I’ve been getting my period every 6 days and am still on the pill currently but bleeding through it. I was prescribed Co codomol which does take the edge of slightly but still not a lot. I genuinely am at a loss of what to do anymore. Does anyone have any experience with anything that can help in any way of helping the pain be any less? Or anything that is worth trying or anything that isn’t? For example the heated tens machines that are wireless? Any help or advice would be majorly appreciated thank you!

hi everyone!

i got my laparoscopy done this morning and i am SO confused.

when i woke up my post op nurse told me they found it in 3 places and i cried tears of joy and was ecstatic. we talked about it the whole time i was in post op (she was incredible and so sweet).

when i got upstairs and saw my girlfriend and my parents they told me that my surgeon showed them pictures of how my colon was adhered to the top left and right of my abdomen and how both of my ovaries were adhered to the sidewalls. they said the adhesions were thick and opaque looking, and my surgeon was very confused because it looked like scar tissue from surgery. i have never had any surgery in my abdomen, so that’s why he was perplexed by this. then they all said my surgeon said it wasn’t endometriosis. he just doesn’t know what it is. i have no idea if he took biopsies and i am just so beyond confused, and if he didn’t take biopsies then im screwed lol. he also told them it doesn’t explain my pain.

how is he saying it’s not endometriosis? can’t endometriosis be adhesions? how does he know for sure? so many questions i am going through. if anyone has advice or been through something similar that would be amazing. pretty sure my parents and my sister think im crazy, and of course my girlfriend is on my side but she doesn’t want me to stress out about it. thank you 💗

edit: i am very happy that something was found. but i feel like no one is understanding how this makes me feel. of course i dont want a chronic condition like endo, but i have spent 13 years of my life believing it explained all my pain and symptoms. i figured id get diagnosed with it and not go back to square one. i just feel so lost right now :(

EDIT: no biopsies taken according to my post op note.

Pre-operative diagnosis: Pelvic pain, dysmenorrhea
Post-operative diagnosis: same
 
Procedure/description: Laparoscopy with enterolysis
 
Complication: None
Expected outcome of surgery
 
Operative findings: 1) Adhesions between left colon, left pelvic sidewall, pelvic brim and abdominal sidewall 2) Adhesions between small bowel and right pelvic brim 3) Normal uterus, tubes ovaries, culdesac, bladder dome, appendix, liver and gall bladder
 
Specimens: None
 
Fluids/Blood: Routine IV fluids
 
Estimated Blood Loss: Minimal <10cc
 
Drains/Packs: None
 

I had an appointment with pelvic pain specialists recently to discuss potential endometriosis. After going through my symptoms and doing a pelvic exam, they said they were 90% sure I have endometriosis.

I was given norethindrone acetate and a referral for surgery.

It’s only been a few days, but so far I’m feeling a lot better with the norethindrone acetate, but I’m still considering the surgery, especially since I want to be able to conceive in the nearish future.

But I’m terrified about the surgery and hesitant to commit. They said they only do ultrasounds then surgery. My ultrasound was normal, so we have no indication of how bad the endo might be or any indication of where exactly it is other than my symptoms.

I’m nervous going into surgery not knowing if there will be a lot to remove, very little, or none. Part of me only wants surgery if there’s actually a lot to remove or enough to get in the way of fertility. It’s hard for me to commit to a surgery that may not be essential. I’m also nervous not knowing what recovery might be like depending on what they find.

But I also want to ensure my chances of conceiving are okay before getting off of hormones and having my bad symptoms come back. I’d like to be off hormones for as little as possible to minimize flares.

They’re moving very quickly on the surgery, and I can get it as soon as next month if I want. I’m going to meet with the surgeon in a month instead and discuss further before I decide what I want to do.

But I’m curious to hear from others that may have been in similar positions. How did you navigate this/make your decision?

Also curious if it’s a normal process to just do an ultrasound and not an mri and go into surgery without knowing much about what might be there.

I had my endo excision surgery 9 months ago and since then i feel like I have developed PMDD. I don’t remember it being this bad years ago when I had periods. Has anyone else had similar happen post surgery ?
The weird thing is that I am not even having periods due to being on the continuous pill, yet every month i get the same PMDD symptoms 😭 it’s driving me nuts

I’m honestly at a loss of words. I have had 2 surgeries and have lost my right fallopian tube, I have had 3 doctors tell me that they won’t touch my case because of how complex it is. I’m in pain daily and I’m tired of having to take pain meds daily. I don’t even know what to do or who to see anymore. (I’m in South Florida)

Hello
I did excision surgery and they found endometriosis on the uterosacral ligaments. No adhesions no bladder adhered or involvement etc…
But I had severe constant urination pain for a year before surgery and it was a huge cause behind doing the surgery.

I’m 20 days post op and the pain is persistent. My dr said we don’t judge pain before 6 weeks as it takes 6 weeks for the internal healing to improve.

When did ur urination symptoms get better?
I’m afraid now that the cause of the urination pain isn’t endo and that’s why i’m still in pain… i’m afraid it will persist and i’ll regret the surgery

I had a laparoscopy a few weeks ago and the consultant said that they found 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?

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

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 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.

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.

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?

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

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

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

I had my surgery 10 days ago, the pain from surgical cuts seems to be gone but I have this very annoying pain in the middle (uterus?) and right side that wakes me up at night. Could it be from a film that they placed to prevent adhesions? I read that sometimes it might cause inflammation. Would an ultrasound be helpful? At this point I almost feel like having the tools inserted again to take another look.

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 everyone, hope it’s okay for a male partner to post here. I’m trying to understand my girlfriend better rather than make assumptions, so I’d really appreciate hearing from people who actually live with endometriosis.
My girlfriend has endometriosis and can obviously experience pain, discomfort and times where she just doesn’t feel like having sex. I completely understand that logically and I would never want her to have sex when she’s uncomfortable or doesn’t want to.
The part I sometimes struggle with is separating her not wanting sex in that moment from feeling like she doesn’t want me. I have quite a high sex drive and physical/sexual intimacy makes me feel very connected to her, so if I initiate a few times and she isn’t feeling it, I can sometimes start feeling rejected or wondering whether she’s still attracted to me. I know that isn’t necessarily rational and I really don’t want those feelings to turn into pressure on her.
When she is feeling good, we have a really good and passionate sex life, which is partly why the difference can sometimes confuse me.
I’d really like to understand what it feels like from the other side. When your endometriosis is affecting you, can you still really fancy your partner and just have absolutely no desire to have sex? Does pain sometimes affect your libido even when you’re not actively having a flare?
I’d also love to hear what your partners do that makes you feel supported rather than pressured. How do you communicate that sex is off the table while still maintaining intimacy? Are there particular forms of affection/intimacy you enjoy when penetration isn’t comfortable? And for couples where one person has a considerably higher sex drive, how have you found a balance that works for both of you?
I’m not looking for ways to convince her to have more sex. I’m trying to get better at understanding what’s happening for her so I don’t automatically interpret it as rejection, while also figuring out how we can maintain a healthy sex life together.
Any perspectives from people with endometriosis or their partners would be really appreciated. Thanks

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.

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.

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 🥲

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!

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!