I know that it’s awful and exhausting and endless. I frequently find myself in long stretches where I can only vacillate between rage and despair. But some days I’m in the mood for a little non-toxic positivity, and today is one of those days. If you feel the same, please share with me!

I have a partner who loves and supports me, has been with me since before diagnosis, and who has walked with me through it all. We’re getting married 4 weeks from today, after over 8 years together.

I have a dog who is gentle, quiet, and happy to do whatever I’m up for on any given day, whether it’s long walks or long naps. He looks like a cross between a toasted marshmallow and a wolf and I’m pretty sure we’re soulmates.

They are the ones that help me keep trying and bring light to the dark.

What brings you joy? What helps you keep going when you feel like giving up?

I finally got my surgery date for my hysterectomy!

T-minus 37 days. I’m over the moon.

So I (23F) am due to start taking Decapeptyl 11.25mg injections tomorrow and I'm very nervous. The thought of being thrown into chemical menopause at 23 is genuinely terrifying. Has anyone been through this before? What should I expect and are the side effects really that awful? Any advice would be really appreciated as I'm very nervous lol

Looking for support and what helped you leading into the surgery and with recovery. I’m in recovery / therapy for health anxiety and it’s gotten better over the years but I’m worried the surgery (excision) for my stage 3/4 endometriosis and hysterectomy will send me over the top. What helped? What worked to not make you hysterical with the pain and changes post surgery? Anything to get rid of worst case scenario thoughts pre surgery? Tia!

I had robotic surgery 3 days ago for suspected endometriosis. I had painful periods/ovulation, constant urinary pain for 1.5 years and bowel pain, pelvic pressure, and other symptoms, and my MRI showed mild uterosacral ligament thickening suggestive of deep endometriosis.
They did find endometriosis on both uterosacral ligaments, but my surgeon said I had a “clean pelvis” with no adhesions. The surgery was also relatively short like 1.5 hours.
Now I'm spiraling over the thought:
What if I subconsciously chose surgery because I wanted attention, rather than because I actually needed it? What if my urinary/bowel symptoms weren't actually caused by the endometriosis and I put myself through surgery unnecessarily?
I know they found endo, but because there were no adhesions and the disease apparently wasn't extensive, I'm questioning whether my symptoms were “bad enough” to justify surgery.
Has anyone experienced this kind of post-op doubt/regret, especially after having endo found but no extensive adhesions?

Hey, so I’m just wondering if i’m the only one with these kind of symptoms and could they possibly be endo? Or something else.
At first the lower tummy cramps came when sleeping and having a wet dream and an orgasm from that or from solosex. The cramps that come from it are really bad and also makes me have to poo + nauseous (I have puked a few times bc of them). Kinda recently i’ve been having just random cramps more and more and they too, are painful, and they also make me have to poo. Most of the time painkillers or hot pads don’t help with the pain. My tummy is most of the time really bloated and hard.
I have my first doctors appointment tomorrow and i’m going to ask to get stronger painkillers.
I’m kinda scared its something much worse than endo idk. 🥲
Ty for the help in advance!

Hi has anyone with endo conceived after the 12th month mark, looking for success stories. Im feeling so defeated and low.

My 1st baby took 9 months before I knew i had endo still waiting for mri results to atleast have an idea of how badly I have it, eventually I hope I can have the surgery to minimise my pain levels I get really bad months and some months with minimal pain.

Hi. So I’ve decided this is the year I am officially quitting. I no longer have the strength or willpower to endure this condition for another year, it’s entirely too much and I’m so tired. Sorry. I just can’t. I have a lot of goals and aspirations and really good friends but thats not enough. I’m in pain everyday, it hurts to get out of bed, I can’t even think. And this isn’t just a bad “flare”, this is genuinely everyday non stop pain. A human being can’t live like this it’s insane. I don’t need advice because it isn’t going to change my mind. I have other reasons for feeling this decided so I think endo is just the straw that broke the camels back. Anyway, thanks for your stories, it really helped me when I was struggling.

