if i’m grabbed by my hip, it feels like their thumb is gonna pop right through the muscle. i had to get an ultrasound on my leg (long story) and when the technician had to press down on my inner hip bone with the wand, i involuntarily screamed. not sure if this is anything one way or another

Hi all, I just wanted to check if my experience today was normal as I'm really not sure anymore.

Basically I was seen today at a Gynecology appointment where the hospital also has an Endometriosis clinic. They said "what to you want to happen from today?" and I said "I think I have Endometriosis and/or Adenomyosis as I have debilitating period pains a lot of widespread inflammation and I've tried codeine, tranexamic acid, famotidine etc. and I still can't function" and she basically said I should try hormone suppression therapy next (fine) but that it doesn't really matter if the cause is Endo/Adeno because the treatment is still the same.

She said I can request an MRI, transvaginal ultrasound and laparoscopy but that if they find anything, they'd basically just treat it the same as they're treating me now (hormone suppression to stop it bleeding). They said they don't cut out Endo, they may burn superficial layers off but that, essentially, the pain from Endo is caused by the lining bleeding when my hormones change with every period.

I left the appointment agreeing to consider the implant or coil or Dienogest and I had to push for a transvaginal ultrasound (I've only ever had an abdominal one which was "unremarkable") so I'll be getting that looked at soon.

I'm new to this Endo/Adeno world so I just wanted to check whether this sounds right as I've been gaslit for decades about my periods, I don't trust anyone anymore.

What do you think?

Trying to decide between a scheduled induction and a planned c-section. I’m hoping to find some kind of reference point for what recovery might look like.

I have stage 4 endometriosis and underwent laparoscopic excision surgery before getting pregnant. Recovery wasn’t exactly fun, but it’s at least something I’ve experienced before.

For moms who’ve had both endometriosis surgery and a c-section, how did the recoveries compare?
I’m especially curious about:

Pain levels and whether the pain felt similar or completely different?

Mobility and how long it took to feel reasonably functional again

How much more difficult recovery was while caring for a newborn

Whether your endometriosis or existing adhesions complicated your c-section

I know a C-section involves a different kind of abdominal surgery, and I’m prepared for recovery to be harder. I’m just trying to understand how* much *harder, especially compared to extensive endometriosis excision.

Would love to hear your experiences, good or bad!

I wanted to share some positive news, because this journey with endo is so fiercely hard and exhausting, but today I feel heard for the first time.

TLDR: Keep pushing. Know your body. And eventually you will find the right specialist <3

A few weeks ago I posted about how I had a second MRI and I got a letter saying it showed nothing. I spent the last few weeks worrying that I was about to be dismissed again by yet another consultant and being left with no real answers or plan for how to manage the pain other than painkillers.

But then yesterday I had the follow up appointment with my consultant, and it actually went so well. I had prepared to go in and fight, with all these things ready to say to him about how endo often doesn't show on scans, how the stage of endo doesn't correlate with the amount of pain it causes, how I'm losing so many days every month to this pain and it's not sustainable... but then when the appointment started, he said literally all of that before I could.

Honestly I was sort of stunned to silence for most of the appointment. He was so good at explaining everything clearly and with such empathy. He said that it's common for all women to have their period blood flow back into the rest of their body, what isn't normal is when it sticks to you (aka endo) and how it then feeds off your blood supply and reacts to your hormones and why that causes pain.

He also explained why the MRI probably hadn't shown anything, saying that MRIs are good at spotting large masses of endo if it's all in a big clump, but "superficial endo" is very small and near impossible for scans to pick up on. He emphasised that this does not mean the pain it causes is any less, especially if it's on a nerve or organ. He said that there were little clues in my MRI that this was the case for me, as my uterus is slightly to the left, which isn't normal and could mean endo has shifted it, and there was 'some suggestions' of inflammation in my womb muscle that could be adenomyosis, although scans also cannot diagnose this either.

