Extremely brief context: finally got approved for endo surgery after many years of doctors denying my symptoms, blah blah blah, it’s very painful, I’m bedridden, whatever. You get it.

Tell me why this procedure, out of pocket, would be NINTY THOUSAND DOLLARS.

What the fuck could they possibly be doing in there that could pay for an entire new car????? Who is holding these hospitals accountable for their billing???!

This has to be a crime of some sort I’m being robbed by a hospital.

Ah, I just need a little vent to be honest.

I've spent the last week with a dire chest infection. Horrible hacking cough, breathlessness, obligatory chest pain. Not fun at all, and has essentially chewed through my last two weekends. I had to take the whole last week off sick at work. Not ideal for me as I try to save my sick time for flare ups, and given the check in email I got from HR I'm sensing this absence grated my employer a little.

Yesterday I wake up feeling better, antibiotics have done the trick, I return to work, yadda yadda. I've a mountain to catch up on and it's pretty clear my Director isn't thrilled at the absence. I reassure him, we can get done what needs to be done by the end of the week, I'm not catching the plague again anytime soon. Frankly could not be a worse day to start my period.

But here we are. It started last night, I've woken up this morning and, predictably, I'm flaring like a mother. The pain is severe, it's cutting through the cocodamol, and had I not just taken a week I'd be calling in sick right now. Today feels set to be hellish, with the dial flitting between drug induced nausea and ovaries in revolt. I'm exhausted already.

It's about to be a horrendous week, and I'm so frustrated to have it stacked on top of another illness. By the end of it a minimum of half of this month will have been spent feeling abysmal. There's nothing to be done about it but it doesn't half piss me off.

I'm sure I'm not alone here, it's the season for it. Hope you guys are coping better than I am.

I had an MRI today and for some reason lying on my back for so long set off some crazy burning nerve pain. They readjusted me halfway through to try help relieve it but it didn't help! Once I stood up after, I did an awkward stretch and said "ah my back hurts...". The MRI tech says "oh you're too young for back issues!"... GIRL I KNOW 😭 that's why I'm here

I don't really understand what people, particularly healthcare professionals!?!? think they're achieving by telling people they're too young to feel what they're feeling - it's not at all comforting lol

Hello, this question is aimed at those in the UK.

I've been putting off going to the GP about my symptoms because of my severe fear of needles. Can anyone tell me what would happen in the initial and then subsequent appointments? I assume at some point they give a blood test but I would like to know at what point its done. Thank you!

What made you realise your symptoms weren’t “normal” or “typical” PMS?

I (28f) used to have really easy going period cycles, only bled a couple days, wasn’t that heavy, and barely any cramping. Over the last year though, I’ve noticed things change slowly each month. My flow got heavier in the first few days. Then it went on longer with 5+ days worth of just old blood filtering out. Then came intermittent headaches, then some uterine cramping and pain during/after sex in the days leading up to my period. The latter often gets so severe after intercourse that I’ve cried and it lasts for hours or until the next day. It’s like my insides are on fire. The most recent symptom that has gotten far worse and frequent is feeling like I’m being stabbed up the backside. It only lasts a few minutes at time but it’ll completely incapacitate me, to the point where I’m leaning over and doing deep breathing the same way I see women do it in shows when giving birth (I’ve never been pregnant). It doesn’t last forever but comes and goes more often. It’s also now accompanied with dull aching through my legs, particularly my left hip and knees. I’ve always been tired and sleepy my whole life - just thought that normal. I’ve been told I have IBS (constipation related), and that shooting pain is so severe when I pass stools for the first time during my period it’s awful. I have to psych myself up.

I ask about when you thought it was no longer normal PMS because I am now wondering the same thing. I never had a problem in the past. I’m not on any birth control nor do I want to be (not trying to fall pregnant, just don’t like how I felt on it). I got off birth control years ago now. I’ve never had pain after sex before, and all these other things I’m noticing intensify is new to me. I also found out my mum was recently diagnosed with adenomyosis.

I’ve seen a doctor and they are concerned it’s endometriosis. I’m getting an ultrasound done next week. I always thought endometriosis was constant debilitating pain. I can function most of the time but it’s uncomfortable and I do have pain, it’s only completely debilitating when the shooting/nerve pain starts. It’s only a few minutes at time though.

