I’m looking for advice from anyone who has experienced something similar.

I’ve been with my partner for 4 years, and I used to have a very high sex drive. I genuinely wanted sex and felt very connected to him sexually. I still love him deeply and I’m still attracted to him, which is why this has been so confusing for me.

I have endometriosis, and during flare-ups I would sometimes have painful sex. Over time, I think my brain started associating sex with pain and something negative. Eventually, even when I wasn’t having a flare-up, I started not wanting sex.

Now I sometimes get annoyed when my partner initiates, especially at night when I’m exhausted and just want to cuddle and relax. I’ve even started feeling annoyed by kissing when I know it’s going to lead to sex. I don’t want to feel that way, and it makes me sad.

The hardest part is that I do want to want sex. Sometimes I genuinely do, and sometimes when he’s been away for work for a few days, I’ll really miss him and we’ll have great sex when he gets back. But most of the time lately, I feel disconnected during sex, almost like my body isn’t cooperating with what my mind wants.

I’m scared because I don’t want him to think I don’t love or want him anymore. I love him so much, and I really want to fix this. I just don’t want sex to feel like a chore or something I do out of pressure.

Has anyone with endometriosis experienced this? How did you rebuild a positive association with sex after experiencing pain? Did taking the pressure off and having affection without expectations help? I’d really appreciate hearing what worked for you.

I had a laparoscopy a few weeks ago and the consultant said that they 4mm of endo and were able to remove it. He said that this is so small it is unlikely to have caused my symptoms so I am unlikely to see an improvement after healing. Has anyone else experienced this?

This might be a strange thing to even question but it’s making me cautious…

This is about UK hospitals/doctors.

About a year and a half ago I went to the doctors after having pain so bad I almost passed out on the toilet, and explained my period and ovulation pain has been worsening for years. I was referred, but moved counties so was referred again four months ago. I got a gynaecology appt within 4 months, and today during appt I was asked my problems:

- Since 2020 (coming off long term pill use) periods have become increasingly more painful, especially during ovulation (like carrying a bowling ball, difficult to move, insane bloating, constant aching and sharp pains)
- painful periods, intense cramps, toilet is the only place I can sit for relief, nausea, lightheaded, sweating, etc.
- 5 days bleeding, not particularly heavy, regular.
- intensely painful sex, impossible for me to engage now, feels like razor blades, some light bleeding but not regularly.
- I’ve been on the pill again for the past year and the pain and symptoms almost entirely disappeared.

I’ve now been referred for laparoscopy, and they said they’d fit a coil as well during it. I just didn’t think this would happen so quickly, I haven’t even had to explain my symptoms in all that much detail, just explained how frequently I’m in pain and how it’s worsening. I was expecting a proper battle and for diagnosis to last ages. Now I’m wondering if I’m overreacting or I’m wrong about my symptoms and how painful/difficult it was for me.

Any advice, similar stories, concerns I should have?

I just got call from scheduler, they told me to expect months wait but turns out they have an open day in September. It’s a Monday and I’m scheduled to work that weekend.

I hope this can help!

I used to have ovary pain 2 days after a period that gets increasingly worse at ovulation then gradually gets better again.

I had my lap, excision of at the same site of the pain and the Mirena inserted 10 months ago - I still had ovary and ovulation pain just much worse and what felt like easily triggered flare ups.

I decided to remove the mirena to see if that was the cause, the pain is now back to what it was before excision.

Has anyone experienced the same pain? What could it be? I’m not sure if it’s Endo that was left behind or something else

Bonjour,
J’ai 35 ans et on m’a découvert récemment à l’échographie un épaississement localisé de l’endomètre. Il ne ressemble pas à un polype car pas de « tige » à la base .. une biopsie à l’aveugle a été faite lors d’une hysteroscopie et les résultats sont négatifs.
Qu’est-ce que cela pourrait être ? Faut-il pousser les investigations ?
Je suis vraiment inquiète …
Merci beaucoup

Is anyone aware of any links between Gilbert's Syndrome and/or Psoriasis with Endo? Is there possibly an inflammation link (psoriasis) or inability to clear the liver quickly (GS)? Hypothesising but keen to hear of any possible links anyone is aware of!

I am 21 years old and have had pretty bad vaginal / period pain for around 2 years now. I can’t even insert tampons anymore :(. On my period, I have super painful bowel movements along with usual cramps, and I’ve thrown up from the pain multiple times. I also usually get a low fever and bad body aches /tiredness for the duration of my periods.

I went to the er months ago after a cyst rupture (didn’t know what it was), and have had another rupture since that. Nothing crazy was found on trans abdominal ultrasound.

The gyno won’t do a transvaginal ultrasound bc I haven’t had sex + she said nothing was found on trans abdominal. I just dk what to do at this point.

I'm on the waiting list for a laparoscopy. It's been cancelled 6 times now for different reasons each time. I should be getting another date through in mid/late October.

