diagnosed years ago after emergency surgery. been hell to deal with. our condition is painful but worse than that is pure disregard from medical teams and very long waits just for a scan. I heard this from someone else but I’m considering lying about trying to get pregnant so they actually take my issues seriously. I know that’s pretty fucked up but it’s fucked up they don’t care about women’s health unless you’re providing a baby. Please don’t flame me for asking this I’m just wondering for people that try to get pregnant what steps do they take to give you medical care

I really can't. I've done everything right. I've seen countless doctors, been prescribed endless medications, I've had surgery, I've done pelvic floor therapy. Nothing has worked.

My baseline pain is 8/10 all day, every single day. The nights as so bad I almost scream from how bad it is, but I won't go to the hospital, because they would treat me like shit. I know they would. I've already experienced that first hand. I have so much trauma from hospitals and medical staff, that I'd rather kill myself than go to the hospital. But I'm in so much pain every day that I feel like I'm slowly dying. I do nothing but suffer constantly.

I can't sleep. I haven't slept in weeks. I can't eat. Im losing a lot of weight. I can't see my best friend, who's taken time off work specifically to see me. I can't move without feeling like my body is screaming at me and falling apart. I can't relax, because I can't stop thinking about my pain. It's making me panic so bad, I struggle to breath. It's endless. I'm only 28 and my life is completely over. I hardly lived a life at all, and it's already done. My waking hours are nothing but panic attacks and pain. There's no relief or fixing this for me. I'm broken. Every morning I wake up and want to cry. I keep wishing I'd just die in my sleep or experience an untimely death. I'm already dead.

I don't have a life anymore. I don't feel human. I'm devastated at what my life has become. I don't think I can't do this any more.

Okay ladies, so im on month 4 with dinogest (vissane) and painwise its been 10/10. No periods, no pain, no cramps, absolutely amazing.

However, im now starting to experience severe anxiety headaches, hair loss, palpitations etc and iv been suggested to switch to ryeqo as it has the added hrt.

In my case im really scared to make the switch because I dont want my endo symptoms to come back :( so I have asked my specialist if he can recommend a estrogen only patch like a low dose to see if that can help with these psychological side effects.

Has anyone here done that, taken dinogest 2mg with a hrt patch. Does it work? Isit a thing?

I’ve gone into a bit of a rabbit hole about tampons after reading a load of research about heavy metals. I’m struggling to get pregnant and stay pregnant (thank you endo and pcos).

I’ve switched from Tampax to TOTM this month and I can’t believe the difference. I’ve obviously still got cramping but I didn’t take naproxen and it was completely manageable with ibuprofen. One night I ran out and so used Tampax again and I had noticeably more pain.

Is this just a weird month or could this be a thing?

I’m day 5 since my surgery. I was doing really well but now I have some stinging and burning sensations here and there (inside, not my cuts, they’re closed and looking good so far) and I have more sharp pains.
Is it normal to do good then it suddenly seems worse? Or did I over do it by walking? Is this something to bring up to my doctor?

So I’ve been diagnosed with Endometriosis for 3 years, I had multiple large endometriomas, multiple surgeries and eventually an ovary removed. I’ve been on Orilissa for over a year and haven’t had any symptoms of endo since. Until a couple weeks ago… I had a period and it was beyond painful, I had never had a period like that before it burned and stabbed and felt like when I had an endometrioma leak but worse. Then tonight I feel the burning that I associate with endo and when I go to the restroom and my discharge is bloody. Has anyone had something like this on Orilissa? Could this mean I have another endometrioma? Does anyone have any input at all? I’m so scared of going through what I djd before.

Just had my first lap and excision and they found it! I have been feeling so anxious leading up to surgery and so worried that they wouldn’t find anything or that it was all in my head. They ended up finding and removing multiple lesions as well as my appendix that was in a weird place (I guess) and adhered to my muscle wall. All of that has gone back to pathology to confirm and check for microscopic endo but UGHHH I just needed to rant somewhere to folx who would understand this feeling 😭❤️

31F with stage 4 endo here… does anyone else suffer from random bouts of sudden extreme fatigue? I suffer from general fatigue most days but this fatigue is different from that. I can be fine feeling as normal as I can be then out of nowhere it feels like some flipped a switch and I can barely keep my eyes open. This has been happening since I was first diagnosed but has only been getting worse.