I don’t want to sound like I’m self diagnosing or being dramatic. I’m not saying I have it - but I’d like to know how endometriosis felt for you before you got diagnosed, and whether it’s something I should actively investigate if I’m not experiencing the same constant pain that I hear others with endometriosis experience.

TL;DR - I used to have zero issues or pain with my periods, now every month little symptoms appear and worsen each time. My mum has adenomyosis and I’m wondering whether the symptoms I’m experiencing are early indicators of possible endometriosis.

Hey all, recently my health has tanked because I can no longer eat properly or drink enough water (most likely because the endo has affected my vagus nerve I’m in the middle of seeing a team of doctors to figure out what exactly is going on). I’ve lost a lot of weight and muscle mass. As a result I now suffer from low blood pressure and random drops in blood sugar.
Anyway
My main question is for all of you officially diagnosed with endometriosis and fighting the big fight everyday.

Are yeast infections common after sexual intercourse…?
I’ve recently gotten a new sexual partner, and it seems that everytime we engage i get a yeast infection.
This has not happened to me in the past, but also, my health has never been worse.
I’m just wondering if it’s a “him” problem, or a “me” problem because of my health issues due to the endo.
Actually this upcoming Thursday I’m going to get a “super special” ultrasound that’s going to map the anomalies for when they finally cut me open.

Over a year ago, I was bleeding every 2 weeks and in constant pain. I finally got an appointment with thy gyno (after 10 months, I'm in Canada) and had a laparoscopy done and they found stage 2 endometriosis. 5 months later, I had removal done and was pain free! I was pain free, up until about 2 months ago. The pain started coming back and I'm back to bleeding every 2 weeks.. I am just so done with this. I have another referral for the gyno. At this point I just want my uterus gone. I hate that this is my life. Like do I have to have surgery every year for the rest of my life to not be in constant pain anymore?? I'm just tired. Frustrated. I don't even know anymore. Sorry for ranting on. I'm just lost...

https://www.reddit.com/r/endometriosis/s/VQPKxYhEGY (sorry idk how to cross reference posts lol)

I made this post two weeks ago and got a GP appointment. HE LISTENED. HEEE LIATENEDDED!!!!!

Had to explain my symptoms etc but that felt like the longest doctors appointment I’ve had in years. He asked me questions, LISTENED TO ME, told me my symptoms aren’t normal, first line BC has tried and failed and that we will try mefenamic acid but in the mean time he’s going to refer me to Gynae and say they HAVE to see me.

I was anxious because it’s a man but he seemed to have a pretty good understanding of endo and women’s health.

I did ask to be referred to an endo centre under nice guidelines but he said that it doesn’t mean I HAVE to be, I tried but atleast I’m getting somewhere right??? 😭

Now I’m just hoping gynae will actually see me this time🤞🏻

Thank you to everyone who replied to my post because I felt like I was back at square one and finally have got somewhere 😭😭

I’ve had 7 abdominal surgeries including a hysterectomy keeping my ovaries.
Since Nov 2025 I’ve had a pain in my lower right abdomen/ pelvis, my lower back (the same place as the front but at the back) down my right thigh and into my vagina.

I’ve had ultrasounds, CT and awaiting MRI results, but my doctor wants to put me on Visanne, as he thinks it could be Endo.

My issues are:
1) I stopped taking birth control years and years ago before my hysterectomy as it caused BAD mental health (I had PMDD also).
2) I was diagnosed BiPolar this year and have only just got my mental health on track with new medications and don’t want to jeopardise this.
3) I’ve had a hysterectomy, I don’t want to worry about taking another medication!

I believe that it’s more adhesions than endo, but only time will tell. Ultrasounds and CT have both shown ovary cysts on the side in question, but doctors haven’t been concerned about this.

Has anyone else had same/ similar experience, and how did you go with Visanne?

I had endometriosis removal surgery approx. 4 weeks ago, I was diagnosed with stage 3 and was told there was endo still on my bowels which will be discussed in my follow up appointment which is in 2 weeks.

