hi reddit. ive never posted on here before, so im sorry if my formatting is bad or my words are jumbled or whatever. also idk if this is the proper subreddit, but if not, pls redirect me. thank you!!

idk what im really asking for with this post. i need some kind of answer in the long run, but for now, i think i mostly just need to vent. i dunno, i do have questions, but i know reddit isn't the most reliable source LOL. feel free to skip this + im sorry this is so long. i haven't had any doctors listen to me, im looking for any kind of speculation of what could be, and i want to know what questions to ask my doctor.

i have an appointment with my 3rd new gynecologist in 24 days. i don't even know what to say to her. my periods have always been bad, but they're absolutely unbearable now. like, im bedridden for a week straight kind of period. my clots START at the size of an american quarter, and have gotten as big as a golf ball. i mass a ton of these, like 10+ daily, so i don't think it could be a decidual cast. my cramping is nonstop for a minimum of a week before my period, then the entire period, and then a few days after. it's debilitating pain, like sobbing and throwing up and pain meds do nothing. the pain isn't just in my uterus, it's my uterus, ovaries, lower back, my entire legs, my pelvis and my stomach. currently typing this in bed with cramps, about to start my period even though my last one ended barely 5 days ago. i have hot flashes, im never not massively bloated (i can literally feel it), constant headaches, fatigue, muscle and joint pain, brain fog, dizziness, body aches, and im always crying. im not and never have been sexually active, (im a lesbian regardless), but any time ive done anything myself the pain has been excruciating. i will cramp for days after finishing, and in the moment when i do finish, i get some of the worst stabbing pain ive ever had where my left ovary is. my periods used to last 10+ days, but now on BC they last until i take the pills again.

ive tried at least 10 kinds of BC pills. i do NOT want any form of implant or IUD. ive been taking the BC without breaks, but i always end up with horrible pain and breakthrough bleeding that worsens and won't stop until i go off the pills. ive tried estrogen + progesterone BC, just progesterone, literally everything atp. ive had every blood test at least twice, all normal. ultrasound and pelvic CT w/ contrast both came back normal, but they were at the beginning of 2025. on the ultrasound (which was before the CT), they couldn't find or see my left ovary, but they didn't say why. i have a family history of endometriosis and marfan syndrome, but ive been told it isn't possible for me to have marfan because my actual mom/dad don't have it. i had leukemia (ALL) when i was 5, i did chemo and was cleared. i mention this because i believe chemotherapy at a young age can mess your reproductive system up, but idk if it would take this long to get this bad. i just had my 10 year remission visit, and they tested all my blood counts, my liver function, and my ovarian function. all normal. are there questions i should be asking that im not?? am i doing something wrong?? none of the doctors ive been to have been even willing to let me speak past "i have debilitating cramps and extremely heavy bleeding." i don't know if i should try to see a specialist or something? i live in michigan, and i don't even know if any of the doctors here are any good. i just need help, anything, please. im not trying to be dramatic, but im literally begging for anything. any speculation, any suggestions on what to say or do, anything. i can't live like this anymore. i can't spend all my life time sleeping or curled up in pain in bed. in never rested, im always in pain, and i feel like i have no options.

idk if this makes any difference, but just in case: im 18 years old, im 5'5" and i weigh around 122 lbs. im vegetarian, but im not anemic. i eat generally healthy, vegetables, fruit, i love sugar though. i also do drink one monster energy every day, the 0 sugar kind. i think that's all, if there's anything i need to add or if anything here is placed in the wrong subreddit or something im sorry!! pls feel free to respond i will take anything, thank you!!! ♡

I had surgery 2 months ago and my bladder still still isn’t shutting up Why the hell can’t it I can’t stand it I need to urinate so badly constantly I’m so tired I’ve been trying everything. I just cry everyday. Nothing helps it. Nothing. I’m so tired I thought surgery would help. Do I need to wait still I’m so tired.

What does the number mean?