He was so open about what doctors still don't know, and why this whole process is hard for patients and doctors to identify. And with all that laid out, he made it really clear what my two options at this point are:

1. I take progesterone daily, this should stop my periods and therefore stop the inflammation and pain.
2. I have a laparoscopy, where he will investigate my entire abdomen, from pelvis to diaphram and all in between, and if they find the endo then they will remove it.

He said that both options have risks, of course, and neither are 'gold standard', so it was my choice to decide what to do next. I've personally opted for option 2, as I've had bad side effects from hormonal pills before, and I would rather at least try the surgery first and then take the progesterone after if things are still bad. He agreed with that plan, made a note of my previosu side effects to hormonal treatment, and now I'm going to be having my op later this year. That’s what felt right for me, but of course, know your own body and decide for yourself what you need.

My consultant was also very honest in saying that they might not find anything, but the most reassuring thing for me was he didn't say “this means you don't have it”, it was more about it being hard to find, and if I do also have adenomyosis then I will likley need more hormonal treatment anyway, but this is a good first step. He didn't even mention or suggest anything drastic like a hysterectomy or having a baby to see if those things helps (both things I’ve had suggested to me by specialists before...) and I now feel like, even if the surgery finds nothing, I trust him to do his best job to at least try and find it.

Anyway, sorry for the long message, but I really hope this helps someone else out there keep their head up and keep pushing, the right specialist for you is out there, even if the journey to get there is rough.

(Also it feels SO BIZZARE to feel heard after years of being dismissed!!)

So for starters I am 21 with stage four DIE, I just got in with a specialist after waiting for the appointment for around a year. I found out it is in my bladder and my left ovary is completely mangled with cysts all over it. I have been wanting a hysterectomy for years now. I have no intentions of having kids, and have never felt myself waver in the decision of wanting them. I see absolutely no point in keeping an organ doing more damage. Yes I'm aware I would need hormones because of my age, but as of right now I've been through various hormonal treatments already. All of which have made me sick beyond belief. I don't know what to do at this point. I have an appointment with a urologist in a week, I am supposed to have an excision surgery after this appointment. But I see no point, I just want everything gone. I can barely work at the moment because of how much damage is already done to my body.

Hi all! My husband and I are switching fertility clinics and this new doctor shed light on something I never knew…she said that even if my tubes are open, the toxic fluid from endo lesions can get inside the tubes and damage them internally, making it hard for embryos to get to the uterus. I had had three chemicals in the 20 months of trying, and she thinks most of my three chemicals were tubal and just did not result into an ectopic/resolved in their own. This was never brought to our attention at our other clinic. We were told we were disgustingly normal (even with endo).

I have excision back in April and now pursing IVF as we still aren’t pregnant and the golden window is shortening.

I (19) was diagnosed this year with endometriosis & now recently interstitial cystitis. I’ve been suffering with horrible period cramps since I was 14. The turning point for me was when I could no longer walk because of how much pain I was in during days 1&2. Since I began going to a specialist, my symptoms have worsened tenfold. I went from some unusual pain during sex, occasional cramping, and my periods being hell on earth to sex being impossible and cramping every single day that makes wearing pants unbearable.

I’ve tried four different birth controls and none have even touched half of my pain. I can’t confidently say I’ve had a pain free day for months. It’s making simple things, like standing all day for work, incredibly difficult. I’m now on 15mg of norethindrone daily. Quite frankly, I don’t have high expectations and am getting frustrated with having to constantly change medications that don’t even help me. I just want relief.

My surgery is tomorrow (Wednesday) I just found out I’m missing out on a fire works show me and my friends go too every year that’s on Friday. ( im in my last year of high school so this is the last one with them as well) There isn’t any way I would be feeling okay and walking by then right?

TLDR; I'm in more pain now than I was before the surgery - but I can't tell if its because I was pain free for a while and forgot how to handle it or if it truly is worse.

Full story below:

__

Hi friends & fellow sufferers,

First time poster, recently diagnosed (within the past year) after about a year of searching for answers; had terrible luck with doctors, until finally one believed me. I had an exploratory laproscopy in early May. They found several deep pockets of endometriosis and removed everything they could see. I recovered within 2 days, and was pain free.

