I had a bilateral salpingectomy done and this was the only picture they got of my uterus. Pathology report came back benign and they found a cyst in one of my fallopian tubes. No mention of whatever this is on my uterus though. It looks like possible endo scarring?

I recently had my lap (Yayyy) i got two pages of photos from it, but I wasn't told if they found endo or not. I know my doctor got a biopsy and that we will be going over it for my post op appointment. One of the pages has very clear photos of my uterus + ovaries along with what I think is some possible endometriosis lesions. I genuinely can't figure out what im looking at for my second page though (included) I know its best to be patient and just ask once my appointment comes around, but i figured there's no harm in asking if you guys know what yall see/what im even looking at.

My gynaecologist thinks that I have endometriosis, but she said that two symptoms do not match endometriosis, and that I must have something else too despite all scans coming back, clean, our severe constipation and weight loss symptoms of endometriosis?

I’ve done everything I’ve been recommended. I’ve been on all the hormonal meds continuously, I’ve found some holistic help I’ve continued with and I do regular physio. somehow this is still ruining my life. I just want to feel alert and be able to work. My bar is so low.

I know my limits, I know how to tackle a flare but I’m so fucking tired and this isn’t a life. i’m always just lying down. [warning ⚠️ discussion of painful sex] I’m married and in my mid-thirties, i can’t even think about sex (like mentally) because the start of physical arousal sets off real debilitating pain and actual muscle knots forming up my lower back. And if I somehow avoid that — pain after sex lasts for several weeks.

I've been working so hard… for more pain free stretches where I find myself too tired to actually get ahead on anything. I am fortunate to have a great therapist and great social support systems though.

so now, after alter years of work and advocacy and suffering, I had the lap.

The post op report indicates "nothing” major endo wise was found but my paranoid ass can see it. there are no big lesions or adhesions, I agree but… [warning ⚠️ two lap photos below from my surgery]

I haven’t had a post op breakdown with the specialist yet and I’m trying to just accept where I am right now and be patient but I’m so frustrated. I live in Canada and they’re not going to immediately open me back up (never mind excise things they didn’t see) soon and I feel like I‘ll be fighting this forever.

Why does if feel like it would be easier if I knew this would eventually kill me?

hi everyone, has anyone ever had two different radiologists give conflicting reports on the same MRI?
i was originally told my MRI was clear, but after obtaining my images i’ve found another report mentioning mild thickening of the uterosacral ligaments possibly due to deep infiltrating endometriosis (DIE), along with slight medialisation of my right ovary.
i’m now considering paying £200 for a specialist MRI review as i’m unsure which report to trust. has anyone experienced similar or had a private review that was worthwhile? ❤️

I have stage 4 endo and had a lap 3 years ago to remove from uterus, ovaries, appendix, bowels, and bladder, to remove my appendix and left ovary from my bowels and to drain cysts on my left ovary. I live in the UK so everything below refers to the NHS.

After surgery I had a severe reaction to progesterone. I couldn’t get an appointment to discuss the reaction and after multiple a&e visits decided to stop taking the meds. Because of this I was removed from the specialist for ‘refusing treatment’ (I found this out when I called again to try book an appointment, this was not communicated with me when it was done).

I’ve since been re-referred to a specialist and been under them for over a year however have never met or had an appointment with my doctor, although have tried many times. They schedule me in, and then cancel the appointment a couple weeks before and reschedule but it never actually happens.

I have had numerous symptoms over the last year including nerve problems, bowels and bladder working/ not working intermittently etc, but no medicine, doctors support, tests or treatment plans as I cannot get an appointment with the doctor.

3 months ago I had an ultrasound which showed evidence of a ruptured cyst. I was extremely unwell for a while but still couldn’t get an appointment with my specialist. At this point I did manage to see the registrar who said they would not do surgery unless I took the medicine, when I mentioned the reactions I had he said this was impossible and I need to speak to the specialist (who will not see me omds).

I had another ultrasound 2 days ago which showed a 5.5cm cyst on the same ovary. This wasn’t picked up in the last ultrasound. Still can’t get an appointment.

I’ve just come on my period today and it’s very abnormal, I’m barely bleeding and my left leg is very numb which could be general swelling/ inflammation or the cyst.

How do people get appointments with their specialist? A&E and the GP can’t do anything, and the specialist just will not see me. I’ve been told to go private multiple times but worried about the costs.

Any comments on how to get an appointment/ help, or experiences with the constant cycle of cysts/ cysts rupturing on the same ovary would be greatly appreciated.