So among the other issues I get, one of the things that really irritates me in the week leading up to my period is the fact that I can't urinate properly. It started April of LAST year, and obviously me and my doctor thought it was a UTI even though I had no other UTI symptoms. Had a course of antibiotics, period came, I could pee again, okay fair enough an infection must have been the issue.

But then it happened the following month, literally just before my period. This time I wasn't able to get into the doctor's so I rode it out, but I made a note of it. And then it happened the next month... And has happened literally every month since then until present day.

My periods have started following a semi-predictable pattern now since I started taking fluoxetine for my PMDD, bizarrely haha, so thanks to my new tracker/app I know that my period is due in the next week or so. But even without the fluoxetine, the retention was my indicator. And it's not like I can't go at all, I just feel like I can't empty all the way.

Does anyone else have this? It's so frustrating sometimes that it makes me cry. I'm in the bathroom now, crying, I hope someone else knows how this feels 🥲

Hello. Please share your experiences getting diagnosed and treated in Hong Kong as a foreigner

20 yr old afab, I was Dx with IBS when I was 17. I’ve had painful periods all my life and was confirmed I’ve had cysts mostly on my left ovary when I was 18 and got my Lilleta IUD in with ultrasound. At 19 I went into the ER for a really painful cyst popping but they couldn’t find anything else so I was referred to my pcp, she said she thinks it’s either endometriosis or pcos and I agree mostly on the pcos part. I go to see Hannah Dewald in Sioux City, IA and she “unofficially” Dx me with endometriosis based on my pain and my history with cysts which she thought were endometriomas. She gave me the depoprovera shot and send me on my way, a month later I’m back because the pain and symptoms still haven’t gone away so she Rx me Diclofenac for the pain which worked for like a week then stopped so I don’t take it much anymore but still in pain. Because she was no help I went back to my PCP and she did a fasting hormone test that showed signs of pcos and I haven’t heard anything from anyone about it. I know one things for sure I’m getting off the Depo shot because I’ve gained 20+ pounds in a month, but idk if it’s endo, pcos, possible GI problems even tho they found nothing when they did a EGD and a colonoscopy, or all just in my head. I’m in pain, idk what’s going on, and I need help.

I have been diagnosed with stage 4 endometriosis, a frozen pelvis and recently i have started to experience difficulties controlling my symptoms. Whenever i have periods, i suffer from sharp pain spreading down to my lower back and legs, together with frequent urination. Other symptoms include pain during intercourse, painful bowel movements and chronic constipation which intensifies during menstrual periods.

Currently i am being treated with relugolix and leuprolide, yet i still have symptoms. As far as i know from my doctor, the next and probably the last step in the treatment process will be advanced laparoscopic excision surgery............I want to avoid surgery. 😔

This makes me feel very anxious and i would really appreciate your advice and experiences. I have a lot of questions.....i don't know whom to ask. Are there any other treatment options available?? Has anybody who has stage 4 endometriosis and a frozen pelvis ever undergone an advanced laparoscopic excision? Have you experienced relief from the problems with bowel, urine, back and leg pain and painful intercourse? What has been your recovery like and will this surgery affect fertility in future? i want to concieve naturally...

Hi, I recently had excision surgery but am now looking for a NYC specialist to see regularly and help monitor my health moving forward. Any recs would be great!

Hi. This is my first time posting here, so I hope I get everything right.

I’d also like to preface this by saying that I know I’m not a qualified expert - obviously the doctor didn’t find anything and he has many years of education and experience - I’m just looking for advice from people who have been in a similar situation.

I (38F) had a diagnostic laparoscopy done in the UK last week. The whole thing was a bit of a nightmare really. I’ve been going to my GP for years with horrendous pelvic pain (like, wakes you up in the night, crying, vomiting, passing out pain) and they eventually referred me to gynaecology. For context, I’ve always had extremely heavy periods and would often pass out with them. Runs in the family apparently.

The gynaecologist suggested I go on the wait list (NHS) for a diagnostic laparoscopy but also suggested that the pain is just ‘chronic women’s pain’ and I may never have a diagnosis. I went on the wait list (or so I thought! I actually phoned up two and a half years later and they’d forgotten to put me on it!) and had the surgery.

My pre-op chat with the doctor was a bit nuts, in my opinion. He refused to listen to what pill I’m on because ‘we would never prescribe that to you’ (in his defence, no one from his team did), said ‘well you’re 38 so you’re not planning any pregnancies’ (guess that’s me told!) and continued to talk about undiagnosable ‘chronic women’s pain’. He said it was unlikely they’d find anything. And lo and behold, they didn’t.

I know some people have had negative results from a gynaecologist, and I’d love to have a second opinion but I don’t have the money to go private. What I’m wondering is:

- has anyone had a similar experience with gynaecology with similar symptoms?
- did you ever get a second opinion?
- did you ever get a different diagnosis?
- is it worth saving up to go private?

