After ICU-level hospitalizations, 3 surgeries related to endometriosis/adenomyosis, 20+ hospitalizations, my GP suddenly had enough of hearing about the pain I experience. He started mocking me, told me he wasn’t going to entertain my “cocktail of medicine” (which was prescribed by specialists) and when I asked about further investigation regarding rectal bleeding, he said:”We don’t need to investigate anything” and denied an endoscopy despite the ER report requiring one. It really hurts to feel like a waste of space after so much medical trauma. He won’t even see me when I try to make an appointment half the time.

Hi! I’m 28 years old.

A year ago, I was diagnosed with two endometriomas and endometriosis. Before that, I had no idea I had it.
Since then, my life has turned into hell. I was immediately told I needed laparoscopic surgery. I was so shocked that I spent two weeks lying in bed, crying and feeling depressed, convinced that my life was over. I had never had surgery before, so I was absolutely terrified.
After the surgery, the doctors told me I had severe stage 4 endometriosis. My case was very complicated, and the surgery was long and difficult. I was prescribed Visanne for six months.
I was horrified by the thought that I had been living with such a serious chronic disease for years without knowing it. I had no symptoms, no pain, nothing. I went to my gynecologist for routine checkups every year and thought I had my health under control, but it turned out that wasn’t the case.
Five months after the surgery, I developed pain in my side, and my doctors sent me for an MRI. When they saw the results, they were shocked. The MRI looked as if I had never even had surgery in the first place. There were so many endometriosis lesions and so much scar tissue and adhesions. And guess what? I was told I needed another surgery!!!

So now I’m facing my SECOND surgery in one year.

I’m so tired of going to appointments, getting tests done, and seeing doctors. I’m exhausted! I’ve spent the entire year going to hospitals as if it were my full-time job. I live in the suburbs, so getting to my appointments takes forever. I spend three hours on public transportation just to get to the doctor and another three hours getting back home.

I’m so tired!!!

My surgery was supposed to be yesterday, but my period started that very same day! I hadn’t had a period in over six months because I was taking Visanne, and of course, it had to show up on the exact day of my surgery! So the operation was postponed for a few days.

And then I was told that one of my endometriosis lesions is stuck to my bowel and that they might have to operate on my bowel during the surgery.

I’m absolutely terrified of that. I’m scared they might damage my bowel and that I’ll have to follow a strict diet for a long time afterward. I LOVE good food, and I love drinking alcohol. I HATE strict diets. I’m only 28 years old!

The worst part is that I HAVE NO SYMPTOMS! Nothing bothers me. Nothing hurts. But I still need surgery, and it makes me so angry.

And Halloween, my favorite holiday, is coming up soon! But if I end up having to follow a strict diet, I won’t be able to drink wine or eat pizza that day. The thought of that just makes this whole situation even more unbearable!

I’m so angry and upset. It feels like this endless cycle of doctors, hospitals, tests, and surgeries is never going to end.

Sorry for all the negativity. I just needed to get this off my chest.

I recently had an MRI that showed multiple large pelvic masses, including fibroids and suspected endometriomas. The largest are around 9–10 cm.

One minimally invasive surgeon (best in my area) told me I’m not a candidate for minimally invasive surgery because of the size and number of the masses and that I would need open abdominal surgery.

I’m wondering if anyone here has been in a similar situation. Were you initially told you needed open surgery but later found a surgeon who could perform laparoscopic or robotic surgery?

I just saw a tiktok of a girl who needed a cane due to endo and the comments were so ableist and rude. Do people understand that endo is not just a painful period, it’s a condition that causes lesions and adhesions on random parts of the body. That can lead to muscle spasms and pain in your legs which make you unable to walk properly, so a cane gets prescribed to help you. What broke my heart more was seeing comments from fellow women with endo saying she doesn’t need a cane. How can you have a terrible condition yet not understand or have zero empathy for others who have it???

Went to the gyno today and they say start with progestin only bc. Trying to be open minded but having an absolute shit week and day (had to put a beloved pet down on Tuesday and on the very worst day of my period rn) and I have to go back to work.

I'm pretty sure progestin only bc was what I took in college and my experience was awful - I lasted maybe 6 weeks on it. I'm hopeful that it'll be different this time, almost 20 years later and understand that the doctor has to start somewhere. But the thought of trying different bcs in the hopes that something helps while working full time and dealing with side effects sounds way too hard rn. I don't have the energy for that. I just want to feel better. At least with surgery you get medical leave lol.