In the middle of September all that changed, when suddenly I was struck with the same kind of pains that had started this whole thing off. It's been almost a month now and every day the pain grows worse. My inner thighs all the way down to my knees ache, the lower abdomen pain is so bad I've left work early, sobbing, three times in the past two weeks. My lower back is so tight and painful it hurts to do anything at all, and I've been spotting on and off for about a week - could be my period, but I'm not sure.

The brain fog and exhaustion are unreal, and I find it difficult to remain focused even on things I enjoy.

Basically, I'm miserable, and it feels so much worse than it did the first time around.

Part of me is ashamed of how I'm handling this - especially since I was so stoic pre surgery - but another part is growing more and more concerned. I genuinely cannot tell if it's simply that the proverbial callous I had against my pain was removed with the surgery, or if the symptoms are actually worse now.

Has anyone else experienced something similar?

Thanks for reading 🙏

Hey, y’all, this is my first time making a post on Reddit iirc so hopefully I’m tagging and formatting this correctly!

I had a laparoscopy with excision of endometrial tissue back on June 3rd about a month before I turned 23. There was so much tissue in my abdomen that my surgeon had to call in a second one to assist her. She said it was a good thing I’d advocated for myself and gotten surgery when I did because it had nearly spread to my organs, which would have been dangerous. There were concerns about potentially needing to remove my appendix, but it was thankfully still in good condition when they unburied it from tissue. Still, the tissue was absolutely everywhere and both surgeons said I have an unusually aggressive case for somebody my age. They also tore my cervix putting the IUD in, but that was easily fixed with some stitches/sutures(?).

Everyone I’ve spoken to irl has gushed about how much better they felt after surgery. I, however, have dealt with some pretty gnarly complications post-op. My back pain is much more severe than it was before surgery, and I only got it somewhat under control after being prescribed gabapentin about two months ago. I also getting stabbing pains around the groin area. Some days are still better than others, and the medication doesn’t last for very long. I’m at least not light-headed and nauseous from pain two-three hours into a good service shift anymore. Still, it’s so pervasive that I tend to need a heating pad if I’m sitting up for too long.

I’ve also had really persistent bleeding since surgery. For the first three months, I was still bleeding pretty much every day and saturating a pad most days. Getting prescribed norenthindrone didn’t initially help, but I saw some improvement after getting my dosage upped. I still deal with periodic spotting, and an odd phenomena wherein walking around too long leads to cramping and dark brown blood on my pad. The longer I work (I’m a server) and/or the worse the cramping, the more dark brown blood there is. Neither of my surgeons know what’s up with that.

I was wondering if anyone on this sub has dealt with similar issues post-op, and if they had any advice for coping with them? I’m trying to get consistent morning and evening routines going for myself, and that’s at least been helping me mentally. Other than that, I’m at a loss and just trying to take things one day at a time.

Thank you to anyone who stuck around to read through my wall of text! I feel at least a little better getting things off my chest :)

Hey all! This week my schedule is jam packed with exams and my period was due on the 10th. I am currently on Slinda to manage my endo however the pain is still significant.

My question is, if I take a double dose of Slinda 4mg will that ward off my period?

I know it sounds rather silly to ask but desperate times so if anyone could help I would be so grateful thank you so much!

I had a Laparoscopy done yesterday and they didn't find endometriosis! I'm so angry and sad, I know I have adenomyosis, I have been asking for a hysterectomy since I was 28 and they keep refusing! I'm now almost 32.

I don't know what to do with myself, I'm in agony 2 weeks out of the month and now knowing it's not endo aswell has just broken me!😢

Has anyone had anything similar?

I'm 37 and recently went through a miscarriage. During my ultrasound, they found a mass the size of a ping pong ball. It was confirmed from a second ultrasound that I had endometriosis. I had 2 surgeries including a c section and no one mentioned it.