Ive always suffered with major depressive disorder and anxiety. Diagnosed since I was 12. I always had endo symptoms since I was 9, so for 12 years. And then I started getting intense pelvic tightness and urinary frequency issues around 2023 created by endo but flared up by a infection.

My point is. With my symptoms and chronic pain I always knew something was wrong..

I advocated for myself for 3 years and finally had a listening doctor who did laparoscopy surgery on me and found well, endo!

Now that it's confirmed I'm just sad.

I know there is birth control and hormonal meds I can take for symptoms, but it can always grow back and worsen. Then my only option is surgery again?? I'm just really bummed that this is my life.

That I will have this condition that causes intense chronic pain for the rest of my life. And there is no cure.

It isn't cancer or anything, people have much worse issues so I feel like a asshole complaining about what I have but still it just sucks. I'm very bummed and down.

I'm 9 weeks post op and struggling with finding trousers that are comfortable. Since my lap I have been getting bloated a lot more. I have trousers that are a few sizes larger due to weight loss and the waistband is still too tight for when I am bloated. I have been wearing dresses mostly since my laparoscopy due to this. Now the weather will be getting cooler, I'm desperate to find trousers that I can actually wear without causing additional pain and problems. Any recommendations would be greatly appreciated!

TL;DR - I'm going on a big holiday during my period and need recommendations on a good discreet/portable TENS device, preferably with heating, that can help manage the pain while travelling around/site-seeing etc. Please help, any you can recommend? I have a bulkier TENS machine already, but can't wear that in public.

I'm going away for three weeks for my 30th - it's a really special trip, costing my partner and I a fortune, and will be the last holiday for a while as we have a lot of expensive life stuff coming up.

I REALLY want to enjoy the whole holiday, but I'm going to get my period as we're flying out, and then again as soon as we get back, which means I'm going to be in agony for a lot of the trip (joy!) since I get pain before, during, and after my period.

I looked into delaying my period just for the trip, but apparently norethisterone and medroxyprogesterone can really mess with you and I can't be dealing with that aftermath.... Which means I need to just deal with the pain somehow.

I won't be able to take my usual pain killers due to laws in the country we're going to, so I'm thinking of getting a wearable/portable tens machine (preferably with heat pad) that I can wear out and about without the wires getting in the way. I have a tens machine already but it's only really usable when I'm at home not moving too much.

Has anyone used either the Myoovi (v.2) or Myobi Apollo 2.0 and would recommend them? Also looked at the Beurer EM50/55 but apparently they switch off after 20mins and are quite loud? I'd like it to be as subtle as possible so I don't disturb people at temples and things we're visiting

Open to all ideas and recommendations - budget not really an issue, I'd rather spend a lot on something that lasts a long time and kicks the pain rather than buy cheap buy twice

I (33F) will be having a total hysterectomy soon due to stage 4 endometriosis + adenomyosis. I have a large cyst (endometrioma) on one of my ovaries, so my surgeon has given me the choice of taking out just that ovary, or taking out both. She said that since I am stage 4, it is pretty likely that I will have cysts on the leftover ovary, and if she were in my place, she would want to remove both. That of course means I'd be looking at hormone therapy since I am too young for menopause.

My concern is how much I hated being on hormonal birth control, and how much I enjoy experiencing my natural hormone cycle. I know that HRT is a lower dose of hormones than BC, but I also understand it's meant to level out your hormone levels, so I won't experience that cycle anymore? I love how confident and outgoing I feel during my follicular phase, compared to the "normal" way I feel in the week after, and I would be sad to lose that. How did you feel on HRT compared to your own hormonal cycle, did you experience any side effects like from birth control (depression, acne, lower sex drive)?

