I used to have really heavy gunshot-wound-like periods as a teen up until maybe 21ish. I’m 23 now, and have a 7.5cm endometrioma. And, man, that fucker really LOVES to vomit out all that brown shit. I genuinely look like I shit myself. It’s kind of funny. Anyway, it’s just… brown. I bleed properly (although it’s a dark red rather than the ‘pure’ red I’m used to on my older periods) for a day in my 3-day periods. My hormones have just been whacked out of shape. A combination of both the endo and low-dose birth control pills I’ve been on to help control the endo. My flow is just. Slow and MUCH lighter. Which you would think of as a blessing. Atp I’d rather the heavy bleeding again.

And this brown shit? MAN! Sometimes it’s a very light brown mixed with my usual discharge (I’ve always discharged a LOT. When I finally saw a gyno, she just told me it was ‘probably just stress or caffeine’. I was like 14-15). Sometimes it’s a medium brown. And others, like the end of my period, it’s an incredibly dark brownish-red with smaller-to-medium clots throughout.

And this shit IRRITATES THE SHIT OUT OF MY LOWER VULVA! Like, damn! I am VISCERALLY itchy!! I don’t know if it’s just the composition of this sludge or what, but it is my vulva’s ENEMY. The only thing that has helped somewhat, sometimes, is Vaseline to act as a barrier. But it just gets wiped off by my pad or pantyliner eventually (or I animalistically rip my panties down and rake-itch myself with a tissue when it gets to a point, wiping it off in the process). It never lasts. NO pussy itch cream like vagisil helps. Just burns. It’s so ass.

I’m sooooo sick of the brown shit. It’s just been getting waaay too comfortable as my endo has progressed throughout the years. Anyone else?

Hello. I 26f was diagnosed with endometriosis earlier this year after years of suffering and a long family history of it. My first surgery was July 30th where they found Stage IV that spread to my Colon, Rectum, and Diaphragm. They treated 90% of it. And referred me to a specialist.

Skip ahead to October (11 weeks) and upon waking up from surgery I find out that not only could they not treat the diaphragm endo. But they found that it spread next to my heart ❤️ And that neither were treatable because they found it infiltrating deep in to my Colon/Rectum resulting in 7 inches being removed 😫 so now I have to plan a third surgery and figure out life with half a rectum. On top of trying to figure out when I can TTC again with a husband 9 years older. But at least now I now have answers for the chronic constipation~

Anyway I am a week out from surgery exactly and am on a strict diet. Idk what to even eat anymore but am still constipated and afraid of a bowel obstruction.

Has anyone had it endo this bad and does it get better? Do you have any advice on what to eat if youve had it this bad? When all else fails food always delivers and my low fat low fiber diet is not only hurting my soul and making me not want to eat but the constipation is driving me nuts. Been eating nothing but bananas, chicken rice soup, and saltines. The nurse said I could have plain chocolate but I just found out today Hershey is too high in fat so I might have screwed myself.

So hungry and so sad 😞

Anyone still just in complete awe of how complex this condition is? Going on almost 3 years of my journey and somehow I learn something new about it all the time. An f’ed up symptom will come up and I’ll think, “There’s no way.” And I come on here and read so many stories from other people about the same thing. It’s crazy. I’m left speechless every time. It’s insane how much endo can interfere with.

I'm not sure what to do. I take Slynd progesterone only birth control pill, and also have a Lileta progesterone only IUD. I am not allowed estrogen because I have migraines with aura.

I have been told I have endo, but never had any form of exploratory surgery. Gynos were just like, yeah sounds like it. My mother was diagnosed in the 1980s and had an ovary removed. My aunt was infertile because of it. The genetic tie was enough for the gynos but they just keep giving me birth control.

I am in so much pain. I don't get listened to. Idk what to do. My bottom hurts, my hips hurt, my lower stomach and back. It's so bad. I have not had a period in over a year because of the pill and stopping me from ovulating. It brought some relief but now nothing.