I'm already coming into this with a bad attitude about women's health but can you blame me. Thought I had endo for years but never really got anywhere with docs about that. Then at 33, after having a copper IUD for 4 months, I got a positive pregnancy test. This was right around when roe v wade got overturned so care was dismal and like a month later I finally got emergency surgery and lo and behold they found an ectopic pregnancy and stage 4 endo. I know I probably need therapy too lol but right now I need to stop crying in my car and go back to work awful awful awful.

Just bleed through my pants too. This is some bs.

Any tough love or kind words. Thanks!!

Three months ago, I posted about a very successful gyno visit to start investigating endo. Yesterday, I had my surgery consult. Honestly? Floored. Reeling. Shook to my core by the competency of this (male) doctor.

We all know to expect a slog, to convince doctors to even consider we could have endo, all those fun battles. Nope! The doctor said I likely have endo before I even had the chance to say much. As my gynecologist told me, he's very into explaining things, so the appointment was this amazing crash course in what my symptoms probably mean, what my options are, even down to walking me through what recovery looks like after surgery (including separate explanations for whether the surgery will require a chest tube). I had no questions, even the niche things I came in with, because he hit every single point on his own. I've had reason to suspect diaphragm involvement, which has the potential to explain some of my general diaphragm and breathing issues (separate from POTS). My research led me to believe this is rare, so I also expected some convincing here, but as soon as he heard right flank pain he was all over that. I was also nervous because my symptoms disappear for months at a time, then flare for months at a time, so I thought they would be suspicious of that (even though it's normal), or that my current resurgence of pinched-nerve-related back pain may cause delays to "rule other stuff out," but they didn't bat an eye.

They did have to do a pelvic exam, so I was psyching myself up to ask for a medical chaperone since I don't generally tend to let men get involved in my vaginal health. However, when they left for me to change, they said they'd be back with a chaperone, no asking necessary. The exam itself was SO validating. I know I have pain, I'm hypermobile and probably have hEDS, so I expected pelvic floor instability too. They did the thing where you push your knee out to see if the pain gets worse and boy did it! Having that added step to the exam made me realize there's more pain than I was aware of and, though I didn't doubt myself, that this is real.

The other thing that delighted me was that no one in this process has cared that I'm not worried about getting pregnant because I don't think my body needs to carry a baby. He noted that was in my chart, explained that he's had POTS patients with endo who experience enough relief that they eventually feel up to bearing children, but also immediately said something like, "but that's not relevant for you since it isn't a concern." Like, made sure I knew my options but had no opinions on me not wanting to get pregnant, zero sass or condescension in his voice. I was also worried there would be more hoops to go through before surgery, but that's next on the list! He gave me all the options I could try before surgery, too, but he fully understood why confirming whether or not it's endo is important for me as someone with multiple chronic conditions.

I was sent home with the typical appointment summary, only this packet included tons of PT recs with his top pick highlighted, general info on pelvic floor therapy and some additional resources to help me get started at home, and some information about the new meds prescribed. New meds!! I was diagnosed with POTS 5 years ago, immediately put on propranolol, but that's it. Nothing since. This doctor prescribed me a higher-dose NSAID since Advil is ineffective enough for my amount of pain that I don't really bother taking, though I could probably use it multiple times daily. He also prescribed something for when the bloating/gas episodes happen. Could never have expected help on top of help on top of a good appointment!

I also learned some neat things that contradicted what I had read about diaphragmatic endo. I was under the impression this is fairly rare and requires a completely different surgery since it's in the upper half of the abdomen. Obviously, this may depend on the hospital and their facilities, but now they actually just make the incisions closer to waist height so the tools they use can go both up towards the diaphragm and down into the pelvis. The only difference here is that I need a thoracic surgeon on standby in case there's more involvement than expected (and this is where the chest tube could come in)! He also told me that about 1 in 12 people with endo actually have spots on their diaphragm, they're just mostly asymptomatic for reasons they don't understand.