I’m probably missing so much context so ask any q’s and I can try to answer.

Surgery today. They found nothing. I don’t have endometriosis and the cyst that was there last month was gone. They took out my tubes as planned and that’s it. I’m fucking devastated in a way because now it’s back to square one and I have no explanation the years worth of sometimes debilitating pain, the cramps and flu like symptoms before my period, the bloated stomach, the weird abdomen sensations like feeling there’s a hard inflated balloon moving around inside me, like a foreign object that shouldn’t be there. My surgeon told my husband that she and I are going to come up with a plan on how to proceed and get answers and she will not just leave me to my own devices but will help me figure out what’s going on. Though I guess my doctor did say it’s a good thing I don’t have endo, which yeah, true. It’s just frustrating and not the outcome I expected from the procedure.

In other news, I feel okay. The surgery lasted less than an hour and they didn’t have to use as much anesthesia so I’m having a better time coming off it than I normally would. I’ve been sleeping on and off throughout the day and my husband has been awesome taking care of me. Trying to see the positives!

Hi! So my surgery date was suddenly moved up to a little under two weeks from now due to an unexpected opening and I need some advice. I took the date without even thinking twice, and not that I AM thinking twice I’m extremely grateful to be in the position for potential relief sooner than my planned late December date. I’m just nervous!! I have autism and have a lot of fears about surgery in general after my initial diagnostic lap didn’t go great and my team wasn’t the kindest to me about my anxiety. So I’m looking for some tips for what made other people’s experiences smoother! And maybe some kind words from the community to ease my mildly terrified brain a little?

The pain is *just* about to start, I've taken painkillers preemptively but I know it won't help. Nothing helps. I can't keep calling in sick to work, and even if I do, I'll still have the pain. It's still a day where I'm demoted to the bed/sofa. I'm always productive, always on the move, always doing something. If I'm on my period, I kiss goodbye to all of that.

Ignoring the fact it's very important for the continuation of human life: the entire female reproductive system can gtfo, man.

I am experiencing reoccurring Hemorrhagic ascites due to endometriosis and have had to get paracentesis a few times, I wanted to know if anyone has had this experience before or is it just me

Did you all have to remove your earrings for your lap? I have 2 earrings that have been in for 10+ years, barbell type, and I even got a little tool on Amazon and I can't get them out. I know that I could go to a piercer, but I was just curious how important this rule was haha

That’s all! I’m recovering from laparoscopic surgery and they found all the endo, excised some of it, and I am sooo happy that they know I wasn’t being "dramatic" or "weak" when it comes to pain (or just "imagining it").

The doctors who didn’t believe me can shove it! Because it was THERE, all along it was in my body, and I wasn’t dramatizing my condition! I was really getting into a dark hole about ever being diagnosed (confirmed endo), and thought I’d just be considered "crazy" forever.

So while I’m still REALLY sore, I am happy that I have answers that I can throw in the face of any future and past doubters who have made living with this disease 10x worse. And going forward they can’t deny my pain or quality of life.

Since I got my first period at 10, my life has been shit. Periods pretty much ruined everything for me. Now I’m almost 17 and I had an appointment with a surgeon today, this surgeon has also done surgery on my mom who had endometriosis. I’ve been diagnosed with adenomyosis a year ago and I’m 99% sure I have endo as well. Since I got diagnosed with adenomyosis, I’ve been going back and forth between doctors and doing sm tests and trying so many different pills. I was so excited for this appt because I thought that I could finally get real help and maybe even get a laparoscopy too. But I guess she was running late and of course my mom was very busy too, she had to go back to work soon and we had to leave because the surgeon was running late and my mom didn’t have the time nor patience.

On the way home I couldn’t stop crying and my mom couldn’t stop yelling at me to stop crying. I’m still crying right now too because I’m so done with everything. My mom just told me that she is not letting me get surgery and said I could go to fucking physical therapy instead. Mind you I’ve been to physical therapy and they’ve told my mom I need to see a specialist for my problems but my mom just doesn’t listen.
Nobody fucking gets what I’m going through right now I’m so exhausted my life is ruined. I can’t hangout with friends anymore bc of my pain and I hate wearing tight outfits because of how swollen my stomach gets or how bloated I get. None of my friends understand what I’m going through. I wish I could be 18 already so my mom doesn’t have to control me anymore. I hate my life so much. I used to love reading and drawing but bc of my brainfog I can’t do shit except for rotting in bed. I hate endo and adeno, this whole thing is a fucking joke. I just want to be a normal teenage girl. I feel so helpless and depressed now

Hi there everyone. I’m 24 and have long suffered with what I believe to be endo and PCOS symptoms. Like many of you, I’ve been dismissed, not believed by many GPs. I was told to go on the pill which didn’t help at all, then I tried hormonal gel and that didn’t work. I had my first ultrasound privately which showed signs of PCOS on my right ovary.

