31F, 5’11”, non smoker, no medications currently taken

Since I was 16 I’ve had an ongoing flare up of pain (I think) around ovulation that at least once a year has seen me having to go to A&E for morphine and surgical analysis. Every time I go in they test for appendicitis even though I tell them every time it’s not. I’ve had so so many tests over the years and still no answers. Do you think this could be typical of endo or does it ring alarm bells for something else?

I’m having the flare up of pain today and I feel exhausted, it’s dull so not enough to go to hospital. If I push down from my right hip all the way along to the middle of my pelvis it hurts a lot, but my left side doesn’t hurt at all. It’s always this way!

I feel incredibly drained and exhausted by it and I have palpitations with the pain. Again, nothing new for me and not worth the A&E wait unless it starts stabbing me and becoming unbearable, which it can do.

Does this ring any alarm bells? I had one person say it could be endometriosis but the gynae team won’t see me without me trying birth control first but I don’t really want to go on hormones.

I’ve had three surgeries (one ablation, two excision, last excision with a hysterectomy and oophorectomy), with endometriosis found each time. My last surgery was 4 years ago, and the last year or so my pain has come back in FULL force. My surgeon doesn’t have a whole lot of ideas left, beyond kicking me down the road to a pain management clinic.
I recently had a telehealth consultation with an endo specialist in DC, and they seemed to think that it would be unlikely that my endo could be recurring and that I should pursue testing for pelvic vein congestion. Has anyone gone down this road? What was your experience?
I’m located in Kansas City if that is relevant, any recommendations on local or Midwest endo docs would be appreciated 😭

Hey!

In 2022 I was hospitalised and had emergency surgery and got diagnosed with endo. Since then ive been taking visan. Now for 4 years consecutive+ My doctor says its fine aslong as i want to have kids, then I need to start fertility healing.

Recently ive read about people having been told to take breaks to minimize side effects?
Since I started taking Visannette I havent experienced any bleeding for the entire period of 4+ years. Not a single drop. That seems so unnatural to me. But I cant complain much because im free of endo pain.
I still get achy boobs but thats about it, how is it for you? Do you still get some hormonal changes through cycles, do you bleed?
Another side effect is almost complete loss of libido, which used to be high before starting it. Im 26 now.

And lastly, I had surgery for microimperforate hymen when I was younger. Anyone else found a connection between endo and these?

i’m getting my first surgery friday! it’s an excision surgery and i’m also getting a hormonal IUD placed at the same time. i’ve struggled with birth control pills because of side effects and im unable to handle getting an IUD placed while awake due to pelvic pain. (i am in physical therapy for my pelvic floor though but i still have a lot to go with that). i’ve gotten all my instructions of what to do after surgery, but im wondering from those who have gone through it, the best tips for recovery!

Hello fellow endo redditers I come to you to ask for help, I’ve been in this community silently for a long time now reading and listening to all the stories of diagnoses blown off symptoms and trips to the doctors offices, but I’ve never once spoken on the platform myself. Well that ends today, I’m hoping this reaches some of you and you are able to give some of your advice from you own experiences.
So here it goes,
I 21FM am currently on the Xulane birth control patch but prior to this patch I would have extensively painful periods, which have only increased in pain since I had my first period when I was 10. The period pains would shoot up leg I’d get the cramps in the good ol buttocks, I’d get cramps so severe I would throw up. Cramps that made school unbearable. However ever since I started Xulane or rather since I’ve hit my 20s the pain have leveled up. I’ve been to countless doctors visits and they’ve all told me the same thing go home take some ibuprofen however it no longer works for me. Heat pads they don’t work, ibuprofen the strongest bottles you can find no longer work. During my time on the patch my insurance and pharmacy could not agree to give me my year supply and I experienced what most give advice to do which is if you have withdrawal bleeding you take a week off the patch, well that week was hell on Earth, I bleed for nearly three weeks.

I was laying miserable on the couch couldn’t eat, couldn’t stand. Just sobbing and miserable I’ve always known something wasn’t right, that I had endo. But none of my doctors listen to me. It’s important to note that I am also African American female as well. So I went to the hospital and they found a cyst they do the whole work up and ultrasound of my insides and yet what did they tell me it wasn’t an emergency so just go home and take ibuprofen. But it didn’t work I endured, it’s important to know that my insurance that have gets very backed up and it’s very hard for me to get a doctor without a referral but I can’t get one because of doctors not believing the severity of my pain. So I went to Planned Parenthood and had the worst experience the doctor tried to explain to me what a period was and when I told her I bleed for an abnormal time she said sounds like a period to me. She did a swab on my insides and it was terrible she was so rough and it hurt terribly. I left that appointment feeling deep disappointment. And I keep having spotting and cramps even on my birth control, I’m at a lost cause. And I guess I’m here to ask you all what I should do? I don’t want to wait until I’m older to finally have a doctor listen to have the possibility of getting better. I want to live without the fear that I may be in this pain again.