Does anyone else experience this or have any tips on how to manage this?

Hi all,

This subreddit has been so helpful to me on this journey so I want to take a minute to thank all the women who lend their time to answer my questions and others! Anyways, lately I’ve had to fully cut out caffeine which ,I’ll admit, I have been very dependent on over the years to help manage my chronic fatigue. Cutting it out has been so rough and I just don’t know what to do about it. It’s seriously starting to affect me in my everyday life. What do other women do to help with this severe, bone deep exhaustion?

I have been diagnosed with endometriosis in 2023 and have been dealing with painful periods for years, but lately the pain has been getting worse.

I had another ultrasound yesterday and found out that my endometriomas have grown quite a bit and there are new ones aswell, since April.

The largest one on my right ovary went from 2.4 cm to 4.5 cm, and I now have three cysts on that ovary. The one on my left has grown from 2 cm to 3.6 cm. My fibroids have also increased in size.

The report also mentions kissing ovaries and that both ovaries appear to be stuck to my uterus.

I've been getting really bad pelvic pain, especially on my right side. Sometimes the pain comes on suddenly, and even walking can be uncomfortable at times. I tried dienogest for six months last year, but I was spotting almost constantly, so I stopped taking it.

When I previously spoke to my gynecologist about surgery, I was told that the cysts needed to be at least 5 cm before surgery would be considered and that I should take ibuprofen for the pain.

I'm honestly getting frustrated because I feel like I'm just waiting for things to get worse. I'm not planning on having children anytime soon, and I'd really like to find a way to manage this without being in pain all the time.

Has anyone here had surgery for endometriomas smaller than 5 cm?

Did surgery help with your pain, and were they able to save your ovaries?

One year ago, I had my first surgery (at 31) with traditional laparoscopy with excision of a lesion. This was with my regular OB/GYN. Afterwards, I was almost completely pain free. Until about 2 months ago and the pain has returned. My OB/GYN left, so I have established care with one who specializes in endometriosis. I had an appointment with him the other day and he wants to go back in with the robotic. He says he is finding a lot more lesions with the robotic lenses, and believes I have more lesions or that some were missed. If only one lesion was found before, could more have came back in one year on birth control or been missed? Or am I crazy? I will be so embarrassed if we go in and it is all in my head. My OB/GYN is so supportive and caring though.

Hi everyone! I have pelvic floor therapy tomorrow and honestly have no idea what to expect. If anyone would want to share their experiences I would appreciate it! I am mostly wondering what I should wear, and how draining it is or if it’s painful at all. I have work after in the evening and am hoping to still make it. Also wondering what I should wear?

I am about 3 months out from laparoscopic excision surgery and honestly been having so much bowel and bladder problems since surgery. Also haven’t had sex yet due to my specialists advice. Hoping this helps!

I’m stage 2, excised via laparoscopy in 2024. But they excised some and ablated some despite me expressing I don’t want ablation.

It was found everywhere but intensely on my left side pelvic wall and in my pouch of douglas. After they excised POD my lightning ass pain reduced significantly.

Now it’s back. My pain in general is coming back. I can tell it’s growing back. It’s agony. What the hell do I do? Anti spasmodics don’t do much.

Hi! I would love some help or any advice. I’m 23F and I’ve had 4 surgeries for my endometriosis, with my recent one being a total hysterectomy and I only kept my one ovary. (my right ovary had exploded so I only have one left)

In my findings they found both retroperitoneal fibrosis and uterosacral ligament fibrosis, but during the post-op nothing was said. I am in horrible pain in my back, bladder, and right side where the ligament fibrosis was found. I also have numbness in my upper thighs that hasn't gone away at all. I don't know what my next step is.

After doing research I’ve discovered that both conditions found are something serious. I’m already here due to my DRs neglect, and I’m worried that if she continues to be dismissive my condition will only worsen.

I had pretty extensive excision surgery about 5 years ago. I was diagnosed with stage IV endo then, after many many years of suffering. The surgery went well but I do have a lot of internal scaring because of the extent of the surgery.
All that to say, I’ve been followed by my surgeon (who is great) once a year for ultrasounds to follow up ever since my surgery. I have external and internal ultrasounds done each time. The external is always the most painful actually, but both cause a lot of discomfort and pain.