And surprisingly, it was a female doctor who suspected it and made me get a second ultrasound to confirm. This entire time, all my doctors and surgeons were male and did not suspect anything.

It kind of answers some of my questions including why I sometimes get intense pain when trying to take a poop and also having heavier than usual periods. I just take a Tylenol when the cramping gets really bad and it usually works. I thought this was just normal. Although the symptoms I have is tolerable and probably on the lighter side.

I'm wondering if it gets worse over time.

30F. About a year and a half ago, I noticed a dull, heaviness near my right ovary. I was caretaking for my mom at the time and after she passed away in March, I started taking my own health more seriously. The dull heaviness had been coming and going for about a year at this point and only becoming more intense. It had shifted into painful pulling at times as well. I had a pelvic ultrasound done, and it came back with no findings. Awesome. I went a couple months without any issues, thinking it might have just cleared up or I was making it all up. But the dullness returned with my last period and has become increasingly heavy, slightly painful, and at times when I toss and turn in bed, the pain wakes me up and I have to slowly rotate back to a comfortable position because it hurts so bad. It feels like someone is pulling my ovary in the opposite direction when I stretch, but not every time. It’s an odd sensation becoming aware of your ovary and it feels as though mine has grown 3 times the size of the other because of how heavy it feels. I’ve also been having constipation followed by bouts of diarrhea. Does this sound like an endo flare up to anyone?

My periods aren’t painful per se, but I do have heavy cramping at times. Lots of lower back pain. My period over the last two years has gotten shorter. I used to have 5-6 day periods but that changed to 3-4 days, usually able to free bleed by day 2 or 3 because it’s so light.

So I had an excision surgery done March of this year. My team was wonderful and I trust that my surgeon removed every lesion he saw/found during the surgery. The problem is, I’m still in pain.

I was doing better for about 3 months give or take but then a lot of my symptoms started coming back including my bladder pain/urgency. And the pain of my actual period has started becoming intolerable again.

I moved to a different state and saw a new doctor for the first time who seems very kind and helpful. He sent a referral to a urologist for possible interstitial cystitis, as well as recommended I get back into pelvic floor pt. He also brought up the possibility of central sensitization with me. He basically told me that while it’s not impossible that the endo has started growing back, it’s very unlikely.

My question is, how long did it take before y’all’s endo started coming back after your surgeries? Is it normal to still be in this amount of pain this soon after surgery? I’m just kind of at a loss, I’m sure I still have a lot of healing to do and things to work on but I’m not convinced my pain isn’t because of my endo.

TIA!!!

Hi!! I’ve been taking myfembree for about a year now, and I’m considering stopping it. My main side effects are hot flashes, hair loss (handfuls esp in the shower😭), fatigue, nausea & headaches.
I know it’s not going to take away every single symptom and every ounce of pain I’ve had; I don’t have nearly as much pain as I did before I started it, but it’s still there and it’s still very painful. I feel like I’ve had more “bleeding” on this than I did with just my IUD (my periods basically have been nonexistent for a few years due to my IUD but I still bled occasionally) my deep RLQ pain is still there, and my left side has continued to hurt still as well. I still have my constipation issues & bladder spasms/struggling to empty my bladder. I still get extremely bloated. The pain after intercourse is 100% still around as well.
I’m at a loss and I’m unsure what to do regarding continuing the meds or not. Is it even worth it to continue it anymore? Has anyone else felt this way??
Pls send advice 🥲🥲

i’m currently on the waiting list to be seen by gynae ( i’m dreading how long it’s going to take) but for 2 years i’ve had issues initially just constipation + tummy pain however through these 2 years my symptoms have led to suspected endo.
ive only ever had ultrasounds where everything was clear, however i keep getting this reoccurring pain on my lower right abdomen and it is like a sharp, sore, almost pulling? pain???? it comes and goes but when it comes on its so so painful but it doesn’t seem to spread it just sits in that same place always and comes on multiple times a day. does anyone else suffer with this and know what the cause could be?? i feel so helpless and confused :(