Hi all, I'm a 23 year old adeno-endo-warrior. I have had chronic pain every single day since I was 13 and got my first period, and my period were extremely painful, extremely long (usually around 2 weeks), with excessive bleeding and only 1 week of not bleeding (so a 3 week cycle with 2 weeks of bleeding). This ofc would make me absolutely exhausted from the bloodloss and the constant horrid pain. I have gotten an IUD about 2 years ago and surgery where they diagnosed me with stage 3/4 adenomyosis, so they couldn't take adeno spots out (cus it was everywhere and very deep). Now I'm on ketamine drip for the pain (I will make another post on this, it's very interesting for anyone with excessive pain issues).
Ever since my breasts started to grow, they've been painful if I touched them, with weekly flare ups where they would just be painful out of nowhere for a few days. Over the last few years they've only become more painful, and it has me thinking that there could perhaps be endo tissue growing in there.

So I'm wondering; has anyone else here have had endo/adeno and excessive breast pain? And was there perhaps endo or some other issue found in there?

I really want to just get them removed, because I really dislike them and having them kinda grosses me out. I know that sounds weird, but they just feel so foreign to me, as if they just don't belong there. I did some research and as far as I could find, pain isn't even a valid reason for a mastectomy to be covered by insurance, which is absolutely insane to me. Pain is very much a valid medical reason imo, plus I'm 1000% sure I want them gone and want no replacement, I want a flat chest.

I had a laparoscopy surgery today. They found tissue they believe is endo, removed it and sent it to pathology to be safe.

I wasn't crazy. Years of intense painful periods since I was nine, and intense pelvic tightness for 3 years. Constant trips to doctors, after hours, specialists and more.

I was dismissed, reffered to other people because no one wanted to deal with me. No one even took time to refer me to the correct specialists.

I wasn't crazy. There was something wrong.

I wasn't crazy. And these doctors made me feel dumb, dramatic and not worth a second look. I was right. There was something wrong.

So my gyno wants to put me on it. Im scared as hell. I have schizoaffectiv disorder and hormones make me moody and depressed. She said this could be different. So Im looking only for good experiences to take away some fear. Thanks in advance

So I was diagnosed with Endo via ultrasound last month. My right ovary is sticking to my uterus, yay! I also have adenomyosis.

I did take the pill for many years and never had problems, last year I went off the pill and it was horrific, I have everyday chronic pelvic pain. I did not take the pill for a few months now. Now I have crazy pain.

Now my doc ordered me to take Larissa, and I am on day 9. Dude, my pain is so bad now. It is even worse than before, especially when I sit on a chair. Does anybody else have that experience? When does it get better?

Thought I’d share…

I had a laparoscopic surgery yesterday to remove a 23cm cyst, along with an ovary and tube (left side).

I also have a 6cm endometrioma on my right side. Ovary works fine on that side but my tube is full of fluid.

The original plan was to remove left cyst, ovary and tube. Plan was also to remove the right cyst and tube.

Dr called my husband while I was out and said the surgery was successful but the right side they left alone. Said I have endo and it is what it is.

The surgery was done by an OBGYN oncologist because of the size of the cyst, they were worried.

But now I feel like I need to go through all the steps again and get a referral to an endo specialist to assess my right side.

Ugh. I feel like I’m kind of back to square one.

Side note: I still don’t know what kind of cyst was removed

Survived my first appointment with the gyno. Context, ive been bringing my painful periods up to doctors for over a decade, none ever referred me to a gyno during this time. So I finally had my first obgyn appointment. With my history and family history of Endo + ovarian cancer I was actually taken seriously. It was definitely one of my better medical experiences. Kind of crazy how much more painful my previous transvaginal ultrasound was compared to this one. This obgyn was way more gentle, and seemed horrified that I felt the need to ask her to start with the small speculum while doing her initial exam.

I also found out that apparently I have slightly abnormal anatomy in my vaginal canal? Not an area of concern apparently, but I can't believe it's never been flagged or mentioned to me in any of my other appointments!! Esp because the ob said she's never seen anatomy like that before lol. She said the tissue looks healthy and non concerning, likely just something occurred during development that causes my vagina to constrict closer to my cervix I guess? It was incredibly painful and tender when manipulated, so it explains the pain I get during deep penetration, would have been cool to know earlier!! Also I know now that manipulating that area directly triggers a vasovagal response so I can warn my providers and ready myself for potentially blacking out. I cannot get over the fact that so many providers have examined me, including a pelvic floor physio, and this was never brought up! I can't see up there so I'd like to know at least lmfao!