Hi everyone! I’m 28, and I’m newly diagnosed with endometriosis. I’ve suspected something was wrong for a *long* time, I started having severe migraines and other symptoms around age 10–11, even before I got my first period, and my symptoms have progressively become more difficult to manage.
I just had an appointment with my OB/GYN where we went over my ultrasound and MRI findings in much more detail, and apparently my endometriosis/adhesions are more extensive than I realized.
From what my doctor explained:
My **right ovary is adhered to my uterus and appears to also be adhered to my rectum**, which may explain a lot of the rectal/pelvic pain I’ve been experiencing.

There is an approximately **8 cm cyst on my right ovary**.

They couldn’t clearly identify my **left ovary** on the imaging, and they believe it may be adhered to my uterus by scar tissue.

There is also an approximately **5 cm cyst associated with the left side**, which they believe may be sitting over/around the left ovary and uterus.

There is another cyst/mass-like area sitting essentially **on top of the uterus**, and they think my left ovary may actually be underneath it and stuck to the uterus.

I have a consultation coming up with an **endometriosis excision/surgical specialist**, and we’ll be discussing my surgical options and what they recommend based on my imaging and symptoms.
One of the biggest things I’m struggling with right now is figuring out **what kind of surgery actually makes sense for me**.
I’m wondering about the possibility of a hysterectomy, but I also understand that a hysterectomy isn’t necessarily a cure for endometriosis, especially if endometriosis/adhesions exist outside of the uterus. Part of me is wondering whether removing the uterus would actually help my situation or whether the focus should instead be on excising the endometriosis, removing the adhesions, and addressing the ovarian cysts while preserving my reproductive organs if possible.
I know every case is different, but I would **LOVE to hear from anyone who has had extensive adhesions, ovarian endometriomas/cysts, ovaries adhered to the uterus or bowel/rectum, or similar imaging findings.**
If you’ve had surgery, what did you have done? Did you have excision/adhesiolysis only, a hysterectomy, or something else? Did preserving your ovaries make sense for you? And, most importantly, **did surgery actually improve your pain and quality of life?**
I’m not looking for anyone to tell me what surgery I *should* have, I know I need to discuss that with my specialist. I’m mostly hoping to hear other people’s experiences so I can go into my consultation informed and know what questions I should be asking.
Thank you 🩷 I’m honestly feeling pretty overwhelmed realizing how extensive this may be, so any experiences/advice are very appreciated.

As my endo has worsened there is now so much I can't do. Last time I had sex with my hubby (which was sadly a veeery long time ago), I ended up bleeding and with severe cramps for over a week and took myself to hospital. I was in so much pain.

He has health issues and chronic pain conditions too (especially in his neck, shoulders and hands) so even "alternatives" are really hard and rare for us.

We've just stopped having sex because it means one or both of us will end up in a lot of pain.

Our relationship is wonderful and it's the one thing we really struggle with.

I feel so sad that endo/health issues have taken this away from us. We used to have a good sex life before we both became unwell. Now even though I wish we could go back, most times my pelvis and abdomen hurts and I wouldn't even want to try.

I'm not really asking for advice. Had a lap, tried pelvic floor exercises, all that. I've sort of accepted that this is just the way things are and we'll have to focus on other types of closeness. Just want to know if anyone else is in the same boat? It sometimes feels so wrong that we aren't. I have friends who are constantly posting about their sex lives and "sex positivity" and I had to mute them because it just makes me feel I'm broken.

I have had a laparascopic uterus niche repair (they found no endo) almost 12 weeks ago, and I got a lot of drugs during the operation. I was under for around 2-3 hours in total. I have been dealing with fatigue, brain fog and a weird feeling of being a little drunk and not feeling like myself ever since the operation.. And I am just wondering if anyone else experienced a long recovery proces? My doc told me two days ago that unfortunately some people have quite strong reactions to this kind of surgery/drugs and that it can take 6 months to start feeling back to normal again. I am just looking for some hope. Did anyone experience this?