I’m always anxious before my appointments because I know what’s coming and so does my body…
After my last ultrasound I started having a lot of pelvic pain… like 10/10 pain. I thought I was having a ruptured
cyst it was so bad. I became bedridden (other than using a walker to get to the bathroom). I couldn’t lift a single thing and needed help with absolutely everything. Luckily I had the help. That was 6 months ago.
I’m getting around a bit better now, still with walker. But I am still totally dependent on help. The pain has gone down to about a 2/10 as long as I don’t move in the slightest wrong direction.

Turns out… it was a “full pelvic muscle and nerve spasm”. Has this ever happened to anyone before!? I am losing my mind. How is this happening for so long??

I am doing pelvic physio and they are really great. It has helped get me to where I am.

I understand that my body had a “bracing effect” after so much trauma to that area but this is really something.

Does anybody have any insights on this? Anyone experience anything like this and what did you do??? Please help.

Endo friend

Had an endoscopy today to check for Hpylori/Celiac and they unexpectedly found a 12mm submucosal lesion. I will need another operation to biopsy/possibly remove it and determine if it is leiomyoma, GIST or a carcinoid tumor. In reading about leiomyoma it seems to be very similar to uterine fibroids, just occurring in the intestine. I have had endo all my life and it was confirmed in an excision surgery by my regular OBGYN a few years ago, coupled with a tubal ligation. I have not bee able to see an endo specialist or have extensive exploratory surgeries so I don't know the extent of other areas.

i’m 20 years old, never given birth and never had major trauma to my perineum. currently getting investigated for endo but i was wondering if anyone else has this problem - even if it’s unrelated.

if i have sex, or move my legs in angles too fast, bend into a squat, wipe myself every so slightly wrong, or even have a slightly hard bowel movement, i get these surface tears on my perineum.

they sting like crazy and sometimes bleed. whenever i look, the mini tear is a straight line down. i’ve developed now what looks like two scars that go down towards my bum either side of my thigh creases. the skin of my perineum is so tight at times, and other times it’s comfortable.

i typically always come away with some form of mini tearing after sex, although, i usually don’t feel it until i pee after or hit it at a wrong angle when doing something like changing positions. however, i tend to feel the tears happen in other situations.

it’s the healing process of these mini tears that hurt so much, i constantly reopen them at work due to moving lots or using the bathroom. it frustrates me so much!

i don’t know if it’s anything to do with my oestrogen levels, however, i’m on contraceptive that contains that hormone so forgive me if i’m incorrect - but shouldn’t that be increasing my levels anyways?

i don’t know if anyone else experiences this lmao, i just want to not sound like a crazy person telling my close people i get vaginal tears from basic movement

I hope everyone is having a positive day!
(London based)
I am just seeking for advice, would be happy with any.
It has been 18 years of all the typical symptoms of endo and autoimmune alike. I have had countless tests, scans, procedures - pushed from hospital to hospital, and finally with a endo specialist but...many results are not recorded meaning I have to repeat time and time again including MRI (1st MRI was told verbally about cyst but record is not on my profile)...

I am a full time teacher and I am really struggling physically and mentally at work. I hide my discomfort as best I can and unfortunately I do not have the funds to go private right now.

Does anyone have any advice at all, I know there may not be any more but there may be something I have missed.
Thanks for any reply

Hi everyone. I had my laparascopic surgery to remove ovarian cyst almost 3 months ago. I have persistent numbness in my left thigh and sometimes have electric shock like pains. The doctor is completely useless, he said the nerve was severed and it will take time for it to heal. I am curious if anyone else has experienced this and if numbness persisted or altered how you feel your leg months or years after surgery. Im only 22 I dont want to completely lose feeling in a big chunk of my leg. The reassurance from doctor was mediocre at best. Let me know if you had this and how did it go, thanks.

Basically I went to the gynecologist I was pretty emotional during the session soo we didn’t do much but I just told him my history with my period. He prescribed me yaz pills but I have been unsure about taking them since seeing all the side effects online. I need to understand the real benefits of this pill like I get it stops period pain but at what cost bruh or should I just take Mefenamic acid. Please help I am super conflicted what long term benefits does the pill offer compared to just taking a painkiller I don’t understand honestly also I’m only 19 but my period pain has been getting worse and worse soo idk helpppp 😭 also opinions on levongorgestrel

I (35F) was diagnosed with stage 4 endo in 2022 when I had a giant endometrioma. After the surgery with Dr Christine Kneer-Aronoff (excision), I was finally able to carry our fist child. Then we decided to try for second, and since I felt the same symptoms resurface (mainly cervical pain during intercourse, painful periods), I had my second surgery with Dr Caroline Peterson in 2025 (ablation), tried conceiving again, had endo return only three months later, immediately had my third surgery with Dr Peterson (ablation again) and, luckily, conceived our second right away.