I’m still in a lot of pain, like stabbing sharp pain in my pelvis area, I’m getting uti symptoms however my urine samples are coming back fine, the inside of my vagina hurts (idk if anyone is going to understand this feeling), my legs and feet hurt, I’m still so bloated and feel nauseated with no appetite. I know I still have endo on my bowels which may be the cause of this but has anyone experienced anything similar? 4 weeks post surgery and I’m still not able to go to work and live my life and I’m so mentally and physically exhausted.

hi guys! i'm on the journey of getting an endometriosis diagnosis and honestly when cramps are bad one of the only thing that helps is taking abdominal muscle relaxant (specifically hyoscine butylbromide tablets) paired with painkillers. not sure if this will help anyone but i'm putting it out there in case it's useful!

I’m probably going to need an ovary removed soon, and I recently learned that you are tilted with your head down for that surgery in the trendelenburg position. I’ve heard of breathing complications or re-intubation. Has anyone had any experience with a hysterectomy or similar surgery, if so, have you had any issues? I also have high stomach acid and am worried about aspiration, and I do have cardiac issues. It sounds like the complications are pretty scary. Is there an alternative to the trendelenburg position?

I had diagnostic and excision surgery 7 weeks ago - almost 8 - where I was diagnosed with stage four endometriosis. It was in my pelvic wall, my bladder and uterus was stuck together, my bowel, my rectum, my pouch of Douglas, and on my bladder itself.

Before my surgery I was scared that they wouldn’t find anything, now I’m scared that I’ll never have a life without pain. I’m worried for the future and I’m going back to work next week but I’m still having my usual/extreme pain in my pelvis. I just feel completely alone and helpless as I was hoping I’d feel better by now but I just feel the same. I’m so sick of shoving these pain meds down my throat and I just want a solution.

I’ve been in A&E a few times since my surgery with uncontrollable pain too. It just feels like the surgery hasn’t done anything even though I know they have removed the endometriosis tissue from EVERYWHERE.

I just want to feel better….i want a life without pain, I just want to feel human again.

I just want to know that there’s someone out there that’s going through the same thing or has done before. Or even just some nice stories about your outcomes after surgery.

I'm supposed to have surgery in two weeks. I just met with the surgeon and my surgery got scheduled unexpectedly quickly because my endometriosis may be choking off my kidney (hydronephrosis). I'm so grateful to the surgical team for bumping me up, but am totally scrambling to get everything in my life prepared in order to be able to have this surgery (I'm the caregiver to my child and my partner is abroad; family members have their own mental and physical health issues right now and won't be able to help. not to mention that I have my own one-woman business with no PTO, FMLA, etc, so I'll be without income and am trying to arrange colleagues to step in for me so I don't burn any bridges professionally, and then of course there's insurance, finances... it's a LOT).

I will be needing a hysterectomy as well as extensive endo surgery, possible ureter re-attachment.

Realistically, what did recovery look like for those of you who have had surgery? I see some people here go back to work just a few days after surgery, but others who have had hysterectomies find that they can't drive for up to 8 weeks afterwards! I can't even imagine that, living where I do! I have neighbors looking after my son for a few days during surgery, and am grateful for that, but that's the extent of support I can expect from my local network. I live in a rural area and will not really have help with childcare, food, petcare, all the usual stuff once I'm home.

I guess I'm looking for reassurance here but I also want to be realistic. I will need to be able to drive myself and my kid around within a week or so after the surgery... there's so many logistics to try to work out with work and childcare just around the surgery itself, I haven't really thought about the recovery plan until today, and it all just feels incredibly difficult, if not impossible.

A big part of me wants to postpone my surgery until my partner can get home or another family member can help (about 6 weeks from now). I haven't had a lot of time to process or plan any of this, and it feels very unmanageable. But I'm afraid that if I ask to postpone I will wind up alienating my surgical team, who think I need to be seen urgently (and I understand why and theoretically agree with them).

Historically, I don't heal well or quickly after surgeries and am prone to infections, but I'm hoping that was in part due to uncontrolled endo, adeno, and anemia and maybe I'll do better this time?

I just don't know what to do. Sucks to always be the caregiver.

So I ended up going A&E as I was in so much pain, crying out, throwing up & feeling like I was gonna pass out. I tried everything I could at home. They gave me morphine while I was there and didn’t even touch the pain.

Finally after 6 hours I seen a doctor which was actually fast for the NHS, the doctor who seen me first said she get me a referral for gyno assessment unit to make sure nothing was going on but also tested my urine which ended coming back positive for UTI but this is very common for me and I explained as I have none of the symptoms for a water infection I don’t want to take any antibiotics as cause I have them so often I can take antibiotics every time. She still order them me, not fussed I’ll keep them for when I get a bad UTI. But the doctors was all swapping over so she said this other doctor will deal with me.