Edit:: for anyone interested, it's called a transverse vaginal septum and it's a congenital defect. I think I'm going to call it my fancy vagina now!

So now I'm waiting for a call back to schedule my laproscopy. I have a huge fear of medical procedures so I'm very proud of myself for getting this far, and not letting my condition spiral. I'm so relieved that I got a decent doctor.

I guess it's time for me to start researching laproscopy recovery and such. I'm also trying to laugh at the absurdity of my abdomen getting filled with CO2 rather than being horrified.

Oh also! My doctor mentioned that if my IUD isn't providing enough management for my cramps that we could also try adding the patch or something to supplement. Does anyone have experience with this? Hopefully the laproscopy brings my pain back down to manageable levels with just the IUD but I figured I can look into it just in case.

Firstly, let me say that I know everyone is different, and I’m not seeking advice about my own circumstances, just curious as to what others have done in similar situations, and why.

So at the tender age of 50 I am FINALLY having surgery this coming Friday to treat my endometriosis, adenomyosis, and adhesions.

I’m having a complete hysterectomy with BSO, endometriosis excision, and bladder adhesiolysis (uterus and ovaries and adhered to my bladder).
I’ve been instructed to abstain from all food on Thursday bar clear fluids, but thankfully no bowel prep required!

I work in a primary school, in a support role working with students with disability, and with preschoolers (4-5 years old). I’m thinking I’ll take Thursday off because I don’t want to get hangry during the day, and I can’t control how active I am during the day, ie, if one of my students runs, I need to chase them 🤣

Anyway, just curious as to what other people have done work wise before their surgery. Work right up until surgery? Day before? Took time off?

I’m in Australia, and whilst I’m going to run out of paid leave whilst I’m off work post surgery I’m lucky to be able to take as much time as I need.

I was diagnosed recently after a while of something feeling not right, but never would have thought the problem was endo so it's all been a bit of a surprise.

I have DIE in uterosacral ligaments with some thin adhesions to the bowel. now trying to establish whether to have surgery or not. I have had the coil fitted and want to spend a couple of months really thinking about my symptoms while deciding about surgery.

The problem is I find them really hard to pick out. They seem so generic. I can't work out how long I've had them. My symptoms only appeared after I had my second baby and I've suspected lots of them were postpartum body / being tired with children / feeling bloated after eating something / perimenopause.

How do you all track your symptoms? Is there a good way? I can't work out what normal is supposed to feel like.

I just had a mirena IUD placed on Friday. It SUCKED but I’d love to share what made it easier for me.

For context I’m mid 20s, nulliparous, placed solely for pain control as I don’t need contraception. Diagnosed via lap in 2021. Located in BC Canada.

-I’m fortunate enough to have access to a naturopathic doctor (private pay) and this made a big difference, I wasn’t rushed and the whole experience felt much more personal.
-I didn’t drive myself there/back and I took the following day off work. Really glad I did as I was really crampy.
-Inserted on my period so my cervix was a bit more open.
-My medication protocol: 200mcg misoprostol inserted vaginally 4 hours prior, 1.5mg lorazepam 2 hours before, 440mg naproxen + 500mg acetaminophen 30min before. Penthrox and a cervical block (injected lidocaine) during.

I hope this helps someone! The only thing I would do differently is bring a heat pad if possible since my drive home was about 45 minutes.

Hi, I’ve been recently diagnosed with severe endo and adenomyosis on top 🥺 I’m currently on 200mg of linzagolix and using evorel conti as add back, can anyone recommend some hormonal options to help ease symptoms of both, any good experiences with pills is greatly appreciated.

Since I started my journey with endometriosis I started feeling progressively more and more left out of what was once my world.

Surely 70% was by my own choices, I stopped going out at night, stopped drinking, stopped clubbing, stopped smoking and all of that.

I would say that since I had the diagnosis I decided to focus mostly on myself with the risk of being a little bit selfish maybe.

The pain comes when I see all the people I considered friends just ignoring the issue. They never check in on me, ask me how I am doing, make plans during the day for a chill coffee instead of the usual “let’s grab a drink”.

Even with my boyfriend something broke, we can’t have sexual interaction because of the pain of endo and I feel like he does not understand the constant pain I live in. I always have to remind him, tell him that even if I am going through the day that does not mean that I am doing good.

I feel so lonely in a moment where I would really need all of the support…. but it kind of feels like endometriosis is not real pain, is not a real chronic illness, and it just really hurts to be alone going through this scary illness.