Now, 8 months postpartum, it appears that my fear that endometriosis has returned again might be a reality (cervical pain during intercourse, occasional pangs of pain around ovaries, no period yet). Now having the fourth surgery is not a matter of fertility as much as the quality of life -- I would very much like to be able to live and love without pain. After my last surgery, I was told that I have severe adhesions and would likely need a hysterectomy, which is something I do NOT want to do.

Has anyone else been in the same spot? Did anyone have a surgery for stage 4 endo without it coming back after a while? Is that even possible? Was anyone able to save their uterus? If yes, who was your surgeon?

does anyone else suffer from:
-angular chelitis
-seborrheic dermatistis
-menstrual gingivitis

Specifically surrounding period//hormone fluctuations?? I’m diagnosed endo stage 1 excised a few years ago and have had inconsistent access to Slynd which has been suggested treatment. I’ve noticed that these 3 symptoms seem to pop up concurrently when I get my period and actually just identified the menstrual gingivitis!!!
I couldn’t figure out why I was getting toothaches in my back molars for the past few months like clockwork but it’s over $600 for less than 90 days of Slynd
Anyways does anyone else have the same experience? Any supporting literature? Would love to hear from anyone in the same boat :’) especially if it’s more prevalent in the endo community idk

I am 52 years old and firmly in perimenopause. For the past 2-3 years I have had some pretty persistent hip and sacral pain. Since I am active and teach fitness classes, I really chalked it up to loss of estrogen and/or a possible hip labral tear.

Fast forward to about 6 weeks ago - surprise appendectomy! While in surgery, the surgeon noted that I had endo bad enough that it had twisted my ovary and adhered it to the back of my uterus. My gyno happened to be in the OR that day, and consulted on that repair/removal of endo. I initially felt very lucky to have this noticed and corrected!

However, at my post op with gyno, she said there was definitely more endo, and cyst(s) on my ovary. She recommended removal of my fallopian tubes as well which I am 100% down with. Ok, not really excited about another surgery but seems ultimately good.

My question: could my long standing hip pain actually be endo? Now that I have a new perspective on things, I wonder if endo has wrapped around my ligaments and/or joints which has resulted in my hip, pelvic and sacral pain? I have pursued imaging for a labral tear but my doc is making me do PT, all the hoops before I am eligible for an MRI.

I have an ultrasound with my gyno next week. I am trying to think in advance what questions would be helpful to ask. I’m pretty new to all of this, and being in perimenopause has a whole host of issues that are sometimes indistinguishable from endo. Anyone else in this boat? Advice? Suggestions, and your experiences are welcome.

Don’t read this if you get grossed out by poop talk

I had my first laparoscopy for my endo 9 days ago. By far the worst symptom post op has been pooping.

They had me on oxy for the first week due to the pain. It backed me up like CRAZY. I was also taking prescription strength laxatives at the same time. They didn’t work.

I’ve struggled with IBS as well as gastroparesis for years. This was like no other.

I’m now 9 days post op and off pain meds. My constipation has gone away but the pain when pooping is insane. Bleeding as well as pain. We’ve confirmed that it’s not a hemorrhoid or an anal fissure.

I have a tilted uterus towards my back and they took some endo out from behind it. Maybe that’s causing some pain while pooping?? Idk.

I’m at a loss for what to do☹️

Crossposted this

Hi all. I am recovering from my first laparascopic excision surgery. The good news is that I have the official Endo diagnosis. The bad news is that I now have PTSD from it. I know that we can never truly prepare for surgery and what is going to be different in our brains and bodies afterwards, but this is something I wish I had had more of a warning about. I've been trying to stay away from Reddit for many reasons especially about medical related things, but I thought if I could take the opportunity to share something that might help someone, that might be a good idea. I am not looking for advice or solutions, I just wanted to start the conversation and let folks know that the trauma is real. It sucks we have to deal with all this, and it's not fair. Love you guys 💕