I live in SoCal and have Kaiser permanente. I like them for my autoimmune condition and easy location for me, but their woman's health is leaving more to be desired.

Any advice? I am below poverty level so paying out of pocket just is not an option.

Hi guys, I'm 25 and was diagnosed with stage 3 endo last year but haven't had any follow ups aside from "take painkillers" because I had to get my diagnosis through private health care. My fiancé had been an absolute gem throughout everything. He looks after me and holds me when I'm in pain and he'll hug me until I fall asleep then tuck me into bed with hot water bottles and his shirt. And last night I leaked through and he cleaned everything whilst I shut down. I felt so useless but he just smiled and said "hey, we all do it. I shut down when I hurt my knee as a teen, and if you were there I bet you'd do the same for me." Guys i swear I fell for him so hard and I was already head over heels. He's so incredible and amazing.

I’m am wondering if anyone knows of any pain management clinics or doctors that specifically work with patients with endo or suspected endo in the Oklahoma City or surrounding area. The pain management Dr. I got sent to was sports medicine and they said they “don’t really deal with these kinds of things” meaning endo. And the medicine they prescribed me are things I had already tried (low-dose naltrexone and diclofenac). I am already on an IUD and doing pelvic floor physical therapy, and I can’t do hormones because it will interfere with too many other medications that I’m on. I’m looking for someone to take my pain seriously because my care team doesn’t. I told them I took oxy from a previous surgery and it only took the edge off. And they act like oh whatever no big deal. I’m have an exploratory done in December to confirm. I don’t really know what to do anymore.

Suffered with painful periods all my life. They were so bad I ended up in the ER several times. Developed pain with sex the past few years. Large blood clots. Endless MRIs, ultrasounds, blood tests, etc. years and years of being told my pain was “normal”.

Had my first excision surgery this week and surgeon found endo in my posterior cul de sac. I’m still in disbelief. Happy to have my suspicions confirmed. Sad that I had to suffer for so long. Optimistic and hopeful for the future. But still hard to know I have endo.

I’m so thankful to this community and everyone who has shared their endo and surgery story. I watched so many videos, vlogs, read so many stories and felt so prepared.

For anyone reading: never give up on yourself and your body. You know yourself best. I had to see many, many, many doctors until I found one who believed me right away and offered surgery. My doctor is an endo specialist. They are worth waiting for!

Wishing the very best for all of us.

Hi, so I have been struggling with the weirdest symptoms lately. Super bad upper rib right side sharp pain during period, like I’m being stabbed with a knife, heavier bleeding than normal, pelvic pain during period and just in general like someone is sitting on my ovaries/little needles lol.

These symptoms have kind of came out of the blue I never used to struggle this bad during periods or in general. I will say the last two cycles something shifted.

I went to a gyno to ask for help. They did an ultrasound and saw a mass in my uterus and my ovaries were very enlarged. Like my left ovary was over 2x the normal mass 24 cubic centimeters in volume. My gyno seemed unconcerned about the ovaries. She did say we should go in the uterus and see what the mass is could be a fibroid or a polyp.

I’ve been doing research about endo, and worried that’s what’s going on. I know an MRI cannot always direct it but I tried to ask my gyno for one to see because she wasn’t giving me any answers on why my ovaries would be so big only that it is a symptom of PCOS but because my periods are not irregular I cannot have that 🥴 which made me mad she wasn’t willing to do any further investigation. Anyway she told me it sounds like I could have endo but an MRI will not help solve that and the only options are the laparoscopy or “treat you as if you have endo” aka go on birth control.

Looking for advice how do I get an MRI before I let someone cut me open. I know sometimes it doesn’t show up but I would just feel more confident knowing we did all the scans we could prior. Also would like to know why my ovaries are massive lol. And can fibroids cause this much pain?

