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.

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!

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.

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 💛🎗️

He’s been my rock, my everything, taking me to appointments, telling me I’ll get better doing all the things running a household requires while working PT. Tells me he won’t leave me, will see me through the end, no matter what it looks like he won’t give up on us … to this. Informs me he needs to take care of himself and cant do it with me like this. I’m not who I was - the trauma abd devastation of unnecessary surgical menopause, with severe nerve damage, vascular pain, disfigured by lymphedema (a* Gyn removed lymph nodes and this Md is recommended here!) no family support, lost independence, career, all joy, isolated and butchered beyond comprehension. I’m devastated.

Ladies - please choose your surgeon very carefully. Talk to other women who had surgery with them. Interview them multiple times before surgery. Read entire consent form AND ask them what informed consent means to them. Read consult notes told make sure what’s recorded is the truth . Observe not just what they say, how it’s said and if you’re spoken to with respect, kindness and patience. If they are arrogant - pass. Dont have time to answer email - pass. Push unnecessary pricedures - pass. Dont want to order imaging for surgical planning - pass. Listen to your intuition.

We only get 1 life and it only takes 1 surgery to permanently disable you.

I had my lap 3 days ago and the shoulder pain is thankfully the only thing super bothering me, but it’s also been making it very hard for me to sleep no matter what position or if I’m laying down or sitting up or whatever and half the time if I inhale too much it feels like someone’s driving a stick
through my shoulder. I’ve pretty much been using heat to keep the pain at bay since the meds don’t help it and I don’t know what else to do so if you have literally any ideas it’d be appreciated, I’m so tired but I cannot fall asleep bc of it

I always had severe pelvic pain especially during menstruation. Periods have always been irregular for me since I first got them.

Everyone said that my problem would be solved once I get "married".

I got married in Dec 2024, but my pain got worse. Menses are the same like before. Sometimes I bleed a lot and in the next month I just have to wait and wait for my periods. The pain never goes away whether it's periods or not.

I finally visited a gynac last week without informing my family. I finally took the decision......my doc is doubting I may be having endometriosis. It's yet to be confirmed.....I am scheduled for a laproscopic examination next week. Till then I have to wait. I don't know what to do. I am just being restless. Someone who has been through a similar situation please suggest something.

Thankyou.

😔😔😔

Seeking advice on some questions to ask an end surgeon prior to deciding on surgery or if they’re the right surgeon. Long story short, I have had a couple of appointments with a complex pelvic surgeon specialising in endo removal and pelvic oncology. She’s in the private sector and seems to have great experience from top hospitals and uni in the country, overall great on paper. She diagnosed me pretty quickly purely based on symptoms and a physical exam (one of my symptoms is painful sex) during which she stimulated the side pelvic muscles with her finger to see how sensitive they are - it was bad. We trialed Slynda for 6 months, however I’ve had horrible side effects and the pain and bowel symptoms did not go away. She also sent me to a dietitian and physiology specialising in endo related issues - didn’t make much of a difference. In the next appointment she prescribed me a different pill to try, alongside an anti-inflammatory drug, but also said that at this stage she would recommend surgery to properly diagnose and remove endo, of course I don’t HAVE to do it but because the pain persists its an option. She mentioned as post operative care they can insert an IUD while im still under after the surgery. Throughout the whole diagnosing journey she hasn’t ordered any scans (I know it often does not show up on scans), and it makes me feel a bit uneasy that the diagnosis came so easily without much “hands on” checking. I worry (as most on here) that if I agree to surgery, there’s a potential that nothing will be found. I voiced this concern to her, to which she said it is very rare that there is completely nothing there. She also said that her patients have a 85% improvement in symptoms within a year post op, and 15% don’t feel much change, but there isn’t a lot of patients that experience a worsening of symptoms which I am also worried about.

Overall, I believe she’s a good surgeon, but I wonder if anyone else was diagnosed so quickly by a specialist? I have the same overlapping symptoms of adenomyosis, why didn’t she mention this potentially? Please share your thoughts and any questions you asked your surgeon or wish you had asked them. Thank you!!

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.

hi guys, I’m fighting right now to get my first lap. I’ve been in pain for years and the last few months I have been in such severe pain, I feel like my life has been taken from me. I’m terrified. if you’d like to share, I’d love to hear your positive moments and success stories with endo. I’d love to hear it gets better.

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! 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?

I was meant to have my laparoscopy on the 22nd of October, but unfortunately it’s been postponed until the 19th of November. The new date is also the anniversary of my Pop’s passing, and I was really close to him, so I have a lot of mixed feelings about the whole situation.
Something else that’s been confusing me is that, up until this past month, I was experiencing daily, intense pelvic pain. However, recently it hasn’t been as severe. I’m still experiencing some pulling and pushing sensations in my pelvis, but the intensity has definitely decreased compared to what it was a month ago.

Now I’m starting to second-guess myself and worry that maybe the pain was just caused by my pelvic floor muscles rather than endometriosis. I haven’t been doing any stretching or exercises to help my pelvic floor because they hurt too much.
I know endo pain can fluctuate, but I’m struggling not to question everything now that the pain has eased a little. Part of me is wondering whether my body has just adjusted to the pain, or whether something else is going on.

Has anyone else experienced a period where their pelvic pain suddenly became less intense in the lead-up to surgery? Did your pain fluctuate like this even with endometriosis, or did you also have pelvic floor dysfunction contributing to your symptoms?