I don't usually like to give specific doctor names publicly since it exposes where I am, so I may end up deleting this part, but I can't keep such valuable resources to myself. Both doctors are north of Chicago with Endeavor/North Shore (and take BCBS Medicaid). The gyno I saw from my last post is Dr. Kathryn McCarthy and the surgeon I saw for my pain consult is Dr. Richard Cockrum. Both offices were easy to navigate and staffed by kind people. What's more, both doctors also have plenty of experience with POTS and EDS, as there is plenty of overlap. This makes such a difference when you have overlapping symptoms, but it was especially helpful when speaking with Dr. Cockrum since he's familiar with EDS-related pain and was able to refer me to a PT with tons of experience with both hEDS and pelvic floor instability (who sadly isn't in network with my Medicaid). I want to emphasize, too, that they are familiar with these conditions. A big concern for me when I saw Dr. McCarthy was that my symptoms would be dismissed as probably being related to POTS, but she immediately clocked that something was off, even on top of nervous system dysfunction. I just can't comprehend the level of care and validation I've gotten from these doctors, and I am so grateful to be spared the tumultuous experience most other endo patients go through before being diagnosed.

This journey started last summer for me, and I didn't get insurance until this summer. I may not have answers yet, but I can't believe I'm already preparing to schedule surgery three months after my first gynecology appointment! I really hope me sharing this can give someone else a ray of hope, but I especially hope that my doctor recommendations will help someone get the care they deserve :)

So I just another rant my fatigue is like horrendous. Has anyone had this with Endo and has anyone have like normal ultrasounds but gone into surgery and finding it has anyone done pelvic congestion, doctors and what are their thoughts on that what has helped has not helped thank you so much for responding.

Not entirely sure if this kind of post is allowed, so apologies to the mods if it isn't.

Hello all,
My girlfriend had surgery about two-three months ago & had a Mirena put in. However she has a few other conditions that have made her recovery absolutely brutal & will probably have to go back in to get the Mirena removed, but that's not what this post is about.

None of her pain relief has been working (and she's tried pretty much everything) & she's in excruciating pain on a daily basis, so isn't really able to leave the house & has to spend most of the day laying down. She also has low iron & chronic fatigue issues, which make it difficult to be standing/walking around for extended periods of time. She's said to me on multiple occasions that she's having a really hard time mentally, since she feels so incapable of doing anything & she wishes we could go out on outings & dates like before her surgery. We've tried a few times to go out for dinner or to a sporting event together & she always says she's fine & tries to push through, but I've seen how exhausting & uncomfortable it is for her, and I feel so horrible & guilty about what she's putting herself through just so we can spend time together.

I'm doing absolutely whatever I can to try and take her mind off of it & give her little things to look forward to, but most of the time it seems to consist of sitting & watching her comfort shows (we've been watching The Rookie together). I absolutely love doing this with her & she's got me hooked on the show, but I'm trying to come up with things we can do at home to mix it up a little bit. She absolutely loves arts & crafts (which I'm hopeless at but would love to do with her anyway) & baking, whereas I'm more of a board/card games & puzzles type of person. We both love doing each other's interests, but it's so hard for her to focus on a board game or a puzzle when she's in so much pain.

Does anyone here have any ideas on little dates we could do at home?

For the first time i feel my heart aches, i feel bad for myself, i feel i let myself down. Ive been healthy all of my life how did i get endometriosis and adeno at once?

My whole future has kids around it. I dont know what did i do wrong. I dont.

It hurts. I don’t know what to do. I dont have a partner. How will i find a partner? Should i tell him i have these ? I am really llst

i live in cleveland ohio and am searching for a endo specialist. i have a dr that i do really like but she doesnt deal with just endo and my appointments were always very in and out and quick. i did like my surgeon, but again just feels not super personal or in depth. i also have pcos and they dont have a ton of info for how im supposed to deal with both and how to help my symptoms other than birth control. i have my second surgery last january and it went well but i am starting to have worse pain like i did prior to my surgery (i am not on any birth control so i expected this honestly). i am 27 and would like to hopefully have kids in the future 5 or so years and want to be as prepared as i can and make sure everything is okay. any suggestions for specialists near by? doesn’t have to be in ohio either, just relatively near!

Hello! I have an appointment coming up with a Dr. Natasha Mehandru who is with Kaiser.

I’m wondering if anyone has seen her or had any surgeries done by her or any info in general.

This is my first time seeing a specialist after my obgyn is pretty certain I have endometriosis.