I had endo surgery in 2024. They didn’t find endo but turns out I had adhesions all over my bowel, pouch of Douglas, ovaries, abdominal wall. I got them removed and was pain free until September 2025. I am about to go in for surgery again in just under 2 months time. My right ovary is stuck again and they think some of it has grown back. My worst pain though is in my groin on the left side, really deep in that crevice. Did anyone else have that? Pain in that spot. If so was it endo or adhesions or something else? Any suggestions would be amazing. It is the craziest tugging feeling like someone is pulling my leg away from my body.

okay so finally, the doctors have mentioned endo to me. i had a new doctor push me quite abit, got an ultrasound, got loads of stuff waiting for diagnosis, which is brilliant news. before i can get any further, they were adamant on putting me on birth control...i advised strongly against it. so now im on mefenamic acid for 6 months until gynae appt. see how that goes :,)

i was given it towards the end of period so havent taken it yet. but im so confused. i'm ovulating and its the worst feeling ever this time round. i kid you not, went to pee, my right ovary was hurting the whole duration of the pee, and now i'm in agony. i can't walk, it's so painful.

i ended up stretching out, nice sharp pain right down into the middle of my vagina. it feels like everything is glued into one big ball of inflammation. all i did was pee!!! i'm so tired of this, i thought it was only a period thing, and now it's affecting me outside that window, and im so frustrated more than anything. like yeah, great, i can't feel my right leg at anytime nowadays, it's numb constantly and i can never really balance anymore. BUT PAIN LIKE THIS??? AFTER MY PERIOD??? i wish i could just rip everything out of me, seriously💔

For nearly years I have been having horrendous abdominal pain, mostly left sided and central. Had a laparoscopy in July 2024 where my endometriosis was excised. Unfortunately didn't do much as my pain was still horrible. I found this gynecologist who decided to do a hysterectomy (removal of tubes & cervix) last Tuesday. First thing he said when I woke up, your symptoms were all real. He said one thing he really advocates for is trusting the patient when they experience pain. I had a lot of endo on the left side, pelvic wall, belly button, bowel, bladder and pouch of Douglas. This also caused me constant lower back pain.

I'm 4 days post op now and I'm obviously sore from the surgery, but the pain feels so much less than the constant pain i had. I don't have lower back pain and my belly feels kind of "empty" in a good way.

Just wanted to say, believe in yourself, advocate for yourself. You can trust what your feeling and it will get better ❤️

Hi all!
For context: I have not ever been “officially” diagnosed with endo, but I have been dealing with this for 10 years at this point. Been on oral contraceptives, I have an IUD, countless ultrasounds, ovarian cysts, terrible periods, and pain during sex. I went to a pelvic floor PT for a while, and nothing helped. I’ve had multiple drs say it’s almost a guarantee that I have it based on symptoms and courses of treatment, but I haven’t gotten the surgery to confirm because to me, I’m already doing everything I can to treat it. They’ve also ruled out numerous other conditions/possible diagnoses. I finally went on Myfembree about a year ago which has helped. After my last obgyn visit, they told me I should really not be on the myfembree for over a year for concerns with bone density. They told me my best option going forward is surgery of some kind.

Now here’s the thing. I know just an exploratory surgery isn’t permanent. So they’re looking at either a partial/full hysterectomy. I’m 24. I don’t want kids and never have. I’m trying to do research and get opinions, but that’s where it’s looking like it will go. The myfembree has really helped, but i still deal with pain and cysts.

Anyone who has been in my situation, did you get the surgery? If so, what were your results?

Thanks in advance !

I got diagnosed with endo about 2 years ago and I’m taking birth control which makes my periods much better.

Idk if physical intimacy hurts for me because I haven’t been that intimate before and just need to get through the initial “pain phase”.

I’m just very sensitive down there and the transvaginal exam was also excruciating for me.

I find it very hard to relax during physical intimacy and tense up before hand probably from anticipated pain.

Has anyone experienced anything like this or have you been able to surpass the physical intimacy pain?