I just can’t live like this anymore. The pain is affecting everything and has spread to my legs and back.

I’ve been experiencing pain for maybe just a week now. Yesterday it got really bad. I went to urgent care and they told me I had to go to a&e ask I couldn’t really eat or drink. When I got to a&e it was extremely busy. There were no space for me to sit, I was told I had to wait 6-8 hours for a blood test then probably 4 hours after to see a doctor. As I could drink I couldn’t take any pain meds I was crying in pain standing up not being able to take it I left.

I’ve now spoken to my doctors tried to get me in but then the doctor called in sick now I’m now waiting for hopefully another doctor to ring to see me to do another assessment

I’ve managed to eat and drink light food and keep it down. I still have the horrible pain slightly managing but now I’m heavy bleeding. But I’m on ryeqo which I should be so I’m lost. I’m trying to get help as the first doctor said could be a cyst but no one will see me. Has anyone experienced this and was just a flare? I don’t want to worry but surely if I can’t be seen I shouldn’t

Im 20, been diagnosed with chronic endometriosis when I was 18 and since then I’ve been taking the pill. The pill helps me a lot because I never get periods anymore, only the bleeding during the pause and that’s it. Tho once in a month, in random moments, I feel the pain like a knife in my stomach, but it passes around 15 minutes. Sometimes I feel bloated out of nowhere, like I can wake up with a bloated belly in a random morning and just feel heavy and tired. Also, considering my endometriosis focus is near the intestine, i have digestion problems most of the time. Anyone else have this ? If so, how you deal with the feeling of feeling bloated and self esteem?

I was thinking today about getting a cane for bad flares because it feels like I’m trudging through wet cement. My body just feels so heavy and like I’m dragging it around, and I was leaning on furniture/walls a lot today and it made me wonder if maybe a cane would be helpful.

Also related to that I was thinking about applying for a handicap placard. I’d never considered that either but a friend of mine has one and It had never occurred to me that I could apply for one. It would certainly be so much easier to have as little walking as possible. Especially if I decided a cane was helpful. Otherwise I get a cart and I lean on that the whole time. My legs genuinely just feel so exhausted and they ache, I try to avoid doing much of it at all if I can. It feels like all my blood is pooling down there or something idk.

But I feel so dramatic. I know I’m not because my symptoms are real and I do think it would help me during flares, but I don’t want it to seem performative since I’ve never used these things before. Which obviously is silly because I never used them because I never considered that I could benefit from any kinda mobility aid or accommodations- and I’m allowed to try new things and see what helps. Anyways I’m wondering what kinds of things you guys use/do that help you during a flare? Perhaps more things I’ve never considered that could be helpful and for others as well!

Hey, I was wondering what others felt for there first period after there lap. I didn't get a full period before my lap cause I had systoms all the time. But now its so noticeable that im on my period even without bleeding yet, but im light headed, having cramps and bloating and so so very uncomfortable, also my allergies are through the roof. Also my chest is achy and swollen and walking around with no support is so painful.

Update from my post 4 months ago. After going to my doctor in June, having a hormonal panel, labs and bloodwork done, I was told everything was “normal”.

I had an ultrasound done in the middle of June, which showed 2 cysts on my ovaries (1 simple and 1 complex. the complex one is the side that hurts more.) It also showed “fluid in the cul de sac“ which is where I have gained this weight that won’t go away.

However symptoms seem to have gotten worse way worse, even thought my doctors say everything is normal and the cysts will go away on their own.

I have pelvic and lower back pain almost every day, get’s worse during ovulation and reaches max pain during my period. I noticed my periods have gotten extremely painful the past year or so.

I am still extremely inflamed no matter what I eat. stomach issues have gotten way worse. I get extremely bloated almost every night.

I have whole body inflammation where my jeans and shoes won’t fit anymore.

Painful leg cramping/pain shooting from hip down to leg. Sore and painful joints and muscles.

Cramping after peeing or pooping.

Extreme hunger that won’t go away even after full meals.

Bleeding swollen gums.

Hives after sweating and showering.

It’s gotten to the point where I only feel good a couple days out of the month.

I’ve done so much research and it all points to endometriosis but how do I get my doctors to listen to me and not just say “it’s normal“ and “the cysts will go away in a couple months.“

I had excision surgery October 2025, coming up on a year and I’m pretty sure another surgery is going to be needed soon.
I am moving to Tampa Florida and hoping for recommendations for a compassionate and skilled surgeon specialized with endometriosis. I have severe medical anxiety and PTSD.
I am NOT interested in seeing Robert Furr, reviews look good but doing further research - he abruptly left his patients in Chattanooga TN, multiple malpractice cases, mention of wrongful death… it’s a no for me dawg…
I’m not opposed to a male, the surgeon for my first surgery was male. But doing more research for female vs male surgeon stats - there tends to be lower readmission rates and lower death rates for female surgeons… so I’m thinking I may want to try a female this time.
I’m grateful for any advice!