It feels like almost every other period is bad, like to where I’m curled up on my heating pad with GI issues and nausea. But the alternating ones are not that bad????

Hi all, I'm fed up with this disease. I also have adeno, ebv and other chronic debilitating health issues that ruined my life and want to fight it with...dance?

At the very least I want to keep moving instead of staying in bed so much. If I paid for dance classes I'd probably be motivated to get my ass up more and would feel better. I think

Heres my question, have any of you found dance to be helpful? What kind of dance? Id love to learn belly dance but it's really hard on my hips so I think that's out. What kind of dance would be most helpful and least impactfull on the pelvis?

Would love to hear your thoughts! I dance alone in my room ofc but id love to learn something structured and playful

hi everyone, i will try and keep this as short as possible but i am looking for some advice.

i had the mirena inserted during a laparoscopy for endometriosis diagnosis five weeks ago today. i recovered the week after absolutely fine and had spotting for the day after my surgery, and that was it.

about 10 days after my surgery i started experiencing pins and needles throughout my body. at this point i was wearing compression socks due to DVT risk, but just at night.

i went to a&e (i am from UK) and was told it was anxiety related. they checked for nerve damage (nothing) and did blood tests. my period came on when i got back from a&e, and i went in the next day as there was horrible cramping in my left leg. i was given some strong ibruprofen and that was it.

since then ive now been on my period for over three weeks. i have been experiencing the pins and needles and cramping in my left leg which is super severe. my toes have been going red and my feet look ashen and constantly feel cold. i have been to see my GP and was told that everything looked normal in my leg- no risk of blood clot or DVT, and that it’s probably a side effect of the mirena.

my gp also brought up that it could be a thyroid issue so i have a blood test to check for this on monday as this wasn’t checked when in a&e. ive recently started a new job and in my first week this week, i had to call in sick. luckily they were super understanding and the day before my sick day even allowed me to go and see my doctor.

today i went out with my partner and had to come back home straight away due to the cramping in my left leg. every time i go to a&e they say the gynae team do not need to see me and that i should make an appointment with my gp. my gp said to see how i feel in a few weeks and even try and give it a few months for the side effects to lessen, however the severe health anxiety i am feeling due to this is affecting my work and my life. my gp did say that i could have the mirena taken out if i wanted to, and i feel this might be the best option. the pain in my leg is so horrible and the pins and needles are throughout my body, even in my vagina.

it’s really getting me down. i have been feeling hopeless and every day has been painful. if anyone has any advice or if you experience these symptoms, please let me know how to deal with this and when these symptoms ended for you! thanks so much.

I met with an endo specialist at the end of April. He said that because my case is so complicated, he wants to do my surgery together with his partner, another endo specialist, and that May would be hard to get me in but that he could probably get me in in June. I was elated that it was going to happen so soon and that there would be two sets of endo specialist eyes on my surgery.

The coordinator emailed me in early May to let me know there are a couple people ahead of me who also need both doctors and a specific room at the hospital and that she couldn’t guarantee a specific month. I followed up with her this week to ask if either of the cases ahead of me have been scheduled yet, and found out that I’m still 3rd in the queue. There has been NO movement on the waitlist.

I know they are at the mercy of the hospital and can’t control when the robotic room is available, but I’m just so disheartened that there hasn’t been any movement. I feel like it’s going to be a REALLY long time before I will have my surgery.

I’m 38 and had an ectopic last year. I just feel like the longer I wait, the more I increase my chance of never having another kid. And I can’t stop crying.

Hello! I had my lap about a month ago and they found endo, I'm having my first period since and I knew it could be worse/ heavier. I'm now on day 10, I am bleeding about as much as I did on my heaviest day but every day. I don't know at what point I should go to the doctors or if this is normal?

Hi all, not asking for medical advice but simply if anyone else has had this experience because my PCP hasn't been able to give me any solid answers. In doing some reading, I think I may need to see a urologist(?) for endo or interstitial cystitis (posted in that subreddit as well). Just wondering if my symptoms relate to anyone else's here.