I know everyone's experience is different, but I'd really appreciate hearing from anyone who's been through something similar.

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?

———
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!

hi everyone, i’m a 20F with diagnosed endometriosis and suspected adenomyosis. endo was suspected since i was 13. i’ve been with my partner for over 2 years. kids, marriage and all that is coming in the next few years and we’ve been talking about it. I’m stage 1 endo, leaning towards stage 2. i’m really worried I’ll get to stage 4 and will struggle to get pregnant. i’ve always wanted to be a mother and he really wants to be a father, he always says to me that he doesn’t care if we have kids or not and he loves me no matter what happens but i can’t help but feel broken that the chance of having kids could be robbed from me. i’ve gotten pregnant twice and miscarried both times pretty early. what im getting at is, people with endo that worried about fertility, did you have kids young? how did you find that? having kids young? i know everyone’s endo is different but id really love to hear other people’s experiences. i’m not ready to have kids right this moment but i would be in the next couple of years but im really really scared of being infertile, hence why im considering having kids around 22 or so. i’m so sorry to all of us that have this disease, it’s truly unfair and heartbreaking. please share any experience, anything is helpful. thank you all🤍🤍

edit: my endo was found in my left uterer, both uterosacral ligaments, my left ovary was attached to my sigamoid bowel but they managed to separate it and i’ve got new endo kinda starting to grow around the place. they did an excision about 3 weeks ago on me and i’ve had my third mirena iud put in.

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

TLDR version: right hip is worse than before surgery; left hip now has significant nerve pain; ovarian cysts keep showing up on my hip MRIs but disappear on ultrasounds. found a new obgyn (this time a specialist) who thinks I have endometriosis. Lap scheduled. The hip pain is unbearable and I need to know if there’s a connection bc I’m tired of the endless appointments, injections, and scans.

Background: I’m one yr post op from having a right hip arthroscopy to fix an FAI and reconstruct my labrum. After about 9 months of “healing” (I’m using quotation marks bc I felt like it was always still sore) the pain came back in July with a vengeance and is now worse than before surgery. The past yr I’ve also had severe nerve-like sciatica pain in the left hip. Had a left hip MRI and it showed a possible cyst protruding from my ovary, which made me think that my heavy periods, IBS, and hip pain could be connected, as my mother had a total hysterectomy around my age (36) due to endo. The MRI also showed a small labral tear but my surgeon said my nerve pain didn’t line up with that and referred me to a spine dr (who said my back looked fine) and a neurologist (which I’m on a waitlist for) and also told me to see my obgyn for an ultrasound about the cyst. Long story short after being dismissed by my obgyn (“your ultrasound looked normal”) I sought out a specialist and after weeks of waiting he is convinced that I have endometriosis and I’m scheduled to have a lap next month. I’m desperate for answers because I’ve dealt with unexplained symptoms for years (even had a colonoscopy, which showed nothing) but they have always been manageable, albeit annoying. However the hip pain (which is felt in my thighs and glutes and worsens before menstruation) is downright unbearable and I went from being a marathon runner to someone who can barely walk a mile.

As for my right hip (the post op one) I got a new MRI (the is time with contrast) wks after the left MRI and the findings are the hip is fine but there is a 6cm ovarian cyst that of course was not there at my ultrasound appt. The pain in that one is more joint related that gets worse during deep flexion (putting on my socks hurts). Anyways if you’re still reading this I’d love to hear your thoughts because I’m desperate for answers and also terrified that none of this is connected.

I know some people mention they have vomiting with their Endo and I'd like to hear more about that. . I have been out of work almost 2 years now, due to getting constipated and vomiting on a cycle, that cannot be controlled. Once it starts I'm sick and unable to eat or drink for days. Throwing up for days. Many times I end up in the ER due to severe dehydration and vitamin deficiency. They almost always treat me poorly and do the bare minimum. I'm working towards surgery. What are everyones experiences with the GI upset and vomiting aspect. Did you have surgery and did it help these symptoms? I am worried about surgery, but I feel like it's the only way to fix this constipation and vomiting. I have done many elimination diets and I'm gluten free. It has destroyed my life. Thank you.

2 days post opp and tried senna and suppositories but so far pooped nothing but a little bit of blood!
How long did it take for you to poo post op? I suffer from chronic constipation so so scared it’s going to take days. I was given morphine twice in the hospital

I have recently (in the last 2 years) started suffering extremely badly with my periods. Roughly a week of dull cramps on the lead up, ovulation pain, vomitting, frequent bathroom visits, and debilitating pain for at least the first day.

I brought this to my doctor and he suggested go on the pill, I had already tried Naproxen and worked great then stopped working in September.

Anyway I took the pill at the start of the week for the first time, Cerazette. While I have been suffering from leg pain for a few weeks it has really ramped it up, I don’t know if it could be connected to my cramps. I also have stopped bleeding but have been having awful cramps all week, which I normally don’t suffer from after day 2/3 of my period.

I have a huge event next week and I won’t be able to attend if I’m in the amount of leg and back pain I’m currently in. I don’t know if I should stop taking the Cerazette and the Ponstan. I also am not even sure if these are symptoms of endo (im not diagnosed but it has been suggested as a possibility in recent months so I’m on the waitlist for a gynaecologist).

I don’t want to be dramatic, I know people have it so much worse than me but I’m just so frustrated that the pill isn’t helping. Maybe I just need to stick it out but any advice would be really appreciated 🙏

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.