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.

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!

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?

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

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 💛🎗️

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 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

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.

I posted the other day and didn’t get much engagement but I went through old posts about endo coming back after these surgeries and I just want to say they helped me a lot.

I’m getting ready to schedule my 4th and I’ve been back and forth gaslighting myself about my pain. I hate there’s so many of us who go back under time and time again, but reading them reminds me that my pain isn’t nothing and I know my body.

I suffered for 24 years before I got any diagnosis and the grief that I felt 5 years ago is all bubbling back up. I’m thankful I have a wonderful husband and supportive mom (who also had endo) and friends who listen to me.

Thanks if you’ve ever shared your stories because years later they’re still helping someone.

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.

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.

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.

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 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? ❤️

Hey everyone, I just need to vent for a second because I am losing my mind over this.

I’ve been super upfront about having endo since day one at my job, and I even have FMLA set up (which is about to expire, ugh). Every month I deal with brutal flare-ups, but I really try to handle it responsibly, I swap shifts or give them away instead of just calling out unless I literally have to.

Lately though, I actually want to step up and do more around the store, but every time I try, management hits me with the exact same thing: "It’s so you don’t feel like you have to force yourself or feel bad that you can’t come”.

At first I let it slide, but it’s becoming such a annoying pattern. It’s my body, I know my own limits better than anyone. It feels so patronizing and like they're actively using my medical stuff to box me out of doing more. I know I don't have to prove anything, but it’s so frustrating. Has anyone else dealt with this?

My doctor suspects endo but i’m not convinced. I’ll try to keep the summary brief and add any extra at the end:

20 y/o F, on combined contraceptive pill since 14. I’ve been having bleeding now for a year. Almost constantly
November to December I bled 7 out of 8 weeks.
From January- April this year I was bleeding 3/4 weeks of each month, some month all the way through. Excruciating 10/10 pain. Stopped briefly from may-July.
Now August- October it’s been the same again but less pain (apart from after 8pm??)

Essentially, wondering if this is due to the pill and being on it for so long? Nov ‘25- April ‘26 the pain was unbearable.. but now isn’t so I can’t believe it’s endo?
Been 27 weeks since gynae referral.. still nothing yet
I have diagnosed cardiac issues, genetically confirmed Ehlers-Danlos (not hEDS), I’ve had acne since age 7, very oily skin. Just confused as to why this has all happened with the constant bleeding.
Any thoughts would be much appreciated as I am STRUGGLING and confused 🫶

My lap is next week and I’m not going to cancel but I’m having the common fear of them not finding everything. Has anyone been diagnosed with these symptoms? I feel mine is mild

-pain only on period off my period I feel fine just light cramping here and there during ovulation

-painful intercourse

-bloating randomly (it’s gotten better over the years but I have episodes here and there)

-heavy bleeding (saturating a tampon in an hour) along with nickel to quarter sized clots

-I take Advil starting a day before my cycle and then taking 600-800 mg around the clock for the first 3 days. If I forget I lay in the fetal position and rock until it goes away

-nausea and shaky legs sometimes from cramps. I haven’t thrown up or passed out but I’ve come close

-constipated off period but diarrhea on period

-intense butthole lightening when on period sometimes when I sit on the toilet and try to poop i literally get such intense cramping in my but I have to clench and do deep slow breathing until it passes

-heaviness in my pelvis on my period

-low back pain on and around period

While I know everyone presents differently and I do have a high pain tolerance but I’ve missed school, work and social gathering a because of my period and bled through a lot when I was in school. Thank you 🩷