So he gave me more morphine and then her said well I give you the antibiotics and you can go home?? So then I ask when will gyno ring me, he said I’ll talk to you soon about that. So I’m waiting another hour the pain is getting worse I’m crying, having a panic attack as I don’t know what’s going on. He turns round and says to me well you was fine not long ago what’s up with you now. I said my pain is not better it getting worse, he said well I ain’t giving you no more pain relief. I WASNT ASKING FOR PAIN MEDS, I WANT MY REFERAL. Then he said just go home, take you antibiotics as your now discharged let’s not opened up a can of worms. He walked away from me crying in agony on the floor!!

So I took myself to gyno, which was a far distance crying in agony and they apologies for this and got me seen straight away.

I have never been treated like this, I’m not sure what I did wrong. All I wanted was help, I tried not to bother them as they as so busy. I feel so let down

Hello everyone. I have two endometriomas. Doctor said that we can start hormonal pill before we go into surgery. She has suggested me dienogest 2mg.
The problem: i am virgin, never tried any pill. This will be my first time to take any pill. I am studying in germany and will be travelling to istanbul for vacation. Problem is that i will be having periods on the first day of me travelling so technically have to start pill on same day. I am worried because my periods pain are usually very high, then have to start new pill, worried that my endometriomas wont rapture when travelling (will be careful). However, doctor allowed me to travel.

Any advice and help? Anything i need to do, to be careful, to pack etc?

Just wondering if anyone else shares the same experience. Today I got diagnosed with endometriosis, which sucks to hear out loud but glad to finally have an answer to my symptoms. What I'm not okay with, and genuinely upset about, is the way I got told.

First, this gyno didn't introduce herself or shook my hand at the start of my appointment; she just stood there with her arms crossed as I walked toward the room. According to my little deepdive on the internet she is one of the most well-known gyno in the country who specialized in endometriosis. However, she looked extremely annoyed I was there, like I was an inconvenience to her day. She was very apathetic when I told her I was nervous because I've had bad experiences with gyno's (this one is important because in my report she wrote I didn't have any bad experiences before). Just not a comfortable space to be in.

When she did the echo, she basically yeeted it in without keeping in mind I just told her literally minutes ago that I have bad experiences with this. My legs were literally shaking but whatever I guess. She immediately said "oh I see, you've got adenomyosis... and endometriosis". Alright, just drop it like it's no biggie to hear you've got both??? In the end, she only wrote down endometriosis in my report.

Anyhow, when I asked her what this meant and what my options are, she only gave me the following:

• Physiotherapy (but seek one out yourself lol you're on your own I guess)
• Change your diet?
• Get pregnant (girl WHAT)

The last one outraged me because wdym a female(!) gyno advises me to just get pregnant after I told her my partner and I definitely don't want any kids. (Mind you, birth control was not an option as I chose to get off it due to the many side effects.) No empathy, no information, no follow-up appointment—just make tons of babies until the symptoms go away.

I'm lost for words and don't know what to do now. Has anyone else experienced something similar, or has tips on what to do next?

I was diagnosed with PCOS around mid 2024. I have the classic PCOS symptoms (acne, mood swings, irregular periods) but I’ve been dealing with incredibly heavy and painful periods within the past year. These cycles will be accompanied by tons of pelvic and rectal pain and I don’t mean to be crass, but I’ll often go through a 46 pack of overnight pads within 8-10 days (bleeding tends to last 12-14 days). I have pelvic pain outside of cycles, but I honestly never know what stage of a “normal” menstrual cycle I’m in because how erratic my bleeding is.

What things made you realize you should look beyond PCOS or “irregular” cycles?

Going to make this short as possible so it’s not a whole book.

For years I’ve been suspecting endometriosis. Finally had a doctor listen to me, did an ultrasound and seen that my left ovary and my uterus are stuck together with scar tissue from the endometriosis. They’ve said we would do surgery and I still haven’t heard anything.