Don't know if this is suitable to post here but anywho, for the past two years I've had red flags of endo. My mom had it and likely my great grandmother as well. I was at the ER today for a suspected flare. I'm home now after a clear CT scan and an urgent order and referral to see a gynecologist. The issue is its the day after my period and I'm having rectal bleeding. Tmi but when using the bathroom I felt unusual stomach pressure and twitching and then mild nausea and lightheadedness. I've had severe tailbone pain all day, stomach is tender, can't bend down, just being in my car going over bumps made my discomfort worse...but I'm not bloated, at least not severely. Trying to eat dinner now and just with a few bites my stomach is growling and I'm a bit nauseous. It seems I'm feeling worse now that I ate as being at the ER since morning I had no food. Is it just anxiety? Should I go back? I've taken 4 ibuprofen also but it seems its doing no good.

Hey guys!

So I’ve been struggling with my period since the first day I had it.
I turned 12 when it started (yes right on my birthday thanks..) and it’s only gotten worse since then.
I had bad cramps like so bad that it felt like being stabbed with a knife, a lot of bleeding & clots.
I used to throw up at school, pass out and wouldn’t be able to walk for the first day.
I would only get through it with pain medication and heating pads.
Sometimes it got so worse that I would loose all the color in my face before passing out and then when I came back I would throw up and then get better really quick but only for like 1 hour.

I haven’t been diagnosed with endometrioses or something else but I’ve seen 2 doctors for this.
The first one made an ultrasound but couldn’t see anything and the second one started me on the pill.

I didn’t necessarily wanted to take it since it’s just against the symptoms and it’s not really doing anything anymore (been on it for 1,5 yrs now) but I didn’t have time for further test at that time so I just did it.
(I was just graduating I just couldn’t miss any day of school for appointments or stuff like that)

I’ve been on the pill for like 1,5 yrs now and since then the pain has slowly been coming back.
I take the pill everyday so I shouldn’t get on my period but Iam right now and I have been before since I’m on the pill.

For 3 times.
Now 4 times.
And it’s hell.

The first time it lasted for 16 days and the last few of them felt like I was dying.
I lost so much blood and was so tired and couldn’t do anything about it.
My doctor said that it happens and that the pill isn’t supposed to be taken everyday and that you usually pause for a week for your period but in some cases you don’t want a period to avoid pain so he told me to do it anyways because mine was so painful (Wich I knew of course)

I’ve been having cramps and pain even when I’m not on my period and I’m just fed up.
I just want to know what it is.
I’m 20 now and I’m scared that if I never get it checked
it will affect my life later on.
You hear story’s about organs fusing together and women who loose their fertility due to endo and I just want to know as fast as possible now.

No doctor has ever told me to get it checke they just gave me the pill or told me that just my period and they can’t find anything because they aren’t specialists.

I’m honestly fed up.
I feel exhausted everyday, I just want clarity.

Thanks for reading my rent haha

I take 10mg of norethindrone acetate daily (3rd month), previously took combo pill but periods were so heavy and I bled for a month straight. With this high dose it is supposed to stop my period which it has for about two months but now I have horrible leg pain, cramping, sometimes I am not bleeding at all but then I am the next moment. Especially after a bowl movement! Has anyone experienced that? Is it normal?

I have horrible night sweats and wake up feeling sick and mental is down the drain, I am sad everyday but I had one good day when my period started. Is this something that others experienced? My doctor said the medicine could be causing it.

My primary suggested a hysterectomy as the next option, I am 24 and I don’t think I will ever have kids anyways so I’m okay with it but emotional over it too. I got diagnosed in 2022, tried an IUD but it moved and flipped upside down so doctors said hysterectomy is next.

After I got my diagnosis of endo, I started taking visanne/ dianogest and everything changed. My libido got lower, and I didn’t really wanted to have sex with my boyfriend. Oh, when we did had sex, it was painful and we had to stop (which was weird because some years ago, when we first started dating, I remember that it wasn’t painful? I don’t know what changed)

After I finished taking visanne, I changed to a vaginal ring (ginoring) and my libido got a little bit more normal.
But anyway, I’m still not super exited about having penetrative sex and I don’t understand why. My endometriosis is not that bad, and having sex does not usually hurt anymore, but sometimes it does… so I guess that uncertainty is what makes me nervous about it and I prefer not to do it.