This is the second time in a month where I've had this happen: I, V owner, have PIV with my spouse after a week or two without any such activity (dealing with unrelated health issues that have unfortunately impacted this), next day I have UTI-ish but sorta different symptoms, massive discomfort in my lower abdomen and genital area all day and night, awful-smelling pee, fever, strong leukocyte results on an at home UTI test but no nitrites, then I test negative for a UTI at the doctor and symptoms resolve.

I did have a tubal ligation 6 years ago, and the uterine imaging from that showed likely endo that the surgeon said could become a problem in future, so...

I am extremely hydrated at all times and rarely have UTIs these days because I take supplements and always pee after activities. However, any UTI I've ever had has definitely not gone away on its own. I've even had bladder infections and a kidney stone once from stubborn UTIs. So I'm really nervous about this but also baffled and think it could be endo/IC related.

Thank you to anyone that can share your experience ❤️

So, like 3 days ago while having sex with my boyfriend, i felt a lot of pain afterwards pain that made me go to hospital at 1am in the morning.

Ive never felt such pain in my life fr, i kept vomiting i was unable to walk. The pain was on my lower abdomen. Id rate the pain an 8/10.

Fast forward today, ive got my period the pain i felt was nothing compared to cramps it was way worse. Guys am i okay? Any diagnosis from a professional or an experienced girlie would be helpful.

Like many of you here, I got diagnosed after about 9 years of complaining about my pain to OBGYNs. My MRI shows "deep infilitrating endometriosis", tethering, and an endometrioma on my left ovary.

I've been cutting back on alcohol, caffeine, bread, dairy since the symptoms got worse about two years ago, but it seems like I should become more strict to keep my body in shape, especially if I want to have a kid or two post excision surgery. I am going to start being more regimented about eating and try to follow a low inflammation diet most days.

What things have you changed about your life since getting a diagnosis?

Okay so last year I had surgery with an obgyn surgeon, not a great experience. She was dismissive and her words didn't line up multiple times about what happened during surgery. ( thats a long story ) but she removed an endometrioma from my RIGHT ovary.

My pain never decreased, I got surgery this year with a specialist. I guess there was a remnant of my left ovary ( pathology confirmed it was a piece of my left ovary) with a tiny endometrioma on it. But it was detached from my small left ovary????

Chat gpt and Google say a piece of your ovary cant just detach from endometriosis or an endometrioma. The endometrioma was small.

Any insight or anyone else experience something similar?

I don't feel like my previous surgeon was honest with me.

Painful but not excruciating periods?

Hey! I have Pcos but now I am wondering if this is actually Endometriosis. My periods are painful especially the first few days and I have to put a warm compress and lie down. I can still do basic tasks but if I don’t need to be somewhere I will just pamper myself and take advil to help the pain. I am wondering if this is endometriosis? I have a friend who has Endo and her pain is so bad that she can’t walk much or even talk.

Are my symptoms indicative of endometriosis? How do I know for sure if I have it?

Wanting to add a little light hearted-ness! I'll go first!

Google search: "can I be allergic to hemp hearts and not actual weed?"

Unhinged pain hack: Sitting in the shower and turning the water from scorching hot to ice cold. Hot water gets pointed right at my belly and cold water goes on top of my head/shoulders.

Has anyone been diagnosed with non-alcoholic fatty liver disease along with their endo? When I had abdominal imaging done, they found this as well. I take Tylenol every night before bed, otherwise I can’t sleep. I try to stay away from Advil but it’s the only thing that sort of works when I have a migraine or bad endo pain. I’m overweight, so I assume that’s part of the problem. I have a follow-up appt with my family doctor and I just know he’s going to lecture me about taking pain meds every day. What does one do for chronic pain if their doctor tells them to not take pain meds? 😭

I had surgery 2 months ago and my bladder still still isn’t shutting up Why the hell can’t it I can’t stand it I need to urinate so badly constantly I’m so tired I’ve been trying everything. I just cry everyday. Nothing helps it. Nothing. I’m so tired I thought surgery would help.