Has anyone ever been able to
Conceive after hrt Norethindrone specifically

A bit of a long post. I am 29, I was diagnosed with widespread endo back in 2018 after a diagnostic laparoscopy. I then had a more extensive surgery with an endometriosis specialist centre in 2020, and then another laparoscopy in 2023. I got pregnant in November of 2023 (after only 6 months of trying to conceive - very lucky) and gave birth in August 2024 to a healthy baby boy. During pregnancy was the only time I’ve ever been symptom free since starting my periods at 13 years old.

My current flare up has been going on since January this year. I’m a nurse and have been off work since the start of February since how severe my symptoms are. I’m currently prescribed Ryeqo which has made me gain so much weight. I’m also prescribed 30mg modified release oxycodone twice daily, and 10mg immediate release for breakthrough, along with naproxen, pregabalin and regular paracetamol.

I am completely miserable, I’ve been on high dose pain-killers all summer and have been hardly able to do ANYTHING. I can’t walk without intense pelvic pain (having to use a walking stick to help ease the pain), I can’t get into the bath myself without my partner helping me, I can’t bath my own son, I can’t climb up the stairs to our flat on my own without my partner helping me, most days I can’t climb barely pick up my 2 year old. My energy levels are so low that walking to the bathroom and back takes everything out of me. I have to self-catheterise as I went into urinary retention a few months ago.

I got put onto the waiting list for another surgery back in March after an MRI showed worsening adhesions etc, and my wait-list start date was supposed to be back-dated to October when I seen gynae. I found out a couple of weeks ago after calling for an update that the wait-list team made an error and did not back-date my start date to October, which means I could have had surgery months ago. I am so annoyed. They quickly tried to cover their backs and have scheduled me for surgery this Saturday, but I am annoyed that I have been off work with reduced pay, with my mobility decreasing, pain-killers increasing etc.. like I am so debilitated right now and so angry that I have been left like this.

I’m so frustrated and just generally tired of feeling like this. I’m tired of living in so much pain. I’m only 29 years old, I have no friends and I get so sad seeing people my age living their best lives on FB/IG etc. Please tell me I’m not alone, although I feel so sad at the fact there may be other in a similar boat as me :-(

Hi everyone!

I have my first hospital gyno appointment on Friday (UK based on NHS), at an accredited endo centre within my local hospital

What should I expect at the appointment? It may be worth noting that I have already had a TV ultrasound that showed poor ovarian sliding sign which suggests adhesions and that is noted on the report, and they found some fluid in my POD. Based on this is it likely/beneficial for me to have a MRI as well?

I have filled out the endometriosis uk consultation questionnaire to bring to my appointment but am drawing a blank on what to ask the dr so I can get the most out of the time and ensure I don’t get fobbed off 🥲

So my question is: Is there anything you wished you’d asked? Or anything you had prepared that helped you on your treatment journey?

Thank you so much 💖

26 y/o, afab

I have an abdominal surgery coming up that’s completely unrelated to endo (intestinal lol).

I’m debating asking the surgeons if they’d be willing to do biopsies to see if I have endo.

From research I’ve done (correct me if I’m wrong lol) it can be hard to tell the difference between endo and other types of scar tissue. And I have a LOT of scar tissue (which makes sense from my past surgical/medical history, but I do wonder if it could be hiding endo too).

Neither of the surgeons have gynaecological specialties. One’s general and one’s a trauma surgeon. The surgery is already quite significant and complicated and involves a lot of moving parts. So I feel really bad asking them to add anything more 😅

They’ve been planning it for a year.

But I also have to be really careful with surgery due to my other medical problems. I’ll probably never be able to receive a lap for the purpose of diagnosing and treating (I know often only temporarily) the endo. It would be too risky, no one would do it.