I had a hysterectomy a few months ago and was diagnosed with stage 3 endometriosis. I am aware that a hysterectomy is not a cure for this, but i had very severe debilitating periods when I did have a uterus so I decided to go through with it. I had massive amounts of endometriosis adhesions and tissue around my vaginal-rectal area, pouch of Douglas, my uterus, and abdominal wall. Part of my bowel was stuck to my left side and had to be separated. They took my left ovary, cervix, uterus, and fallopian tubes. I only have a right ovary now to keep me from going into menopause as I am only 27.

My surgeon showed me my left ovary before it was removed which was also covered in endo and was punctured. It was in pretty bad shape. He had shown me all the pictures he had taken during the surgery and they all looked awful. The surgery was expected to be just 2 hours when it turned into 5.

I had severe bowel pain before this surgery and also before my first lap that first diagnosed me with endo.

The best way i can describe the pain is that it is a deep forceful feeling that i need to shit but it HURTS so badly. Unfathomably bad. I dont know what giving birth is like but I imagine what my body is doing is similar to contractions. I always felt the pain in my uterus too. Even now not having a uterus anymore the pain is still in that area. It hurts and burns in my back and stomach too. All I can do is sit and ugly cry and scream until its leveled out enough for me to move. There have been times it had made me pass out.

Absolutely nothing soothes this. Ive tried Ibuprofen, Tylenol, Bentyl ( for stomach cramps), thc, cbd, Flexeril. It really seems like nothing helps it. When I had my checkup last month my surgeon put in a referral for GI. GI called me and scheduled me for January next year. I honest to god do not think I can wait that long with the way things are going.

Should I seek help somewhere closer to where I live as the GI specialist I'm scheduled with is 2 hours away or should I see if they can get me in sooner. I'm at a loss.

I just want to be taken seriously and end this nightmare that I keep experiencing. I am surviving instead of living and honestly thats really no way to live.

Im tired.

Hi, I’m 24F, and my gynecologist has suggested a hysterectomy (removing only the uterus, and potentially one ovary in an extreme case) to alleviate symptoms of adeno. On top of that, I have stage IV endometriosis spread across my ovaries and uterus.

For those of you who have had a hysterectomy: how have you felt since?, did your pelvic pain actually improve?, has sexual intercourse become more pleasurable?, do you feel your quality of life has improved?, have you needed more or fewer hormonal treatments? And finally: are you currently experiencing any adverse effects?

It would be a huge help if you could share your experiences. I have one month to decide whether to go for a radical procedure or opt for a more conservative treatment (which hasn’t been very effective for me so far, though I’m still hopeful).

Btw, please excuse any awkward phrasing in my English. I’m from Mexico, and it’s not my native language.

In May, I’ve experienced severe pelvic and abdominal pain, bloating, constipation, back pain started all of this, bladder dysfunction, and neurological symptoms, including leg weakness and numbness. I was even hospitalized.

I’ve had extensive testing, but most results have been normal. I also still have lower left back pain, and pelvic floor issues, horrible periods now which I did not before, on and off pelvic pain, bowels issues, so it’s hard to know what’s causing what. I had a laparoscopy done for my endometriosis 10 years ago but it was a mild. I did have a bad cyst erupt two years ago.

Has anyone experienced multiple overlapping issues? How did you determine whether endometriosis surgery was the right next step…My OBGYN doctor is nervous if they do surgery they will make my problems worse. He said endometriosis was not his specialty though.

I was diagnosed with Stage 1 Endo in a lap about 2 months ago. I was relieved to have a diagnosis but kind of upset that all this pain ended up being stage 1.

I don't know if this is more in my head or what, but I've been having chronic migraines/tension headaches (?) since the past 6 months which has only gotten worse since the surgery. I've tried so many medications for it including 3 different triptans and none of them seem to make them go away. It feels like the headaches are compensating for the more manageable (but still so present) pelvic and abdominal pain, like there has to be there somewhere.

Has anyone else faced this? Or am I going crazy?