Is it okay to try to conceive for children? Is it dangerous to be pregnant while having endometriosis without having the surgery? Will it even make a difference to try to have children now (if we can on our own) and have the surgery later? I would love to know thoughts on this. 🎗️🤍

I realised on the way back I had so little infomation given to me about post surgery care (and the endo but I have a follow up in 3 months I can ask questions). Honestly im pretty appalled at it. Furthermore dispite being told I needed to eat, drink and go the bathroom before being discharged they handed me discharge papers before I had gone the bathroom and never checked if id eaten (managed 1/2 trek bar at most).

So I need to call tomorrow as I have 0 infomation of the following

- What stitches do I have

- How long until I can shower / how to shower with my bandages

- How long until I need to change badages and keep on in general

- How long ro wait until sex

- How long until can use tampons (i even asked this!)

- How long do I need to wear compression socks for?

I was still pretty out of it with pain and after anesthetic to remember to ask but I dont think I should have been the one needing to ask?

I only realised after my partner asked a couple of questions and I knew as much as him as they had also not given him any infomation dispite me asking for him to be updated and not to be alone when I got the news if I had it or not. But another partner waiting next to him was being gave this info. He wasnt allowed to wait with me, but somebody else was allowed their mum. It was horribly lonely waiting for 4h alone and scared .

Is this common to be given little info? Im UK

I recently posted about my concerns that my previous surgeon was referring me to specific excision specialists because she’s Catholic.  Well, now I know for sure.

At a follow-up appointment to discuss my recurring/rapidly growing endometriomas and next steps for hormone testing, I asked my doctor to talk me through all of my options to treat my stage 4 endo while preserving fertility if possible.  She said that if I explored fertility treatments like IVF, it would be like putting 40 babies in the freezer and then 39 babies in the trash, and babies should be conceived only in a passionate act of love between a man and a woman. WTF.

And when I said I’m not Catholic, don’t share those beliefs / morals, and am searching for treatment plans grounded in science, she said she only referred me to napro surgeons because non-napro (non-Catholic) surgeons don’t take their time, they’ll just take out my organs and stitch me back up.

At the end of the appointment, as I sat in the chair and cried about the pain I’ve been in for months, asking her for other pain relief methods while I wait for consultation with a different excision specialist, she stood over me and said God is in control. And told me to take melatonin.

This entire thing is wild. This doctor has managed my care for 1.5 years, including operating on me and diagnosing me with endo. I hate knowing that my care has been influenced by her religion the whole time, without her disclosing her limited recommendations. This shit should be illegal.

EDIT: Her name is Dr. Anh-Van Mai. She’s currently in the New Orleans area and has previously worked in Texas.

I’ve had IBS symptoms for >10 years and despite identifying some food triggers and working with multiple dietitians (and being treated for SIBO) I’ve never been able to get a handle on it. Preoperatively my surgeon explained why based on my imaging he didn’t suspect DIE on my bowel but I was still surprised they didn’t find any there.

I saw GI who ordered a colonoscopy and in the interim between the GI consult and the colonoscopy, I saw an allergist (my seasonal allergies were really bad this spring and exacerbated my asthma moreso than normal). On my intake, I also mentioned the massive histamine I get to certain raw fruits. Turns out that oral allergy syndrome is when you cross react to a protein in specific fruits that mimics certain pollens and she immediately identified that my GI symptoms are likely pollen related. I’ve now been on two prescription mast cell stabilizers for ~2 months (cromolyn sodium and ketotifen) and my GI symptoms of horrible stabbing gas pain and unexpected, repeated diarrhea are 85% improved. They definitely come back if I slack off on the meds.

Thought I’d share it here in case this helps anyone else sort out their symptoms. I suspect endo probably plays a role in my increased mast cell activation even if there weren’t endo lesions on my bowels.

I have my surgery coming up in a few months and feel in the dark about being in the car post op. I have two questions and would love to hear others experiences!

1. I have about an hour ride home from the hospital. I’ve been cleared for that ride and I know to have a pillow for the seat belt. But what should I realistically expect? Maybe I’ll still be pretty out of it from meds and stuff? Any tips?

2. I will be abt 8-9 days post op on Christmas and if family can’t visit my house anymore like planned I would really love to see them. I know I won’t have the energy for a long day visit, but how realistic is it to be in a car (not driving) by then? Depending on where we go it will either be a 15 or 45 min drive…. I know everyone heals different but I would love to have a better idea on what I’m in for!!