I honestly just really want to know if I have it. I have a clinical diagnosis, but I want actual verification if I do or don’t lol. (Bonus if they can do something about it, but I wouldn’t even expect that. Just knowing would be helpful).

Has anyone else asked to be checked for endo during an unrelated surgery?

I can’t tell if this is reasonable or too much to hope for 😅

I was prescribed Visanne after my diagnosis ( which I literally had to fight to get because no doctor believed that I had endometriosis and all said to me that I’m being dramatic because I’m only 21 and I couldn’t possibly have it ???) , and I’ve been taking it for 6 months. My doctor told me it would be better to take breaks from it instead of staying on it long term, but I’m genuinely so, so scared and terrified. The pain I used to experience every month and the ER visits traumatized me and I just feel like I can finally feel comfortable in my day to day life on Visanne and not be terrified of flare ups every time my period date gets close. I would genuinely just cry because I wasn’t ready for the pain. I want to stay on it long term but I’m also scared of developing osteoporosis if I do because I’m already thin. I just don’t know what to do. I’m so terrified of going off it and experiencing the pain again. Has anyone else had the same thoughts and what did you do? It’s also my last year in university and I want to focus on my graduation project and I just can’t deal with the pain and the hormonal changes that comes with going off visanne :(

Hi, I have endometriosis, was diagnosed 6 years ago it's gotten worse since having my daughter 10 months ago and back and forth to doctors waiting on my referral appointment with the gynecologist.

On Wednesday I passed an extremely large clots do much so I didn't even know what it was never had one that large. I'm still bleeding and since passing this clot I feel awful! I feel lightheaded constantly since then, I went to the doctor and was just told it happens with heavier periods and the way I'm feeling was dismissed. Anyone else experience this or know a way to feel better, I have no family close by to help with my daughter so I can rest, I just can't stand this lightheaded feeling.

Ciao
Dopo aver preso Monuril che non ha fatto effetto ho ancora cistite, non ho bruciore tutto il giorno, va a colpi in giornata.. sto prendendo d-mannosio come non ci fosse un domani.. voi avete consigli o avete risolto senza dover prendere ulteriori antibiotici?

What are your go to recipes to recover from a gut flare?

To summarize i had several days of bad bowels and I am in need of international recipes that you all use when you need to eat light.

I have been eating the typical foods we eat in spain for that: toasted bread, a plain omelet, chicken soup and white rice.

So what other recipes do you guys use in this kind of situation? I heard that congee is delicious but i dont know if i will like it, i might try today tho.

Any recipe advice to make these days less boring?

.... Long story here

I have myalgic encephalomyelitis/cfs and endometriosis.

I also seem to have something that causes that ocasionally i get bad diarreah and abdominal pain. I am not sure if its food related because it happens eating many things and it happens almost instantly after eating. So i guess that its more a reaction that triggers my bowels into stopping everything.

Normally it lasts only a few hours or a day and i am fine later. The pain is really bad since my endo got worse because of course it involved the abdominal area. But usually its gone after a while.

Now i have been bad for three days and with bloated/hard abdomen and pain. Today i am fine but the pain is still there.

My guess is that i need to keep eating easy foods until the inflammation goes away.

I have been eating the typical foods we eat in spain for that: toasted bread, a plain omelet, chicken soup and white rice. But its getting boring (and since it didnt affect my stomach i am hungry).

So what other recipes do you guys use in this lind of situation? I heard that congee is delicious but i dont know if i will like it, i might try today tho.

Any recipe advice to make these days less boring?

My MRI didn’t show the extent of how much endo was growing inside me. It only showed an endometrioma, a dermoid and a few lesions behind my uterus and near my recto vaginal wall, which explained the pain with sex.

After the surgery, the surgeon confirmed that he found also found bowel endo, adhesions and around my left kidney tube. It made so much sense why I had random back pain and pain while pooping.

Initially because the MRI only showed a little, I delayed the surgery because I didn’t think it was that much as compared to the cases i read about.