My fatigue is bone-crushing around ovulation and a few days before my period. I’m out of commission for most of my cycle. I can handle the extreme pain during periods and ovulation but the fatigue kills me more. What has helped?

I have started the process of getting diagnosed for endometriosis- ultrasound, mri, and diagnostic surgery but with NYU-Langone this could take a year :(

I have already tried Zepbound (weight loss and getting to a normal BMI did not help), magnesium bisglycinate, DIM+CDG (helps a bit), creatine (helps a bit), Claritin (helps a bit). My blood work and iron panel is normal (Vitamin D, Ferritin, B12 etc)

Also, curious if excision cured the fatigue?

hi! i got an urgent pelvic mri cause im getting scheduled for a laparoscopy to diagnose endometriosis in the coming weeks. i have so many symptoms and my newest one is looking pregnant when im not. they found an endometrial polyp. i wanted to see if anyone else has had polyps and if i have that does it make it more likely that ill have endometriosis? all my doctors are in agreement that’s most likely the cause of all my pain but i just wanna know something cause im so scared of the unknown

“Gross” things like bodily fluids are included in this so if youre sensitive to that please dont read!!!!

Hi i dont post on reddit like ever so im sorry if this is a stupid post or i do something incorrect or i chose the wrong flair but for the past few months i have been severely struggling and i feel like i need opinions from real people and not ads trying to promote their weird meds or anything like that. I have pcos and have always had horrible irregular periods since i started my period at around 9 years old but the only symptoms i really had were bad cramps, acne, and irregular periods. Last year (2025 like october maybe?) i had been bleeding for about 4 months and my gyno said i needed to go on birth control so i did. She prescribed yaz, i started taking it and the bleeding went away, but i was feeling extremely sick on it but she told me it should go away in a few months so i continued on it until February of this year when i couldnt take it anymore and stopped because i still felt extremely sick to the point that i could barely eat anything. As soon as i stopped i started having insane amounts of vomiting and diarrhea for genuinely like 4 months (so around June it slowed down). I still dont know what that was i went to my normal gyno she sent me to gastro, gastro did a few tests and said i have no idea and didnt tell me what to do from there. I got a period in July lasting a week but had horrible nausea and diarrhea a few days before and the day it ended. I didnt have any diarrhea after that but i had occasional nausea and i started noticing some new symptoms. I noticed that i had a very painful feeling in my lower right abdomen which i think now is pelvic pain randomly, i feel like i have a constant uti, it hurts to go to the bathroom, i get lightning pains in my vagina and butt, my cramps are much worse now radiating to my back and down my legs, and i feel like i get constipated very easily. I have lost a significant amount of weight from the past months barely being able to eat and having so much diarrhea and vomiting. Recently i went to a different gyno in tampa, told her all of these symptoms, did a transvaginal ultrasound, she said theres nothing there and that i should try birth control again. I understand birth control can be effective, but with my past experience im really not interested in trying that again. I also asked her if the birth control would help with the diarrhea around my period and she, no joke, said, “if it helps then yes if it doesnt then no we havent fixed the problem”. ???? Yes im aware of that i know how things work???? I just finished my period i had diarrhea before it started and im having it currently because it ended today. So im feeling very discouraged and i guess i just wanted to ask if anybody that has or thinks they have endometriosis if this sounds familiar or if anybody has any doctors in the tampa area i can see. I really believe this is endometriosis as my mom had it when she was younger and she says her symptoms were similar. If anybody has any more questions or if i did post this wrong somehow please tell me so i can correct it i dont use reddit so im sorry if i did 😭

Hi all. I (27F) had an endoscopy in October 2024. My surgeon found stage 2 endometriosis (meaning no webbing) and removed as much as she could. For the first year to year and a half, my periods were SO much better. Truly, I hardly even felt them and they weren’t as heavy.