I moved to London and my GP once dismissed my concerns, saying it was normal. I was in my early twenties by this point. I once had a period that lasted over a year (heavy bleeding, not spotting) and so many other symptoms. I also go without periods for months on end.

Through a therapist who actually went out of her way through the NHS to request a specialist appointment at the gynaecology specialist ward in London, Imperial. I had this appointment in April and the doctor I had, for once, listened. He said he initially believed I had endo and PCOS, we just needed to prove it. He really listened to me and understood my pain.

I had my MRI and this came back with no signs of endo, only PCOS, now on both ovaries. The MRI was done examining my womb. I only found this out through browsing the NHS app and was crushed.

I had my follow up appointment today with a doctor, different to the one I saw before. She dismissed my chances of endo, acknowledged the PCOS. I read out a list of 42 symptoms on my phone, from fatigue to vomitting to migraines, that I had experienced in the last few weeks. She put this down to a lack of excerise and didn’t even ask me in the appointment what I did for a living. She would have found out that I walk to and from work each day (3 miles) and work in the theatre industry. I’m not overweight and weigh just under 9 stone.

I pushed for a compromise, with the research I’ve done with endo and PCOS, and she agreed to put me on the contraceptive injection and if that doesn’t work, waiting list for laparoscopy.

I don’t know what to do anymore and where to turn. The previous doctor I saw in April gave me some medication to make me bleed, as he was worried about me developing cancer. I’ve only had one period this year. I didn’t start this as I was going through big life changes and didn’t want to make myself bleed. So now I have two conflicting opinions.

The appointment I had today was so belittling and crushing. It was like she didn’t want to believe me. I don’t understand how I could read all those symptoms off of my phone and she puts it down to lack of excerise. What do I do? Where do I turn? Please. I need some advice and if anyone could give it, that would be a big help.

TLDR: Ryeqo has helped my pain a lot, but after about 8 months I’ve started getting irregular breakthrough bleeding. I’ve also had very low libido and some morning nausea. Has anyone had the bleeding start this late, and did anything help settle it without stopping Ryeqo?

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Hi team!

I’ve been taking Ryeqo for about 8 months now and overall it has actually worked pretty well for me. My pain has reduced quite a lot — I’d say I’ve gone from regularly being at an 8–10/10 to more like a 4–5/10, so for me it has definitely been a worthwhile trade-off.

The biggest downside has been my libido. It has been basically non-existent for most of this year, which has been really frustrating and has definitely taken a toll on my relationship. Luckily my partner is amazing and very understanding, but it’s still something that has bothered me quite a bit.

More recently, though, over roughly the last two months I’ve started getting really irregular breakthrough bleeding. It’s not extremely heavy, but it’s definitely more than just a tiny bit of spotting — there’s enough blood to stain my underwear, and it’s often dark dark blood. (tmi sorry 😂) I’d been pretty settled on Ryeqo before that, so it’s annoying that it seems to have suddenly started after being on it for quite a while.

I’m interested to know whether anyone else has had breakthrough bleeding start after being on Ryeqo for several months? Did it eventually settle down again, or did you find anything that helped stop/manage it? I’m also interested in whether anyone spoke to their gynae about it and what they suggested.

I do get some nausea in the mornings as well, but otherwise Ryeqo has been pretty good for me, especially compared with the level of pain I was dealing with before. I’m just hoping there might be a way to get the bleeding under control without having to stop something that has otherwise helped me quite a lot.

Would love to hear other people’s experiences!

Thank you so much to everyone’s that’s been here with me throughout this long and dreadful journey💛 Yesterday I had my robotic surgery with my specialist after nothing was found in my first lap in June (performed by an OBGYN).

I have been laughed at, dismissed, and not believed by doctors for years - but just as I held onto dearly since the beginning of my journey, my specialist found Endometriosis and severe Adenomyosis as well as cysts, adhesions, and a blocked fallopian tube!!! The feeling is bittersweet but I can’t even begin to explain how much relief this has brought me to know that I was right to hold onto my truth and continue to advocate for myself even when it felt impossible. I currently feel like death recovering in bed haha but I hope this post is able to share a bit of hope with everyone in a similar position! I’ll know much more soon at my post-op and i’ll make sure to update 💛🎗️