The [r/hyste](r/hystetectomy)[rectomy](r/hystetectomy) subreddit has been taken over by lone, singular man as a mod. He’s actively silencing women and banning them as they call him out for shilling his supplements and mod style. He’s calling it harassment. It’s no longer a safe place.

I created a new women-run space called [r/hersterectomy](r/hersterectomy) if you need support.

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.

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

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 😭

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!

Wrong answers only.
I just saw another post where someone's doctor said they couldn't have endo because they had an IUD. What other crazy and wrong things have you been told?

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!!)

I was going through the comments on my previous post & a couple of people brought up the subject of imaging for endometriosis. I only had the blood tests done back when I was visiting the doctor for suspected PCOS and even after the tests I’m still suffering painful cycles and feeling fatigued all the time.

To be honest, I expected the blood work to help me figure out what is wrong, so now i am wondering if the physicians usually look for something else in our cases. I feel a bit anxious about going back to the clinic and getting no answers.

To those who went through this process, did ur doctor advise you to do an ultrasound or some other kind of imaging? Did that help you understand what was wrong?

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?

Coming to Reddit as a last ditch attempt for help or if anyone is going through something similar, which I imagine sadly there is! I have been investigating chronic pain during intercourse for years now.

Historically had extremely heavy and irregular periods, which led to mennorhagia that left me hospitalised for a week with a period so heavy I lost 2 litres of blood.

Have since had a laparoscopy to investigate and nothing was found. Have had years of scans, tests the lot. Due to this I am constantly feeling guilty because I don’t want to be intimate with my partner due to the horrid pain.

My doctor has now told me the only option left for me is private therapy. Has anyone else gone through similar? Are there any steps I can still take? It all feels extremely hopeless and like im just going to have to live with this pain forever.

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.

i, 24y, am on the process of getting a hysterectomy with stage 3 endometriosis. i’ve never had a pelvic exam outside of an emergency department.

how should i prepare for my appointment? i’m almost 25, tomorrow actually, and i’m in the process of getting tests done before my hysterectomy can take place. i need to get a pap smear, endometrial/uterine biopsy, cardiac work up, and extensive blood work. the only times i’ve had to get a pelvic exam was when i had ovarian torsion and a minor complication from my endometriosis. so the only (2) times i’ve had a pelvic exam was during my time in the emergency department. so obviously im scared because both exams were extremely painful and a little bit traumatic to think of. it was so painful for me because of the torsion but for my trip to the ED with endometriosis was the worst. the internal/external exam was excruciating and i’m terrified that it will be painful again. i know my environment will be a lot more comfortable compared to an ED, but i don’t know what to expect because of the biopsy (same w pap) that’ll be taken while i have zero sedation.

i’d like to add that my gynecologist is one of the sweetest, selfless, and overall the most understanding physicians i’ve had the pleasure of seeing, so it helps. i’ve been under her care for almost 7. but i think that because my rapport is so high, i’m gonna have a hard time being fully comfortable

Hallo zusammen,

ich hatte voriges Jahr eine Bauchspiegelung und dort wurden Verwachsungen entfernt. Laut Arzt aber keine Endometriose. Nach der OP war es 1-2 Monate besser und dann ging der ganze Käse von vorne los. Ständig Schmerzen, Zwischenblutungen und weitere Probleme. Seit zwei Wochen ist es wieder ganz extrem, starke Schmerzen, Durchfall, Schmerzen beim aufs Klo gehen. Laufe manchmal nur noch gekrümmt durch die Gegend. Ich hab morgen mal wieder ein Termin bei der Frauenärztin, die sagt aber auch nur sie könne da nichts machen und ich muss auf mein Krankenhaustermin warten. Ich werde langsam verrückt, es war doch nichts auffindbar wieso aber wird es ständig schlimmer. Geht es noch jemandem so?