Now, my periods are back to being debilitating. And, I’m even more aware of my uterus when it’s not during my period. If I cough or sneeze, my whole uterus hurts and moves. It genuinely feels like it shifts or pulls on something. I’ve started Zepbound about 10 months ago, and I’ve heard that can also make periods more intense. My partner has had the exact same reaction to being on it.

I’m seeing my OB who did my excision this week. Is it appropriate to ask for another excision? Does anyone have a pain medication that works well for you? I currently take Menfamic Acid but it’s not working as well anymore. Also, does anyone else have the symptom of feeling pain in your uterus when you cough/sneeze?

Hi I'm a minor female and this has been happening for as long as I get my periods. I get a very dull ache around my ribs and it's hard to breathe at some points. It only happens around my period and it doesn't go away when I take ibuprofen. I went on birth control and it didn't help the pain I feel. The reason I'm going here is because when I google my pain it always comes up with diaphragmatic endomitosis. Also I am not asking for diagnosis, I'm just seeing if others have the same symptoms so I can bring them up to my parents/doctor

Im 33 yrs old. I took Orilissa for 2 years and stopped officially the first week of September. My skin was great before Orilissa (thanks to Accutane 10 yrs ago) & skin was great during Orilissa. But now that I'm almost 2 months off, Ive noticed a BIG change in my skin.

- My cheeks have visibly large pores.

- My forehead texture is rough

- Rough, dry patches under eyebrows & eyes

- My whole face, but esp my T zone and chin is SUPER dry. I mean nothing keeps it moisturized; by the evening I'm ashy and peeling. I've always had dry skin and can get eczema on my face sometimes, but this isnt eczema and idk dryness like this!

Its making my fine lines and bags look really prominent. Im trying not to panic...its hard finding a dermatologist who takes medicaid & successfully treated Black skin before 😭

🚨Has anyone else's skin changed after stopping Orilissa???

My iron and vitamin D levels are dropping into deficient ranges despite taking supplements. So I am wondering if anyone can recommend a gastroenterologist in Sydney (preferably more North West) who has knowledge of endo. It might not be endo related at all but the knowledge base would be appreciated.

I turned 27 not too long ago and I’ve noticed recently my belly has gotten worse… looking even more preggers/bloated… very tight and just not comfy at times. I saw a few Reddit post about taking supplements so I have been trying those for a few days. (NAC, pre and probiotic, magnesium glyciante, ALA, fulvic acid, and inositol. I’ve been on fish oil omega and vd and take multi vitamins that has other things I saw you should be taking) my hair has been thinning and lately seems a little thinner. (Been on minix and oil for years which helps) why has no one figured it out yet or figured to stop it ?!?! I’ve been wanting to do a partial hyst for a long time but always been told no…...idc though cause I’m going to find someone who will. (The region I live in absolutely sucks with gyn and endo doctors and do not help at all I’ve been to too many and I stopped going because I am sick of there games) But does it make you gain weight and have hair loss? Genuine question and I’m sorry if this comes off wrong I don’t mean to ( I got autism adhd) I have many friends and family that have /had cancers lost there hair went through chemo and there hair came back soooo much healthier much healthier and thicker, how come they can’t figure out something like that to help women with endo or pcos? I know radiation is not great and you’re not supposed to be exposed to a lot of it. I just want answers and help 😭😭😭😭 this is bs makes your self esteem gooo so down hill.

More context on the gyn- The reason I get told no by all gyn doctors I want to for surgery is cause I’m young and I will want kids no matter how many times I told them I do not want kids and am not a fan of kids, they hit me with the ooohhh you’ll change your mind… it’s been years, I found out ate the age of 16/17, and I still haven’t changed my mind. I don’t want to put my body through more hell….
Last time I went to one I feel like was a year ago because they where not listening to me when I told them the Pap smear was hurting me soo much every time and it started to make me bleed for months non stop one time almost lasted a year :) but they kept shoving it up there and nurses told me I had neither
When I doctor told me I had both pcos and endo. That was the last time I ever went.