Hi pals. I'm in an awkward situation right now in my journey and I'm not too sure what I should do. For some background, after over a decade of suffering, I was finally diagnosed via lap back in 2020. I was very lucky that pathology came back positive for endo because quite frankly I didn't have the best experience with this provider. She did excise a few areas but even on the day of surgery, she wasn't convinced she found anything. Turns out she did and I do in fact have endometriosis. In my follow up appointment, she also told me she discovered both of my tubes were at least partially blocked with one likely being fully blocked with either more endo or fibroids. She couldn't really do much with them and told me it was an insurance thing. She explained my now high risk of ectopic pregnancy. However, 10 mins later went on a rant about how if I try to get pregnant and have back to back pregnancies, I could be relieved of my symptoms for like 2 years. Big ole red flag. She retired shortly after and I never saw her again. I heard about another surgeon in Seattle, Dr. Brooke Winner and established care with her ARNP with the intention of being close to Dr. Winner in the event I wanted another surgery. Welp, Brooke left Swedish shortly after. She was MIA for a while and ended up starting her own practice that is not contracted with insurance. I felt okayish for a couple years post-2020 lap but in 2023 I was feeling really bad again. Debilitating inflammation and pain to the point where I had trouble getting out of bed most days. I pushed through and contemplated pursuing another surgery but was still a bit resentful from the 1st experience. Instead I had made the most wild decision to not only start running, but train for a marathon with my husband. I ended up running 2 full and 2 half marathons in 2025. I trained for a 3rd full but I ended up not running it due to a mandatory work trip. This whole journey was insane. I did it to prove myself that this disease will not stop me from doing what I want to do. And, I do think the exercise helped mitigate symptoms a bit. I felt BETTER, but still not NORMAL. The reality was that this training was incredibly hard for me both mentally and physically. I always had a really tough time training in my luteal phase and almost gave up multiple times. But then it would pass and I'd feel like superwoman again for a week and a half. I just did this over and over again month after month for like 2 years straight. Maybe I'm a glutton for pain, idk. I'm stubborn. Anyways, after my last training cycle I was like alright I really think I need to give my body a break. I have stayed active since but I do find myself slipping back into skipping workouts and runs because I'm tired, inflamed, and in pain. I recently decided it was time to look into a new surgeon in the area. I'm running out of options to use insurance but landed on Dr. Rohan Hattiangadi in Kirkland. Unfortunately, his office told me I needed a referral to see him so I switched my basic OBGYN provider to someone in his office. There was a crazy backlog in general and they just gave me whatever MD had the earliest availability...still 4 months out. This is where I'm conflicted. 4 months later, I finally had my appt with the OBGYN in his office and was not getting good vibes fron her. The way she talked about endometriosis made me feel like she wasn't well enough versed on the disease. She scheduled me for a TVUS and basically told me if nothing shows, she could also schedule an MRI. But if it doesn't show on either scan, my endo is "microscopic" and should be treated with contraceptives instead of surgery. I pushed back on this a bit and she went on a tangent about the mystery of endo and even made a weird comment about how "even she could have it floating around but her body absorbs it" or something insane. I was already completely frazzled in this appt due to hitting bad traffic on the way there and being late. So it was hard for me to use my words, but I just don't have a good feeling about this. I don't want to waste my time, energy, mental health going through this knowing it's probably not going to show up on these scans. The literature, even the ACOG recognizes it more often than not doesn't show. I am a clinical informaticist and everything that drives my work is evidence based medicine. I've read SO much literature on this disease in my own time and even based a few projects in my masters degree on the topic. But in the moment at this damn appointment listening to her babble what I felt was nonsense, I froze. I've been thinking about it nonstop since. My thought now is that I can do two things. I can get the ultrasound and see what that outcome may be. If it's present on scans then I can get that referral to Dr. Hattiangadi, who is in network and I can use insurance with. If nothing shows I can take myself to Dr. Winner and start the process of getting the right care off insurance and out of pocket. OR, I can cancel these appointments and just start the process with Dr. Winner knowing I am going to be paying out of pocket. I'm not made of money, I have student loans and other things going on. I was really hoping for an in network solution with someone knowledgeable on all the nuances of endo. But, this is just seeming more and more unlikely. I have a solution right in front of me, but I'm truly afraid of the financial burden. I do have some equity from my old house from my previous marriage in a savings account that is supposed to be for a future house down payment plus whatever I have in my HSA. I feel like my path is likely going to lead to this option regardless. I don't know if it's worth going through all this. My husband supports me either way and has even offered selling his classic car to get me the right care. He does think I should give the scans a chance but I'm just not convinced. I just don't know what to do. I'm almost 35. I don't have children. I'm old and I'm tired and I just want some relief. What would y'all do?

But am honestly too afraid they won’t find it and my “clinical diagnosis” was wrong. I have a meeting with my specialist soon - I don’t want more BC I want surgery