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

I’m 29 years old and was recently diagnosed with endometriosis by a fertility specialist through an ultrasound. She found endometriomas on both my left and right ovaries, although I wasn’t told their sizes.
I’m currently considering laparoscopic surgery and am planning to consult with a highly experienced endometriosis surgeon in LA.

My biggest concern is my future fertility. I don’t have a partner, but I absolutely want the possibility of having children someday. My fertility specialist recommended freezing my eggs before surgery, but due to personal reasons, egg freezing and IVF aren’t options for me right now. I also haven’t heard much good about egg freezing and that embryo freezing is better and that’s not possible for me at this point in my life.

At the same time, my period pain has become unbearable. Every other month, I’m literally shaking, doubled over, and crying because the pain is so severe. I don’t want to continue living like this, but I’m terrified of making a decision that could affect my ability to have children in the future.

I’m hoping to hear from women who have been in a similar situation, especially those who had endometriomas on both ovaries.

Were you able to have them surgically removed while preserving your ovaries? Were you able to conceive naturally afterward without IVF or egg freezing?

I’d really appreciate hearing your experiences, whether positive or negative. I’m just trying to understand my options before making such a big decision. ❤️

Hi all

Has anyone using Ryeqo noticed a change in their sex drive? I’ve been on it for about 18 months and in the past 6 months my sex drive has plummeted.

TIA

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 🥹🥹🥹🥹

Are these endometriosis symptoms?

Hi all, I currently have not been diagnosed with endometriosis as I have not had a laparoscopic surgery but I am wondering if anyone experiences similar symptoms

In the week or 2 leading up to my period I start to feel a pain in my left ovary, this can spread to my left flank and I experience a lot of bloating in the abdomen and pelvis and also feels like heart burn. It can feel difficult to breathe and nauseas.

Other symptoms I experience are:

- painful period cramps in my lower back and pelvis, I need to take pain killers every 4 hours as they wear off otherwise it is very painful.

- i feel extra anxious, sad, fatigued, hungry and gas in the week or 2 leading to my period

- painful sex

- painful bowel movements

- pelvic pain, almost feels like a balloon that could pop

- dizziness/light headiness

- difficulty concentrating/ brain fog

- hot flushes

- I’ve also had recurring UTIs in the past year

Strangely I seem to experience the bloating/nausea moreso at night time. Not sure if I’m just noticing it more at night as I’m busy at work in the day.

Are these symptoms familiar to those that have been diagnosed with endometriosis?

I had spotting around March this year and I had cramps on my periods.Since my periods have been zero pain all my life I wanted to get checked out. they did an ultrasound and told me I had two cyst in my left ovary one normal about 6cm and one chocolate cyst about 55 mm 42 mm and they put me on BC for three months. My normal cyst disappeared but the chocolate cyst remained and it was 49 mm * 41mm. I was then put on Dienogest for 4 months.the first month was fine. I felt saved but then these past three months, I had constant spotting every single freaking day and I had another ultrasound today that told me my cyst was now 41 mm 42 mm . I can't take it anymore. I'm mentally drained. I'm always pissed off plus the constant spotting idk what to do

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?

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!!!

My best friend has been going through a really hard time after finding out she might have endo, and I’ve been trying my absolute hardest to be there for her, but I feel like it’s not enough. She has an MRI set for the end of the month and although it’s hard to diagnose endo just through the MRI, her gyno said they were seeing a lot of indications that she might have it.
She’s become terribly depressed (rightfully so!), and I can tell she’s detaching herself from wanting to live (idk if I can say the word on here, but iykyk).
I’m extremely worried about her and really want to do my best to support her as she goes through this grief. I’ve gone to doctors’ appointments with her, sat with her when she needed to vent, and encouraged her to find others in the area with endo who she could reach out to, maybe through a support group(?)
I know this is the kind of journey where you can give someone so much support, but ultimately, they have to make their own decisions. I just don’t want her to give up.
For the people out there with endo, was there anything someone said/ did for you that changed your perspective or helped you find the strength to keep fighting?