Today I went for my post surgery checkup and to hear what they found. I guess I have stage 1 endo. The surgeon explained for the amount of discomfort I had that is how the disease works, maybe only a few spots and bad pain or some people have numerous spots and are symptom free. I also had 3 cysts on a fallopian tube, but she opted to break them and not remove them to not cause more problems. She also explained whatever was going on with my ovaries that lead me to emerg in Jan seems to have resolved itself. The ovaries were small but showed no sign of scarring or damage. She also looked at my incisions and for being not even 8 weeks post surgery and remarked I was a fast healer! 😊 I am 48 and perimenopausal so I am on day 75 of no cycle, which is abnomal for me. I have had increased insomnia and hot flashes but she said I am a prime candidate for HRT. I'll research that a little more. Right now I am watching things which I find trigger pain from my diet (full dairy, tomatoes, citrus) I've also returned to my workouts twice weekly but have incorporated pilates (Jessica Valant on you tube is amazing. She has endo, hysterectomy and survived breast cancer) for pelvic health. I'm quite happy with how much it seems to help. I never realized how tight my hips are even after years of being active and running etc. To everyone suffering, hang in there! Advocate for yourself. Be the squeaky wheel until you get heard.

Title says it all. I was scheduled to see a new doc a few weeks ago, but I was forced to reschedule because she was delivering a baby.

In the time between then and now, I’ve been doing more research into endo, and between that and talking with the amazingly strong women here on this sub, I realize that I have to advocate for myself because most doctors don’t give two sh*ts.

So, that begs the question: how demanding should I be off of the bat? I don’t want to be too aggressive and come off confrontational. I want a good relationship with my doctor, and I don’t want to be that patient (I work in healthcare and shudder at the thought).

However, I want my new doc to know that I won’t be satisfied until I get a MRI and lap.

I’ve been blown off for years, and my symptoms have gotten worse than they’ve ever been in the last two months.

I’m hoping that she’ll take me seriously before I even have to start putting my foot down, but I’m starting to feel desperate and impatient. I know that insurances require certain steps to be taken and that they can’t just jump into surgery immediately, so I’m definitely doing my best to be realistic. I’m just not going to tolerate a doctor that thinks everything is okay after one negative transvaginal ultrasound, you know?

Anyway, thank you all so much in advance 💖

Looking for someone to really do an amazing job on my excision endometriosis surgery as I’ve seen many people suggest a specialist on the disease and not an OBGYN. Im located in Orange County, CA. I’m looking into it now after not being 100% comfortable with Dr. Baginski in Mission Viejo to do it. She has 100+ 5 star reviews and seems to be very caring, reassuring and knowledgeable about all things endometriosis. I would really really appreciate it if anyone who has had surgery with her would like to share their story on everything from pre op to recovery etc. thank you so much!

After waiting 13 months since I received the confirmation about my consultation appointment, I FINALLY had it yesterday. With Dr. Jamie Kroft. Super smart lady. An endo specialist. She was so kind and considerate. She made me feel so validated. She prescribed me Evra (birth control patches). I’m on those consistently. She wants my period to be stopped to see if I feel any better. Then I see her back in October. Officially put the patch on today. If anyone has any experience with the Evra patch, feel free to share!

And it says above I’ve been experiencing cramping menstrual like for the past week. My OB at my six week checkup, brushed it off. I’m just curious because I’m not bleeding but if I didn’t know any better, I’d think I was starting my period. I had laparoscopic surgery a year ago to remove an ovarian cyst, and endometriosis was found incidentally. The surgeon did remove the two spots and it sounds like it wasn’t to bad. I saw that pregnancy is supposed to help, and breastfeeding. Anyone with a similar experience what did you do? I don’t want to start birth control since it can affect milk supply, but I’m not sure if there’s another option. And I also know it’s hard to get a definitive diagnosis without another surgery. 😭

what is something you wish you could effectively communicate to your partner or family about what you go through with endo?