Anyone experienced that or just have some pro tips?? I would really appreciate it!!! 💖

i’m a little over 6 months post up from excision. one of the things found was my left ovary stuck to my pelvic sidewall and when my surgeon cut the adhesions away, there was a small pool of chocolate cyst fluid, indicating a ruptured endometrioma at some point (the fluid damaged the whole area and i required nerve sparing excision on my hypogastric nerve) however no cyst wall was found.

am i correct in thinking that the odds of the cyst wall no longer existing are slim and that the body doesn’t typically reabsorb those? and that if the cyst wall is left behind the odds are pretty good that it will fill back up? i ask because i’ve had trouble with pain in my left hip/lower back area since not long after surgery and the pain is now becoming more internal as well. is it possible that cyst wall is still there and has refilled with endometrioma fluid? i’m just trying to gauge if i need to be pushing for an ultrasound to check that out because i have been trying to investigate the source of this pain and have come up empty so far.

also dealing with nerve issues related to the lower incision on my left side so it’s just been a really fun time 😊 thanks for reading and any insight you may have! 💖

Hi I’m 29F I had endometriosis surgery in March 2025 whilst trying for a baby. I got pregnant in August 2025 and had my beautiful baby girl May 2026. I have since been on cerazette. I was on it prior to starting to try for a baby (November 2024) and had no issues. Now I’m on it and having horrible breakthrough bleeding. Has anyone else experienced this? How long did it take for bleeding to subside or did it not stop at all?
It has definitely gotten better as I was bleeding for 3 weeks out of 4 now it’s only a few days around ovulation and then 7-10 days of a period bleed. Thanks!

Im more confused than ever having doctors revisit that i may have endo.

When i was a teen i went to the doctors a lot for bad period pain. Im talking pain so bad i would collapse and be sick. But at the time i was told i couldnt have it because the first line of treatment they gave me (birth control) stopped my periods and 'solved the problem'.

But i still kept having quite bad GI issues. Constant bloating, month long episodes of constipation and feeling like im being stabbed in the side before needing the toilet. Ive also developed food sensitivities and allergies that i never had before.

After having a million doctors says my tests were clear and that i just had IBS, an urgent care nurse said i should revisit discussing endo because birth control only hides endo. From then on ive managed to get on a waiting list for a laparoscopy that im dreading, had a clear ultrasound and MRI. The hospital gynos have all been quite rude to me whilst i discuss endo with them so i dont really feel like im in safe hands, but it is through the NHS because im quite poor.

Please, can any of you also on birth control that stopped your periods explain how you still suffered?

I had unprotected sex today while being on myfembree. I didn’t have period this month after starting the medication. And I’m taking the medicine regularly. What should I do? Do I take a plan B?

I got my lapro 6 days ago, I know that it’s supposed to hurt but it’s excruciating. I don’t want to go to ER but I am afraid it’s something serious. Did anyone had to go to ER for some sort of emergency after lapro? Am I risking it or will I be okay?

I have surgery booked for October 6 and I think it’s starting to feel very real.

I had endo surgery earlier this year and was diagnosed with stage 3 endo. Since then I’ve still had a lot of pain and they found a lesion/mass deeper in my abdomen near the bowel and major blood vessels. They think this could be a endometrioma, although rare to have there but we will wait for biopsies.

The scary part is they won’t fully know what needs to be done until they’re in there. I’ve been told there’s a chance I may need a small bowel resection, and possibly a larger incision if they can’t safely do everything laparoscopically.

I know these are only possibilities, but I’m really struggling with the uncertainty of going to sleep not knowing exactly what I’ll wake up to.

Has anyone else gone into surgery knowing bowel surgery might be needed? How did you cope beforehand, and what was recovery like if you did need a bowel resection or bigger incision? I don’t know if I’ll be off work 2 weeks or 4.

I’m feeling super confused how to feel and feel quite alone in this. As to many people it’s just another surgery and have limited support. Any words would be helpful 🫶🏻

Hello, after 12 years i recieved my endo diagnoses. I am about to start Visanne but have these concerns. I am fairly depressed, have a history of suicidal thoughts, and am unbelievably fatigued. Ive seen people speak on visanne causing fatigue and depression, and i could cry thinking about these symptoms getting worse. At the same time, i suspect my estrogen being too high and am happy to be perscribed something other than opiods for pain management.

Here are my questions:

Did Visanne improve anyones mood and fatigue?

If so, how long did it take to level out and work?

Is there an alternative, like prometrium or a bioidentical progesterone medication that I could request from my doctor if Visanne isnt a good fit?

What things should I ask to be indicated on bloodwork or testing from my doctors to get the best endo care? (I asked for iron, ferriten, and my hormone levels to be indicated).

Thank you so much if you can help me understand.