I have an amazing partner and he always makes me feel safe, and he’s okay with not having the most active sexual life. Although we do… (tw: I’ll be more specific about what we do in bed) and we usually just masturbate together or to one another lol,

And wanted to see if someone does something similar or in general what you do with this aspect of your life :)

hi guys. To preface, I also have pots and hEDS, so movement is already kinda hard for me. I’m just worried about the surgery and it being even harder to walk from my stomach pain. I know it’s not usually recommended, but has anyone used a rollator after their lap? Has it helped? I’ve been wanting to get one anyway but my parents think I don’t need it 😐

Everyone so just kind of around so I saw an incredible specialist today. She wants me to see A. specialist for possible pelvic congestion syndrome before we do surgery because one can overlap other and I can definitely have both. I do have symptoms of Endo, but she said if I have like since I do have chronic fatigue and if patients have pots or MCAS there healing time is going to be very unpleasant because they're already dealing with underline condition.

So I'm gonna make an appointment for after Thanksgiving and get a work up for that and then she's happy to do the surgery but she wants me to go see them first just to make sure I don't have that condition since it can overlap with Endo but again you can have both and she wants me to just a treat that stuff first in case they do have it so all in all always a good appointment I mean I'm not going into surgery tomorrow. I was never going to, but I think it's good to look at that and to possibly do physical therapy and whatever else I think it's gonna help and then maybe surgery in the winter or maybe the spring if I need it.

Thank you for listening

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.

Hey folks! I've been dealing with pelvic pain for a while now, and suspected endo. I was supposed to have surgery a couple of years back, but found out just in time that the doctor was not skilled in endo. This past week, I've started experiencing new pain. These sharp, jolt like feelings in my urethra (different than just lightning crotch). A lot of bloating and discomfort in my pelvic region. Ruled out any bacterial or UTI stuff. Doc thinks it's endo that could be spreading towards the bladder. The "jolts" have been getting a little better, still bloating and discomfort though. Just curious, anyone here ever experience something like this? The jolts would come in waves like every 30 seconds to a minute and didn't correlate with urination at all. Wondering if this is a shared experience for some! I have an MRI coming up soon so hopefully more answers to follow! TIA everyone <3

Hi! I’m new to this community. I suspected I had endo for at least a year and a half and just yesterday I got diagnosed thanks to a flare up.
I have ADHD and generalized anxiety disorder and sometimes I get migraines too, so I like having a small pouch on me in case I need anything. I’m that girl that’s always got what you need: always carry meds to be prepared just in case I get pain or diarrhea hahah, toilet paper, soap (I live in Mexico so there’s not always that in public restrooms), antibacterial gel or alcohol, etc.
I’ve been looking around but I can only found recommendations of what to take in your bag to surgery. So I wanted to ask you all…
Besides self-heating self-adhesive patches and ibuprofen, what are other things you think I should add to carry around?
Non-pouch endo must haves / endo essentials (like to have at home) are welcome too!
Thanks in advance! 💓

Hi everyone, looking for some advice from others on the same pill!

I was prescribed dienogest for suspected deep endometriosis. My worst symptoms before weren’t actually painful periods, but rather painful ovulation, terrible PMS, intense fatigue and abnormal bloating. My periods were mostly manageable, with the occasional painful one.

In general, I’d say I’ve been handling dienogest well. I still got my usual period every month, but they were much more comfortable, with very little bleeding. I’d also get occasional spotting.

Now, in my third month, my period came quite late so i thought i will skip it this month, but no. The cramps were incredibly painful from the start, with heavier bleeding than I expected on dienogest. It’s day two, and I’ve had to take ibuprofen multiple times throughout the day. I’m bedbound and incredibly weak.

Also a week before the period started i would get intense knife-stabbing pain through my abdomen and ovaries.

Has this happened to anyone else on dienogest? I expected the 3rd month for my symptoms to settle and bleeding to stop or lessen. Thank you in advance!

Does anyone else continue to have high platelet count post (total) hysterectomy? Note that endo was not removed in the surgery. I had the surgery due to stage 4 adenomyosis.
I am curious to know if this might be relevant to endo still being present?!

The first two days on my period are so rough I can barely keep my eyes open. Sometimes this happens the day before as well. The pain, and irritability is one thing, having zero motivation to the point it’s causing issues at work and my day to day life is another. It’s like I almost can barely function bc I’m so tired. What do I do? What can I take? It never used to be this bad.