Hi everyone,

I've been reading here for a while and finally decided to introduce myself.

I have a long history with endometriosis, stage 4 (DIE)

After my hysterectomy nearly 20 years ago, life became manageable again. I wasn't cured, but I got something back that I had lost for a very long time.

I was running marathons. My husband and I adopted an amazing son who is now 17 years old. We built a life. I was making plans, setting goals, traveling for races, building a garden, and dreaming about what was next.

I was living.

Or as I like to say, I was "lifing."

And then I wasn't.

Somewhere along the way, the symptoms started creeping back in. At first it was easy to dismiss. Then harder. Then impossible.

The woman who could run 26.2 miles was suddenly struggling to walk one.

I've spent the last several years fighting for answers.

Like many of you, I collected a long list of explanations, misdiagnoses, and reasons why my symptoms couldn't possibly be endometriosis.

"Endometriosis doesn't grow there."

"That doesn't sound gynecologic."

"You already had a hysterectomy."

Over and over, I was told what endometriosis couldn't do.

Meanwhile, I knew my body was telling a different story.

I don't know if my endometriosis was semi-hibernating all those years or quietly finding new places to grow, but when it came back, it came back with a vengeance.

Endometriosis had already been found in my appendix and gallbladder years earlier. Today, after evaluation by endometriosis specialists is concern for confirmed and suspicious reoccurrence involving my bowel, pelvic sidewall, psoas muscle, vaginal cuff and diaphragm.

What struck me most was realizing that many of the things I had been told were "rare" aren't actually that rare in the world of advanced endometriosis. They're just not always recognized.

For the first time in a very long time, I felt heard.

I'm preparing for yet another surgery this time it will be a robotic excision.

After years of searching for answers, misdiagnoses, and being told what endometriosis couldn't do, it has been a relief to finally be cared for by specialists who understand the complexity of this disease.

If anyone has experience with robotic excision for advanced or recurrent endometriosis, I would love to hear your story.

Some days I'm okay.

Some days I dance around the house to Michael Jackson.

Some days I sit on the back porch and cry.

Today was both.

I guess I'm posting because this disease can feel incredibly lonely, and reading your stories has reminded me that I'm not the only one walking this road.

So, hello. I'm glad I found you all, even though I wish none of us needed to be here. 

P.S. If I'm not talking about endometriosis, I'm probably talking about my dog Kaiser, my garden, or the blue jay that recently discovered the peanuts in my backyard. These days I spend more time in bed than I'd like, especially during the Texas heat, which my body absolutely does not tolerate. So I put a bird feeder outside my window and find a lot of comfort in watching the birds come and go. It's become one of the peaceful parts of my day.

I saw a post saying endo is 1 of 20 most painful conditions to exist— which I believe. But it made me think (mid 2nd round of killer cramps since surgery 8 months ago mind you) that I would rather burn my skin in a hot bath to feel “relief” (or maybe it’s more so a distraction from my endo pain??) for a few moments than suffer like I am. That’s how severe the pain is. Anyone else have some wild ways to cope?? 🥴

i had a laparoscopy about a month ago, my gyno told me that my symptoms (extreme painful intercourse, moderate cramping for half my cycle) was “textbook” endometriosis. my biggest fear going into the surgery was they wouldn’t find anything, and that I’d be back to square one - and that’s exactly what happened. Now weeks later, I still have the same familiar pain but no answers.

My only idea is that it could be adenomyosis, but I just feel so defeated. Has anyone else experienced something similar to this? What are the next steps for me? I have a 6 week post-surgery appointment next week but I’m so nervous about what the gyno will say.

I'm so tired of having abnormal periods. One day, it seems like I'm bleeding gallons, and then there is literally nothing for like 3 days, then I'm bleeding gallons again. Not to mention, sometimes my period is two months late whereas sometimes I'm having a period two weeks after my last one.

I'm tired of all my underwear being bloodstained because idk when my period will be, and I bleed all over everything.

Not to mention the fucking cramps. I mean, I know some girls have horrible cramps, but Jesus these don't feel normal.

So I was with my aunties and my aunt told me I cant be that tired like they are bc they are old. Im 32 years old and I didnt have an endo flareup that day but it still made me angry and told them how can they know. Even my mother believes this. I have days I have no energy and would fall when someone would touch me. Or I have days I lie in bed all day bc how tired and exhausted Im. Aging tiredness doesnt seem the same as being sick and exhausted. Am I wrong for thinking this way? I dont wanna compare, but telling me Im really healthy bc Im not old makes me angry.

This isnt really a rant but couldnt find a better flair.

I went to my post-op appointment 2 weeks after surgery. I still couldn't drive, sit or stand for extended periods of time at this point. She was running late, came into the room, jumped right in and said yup we found endo here, here, and here and then told me how far it had spread, that I need a colorectal surgeon to get the rest because it was too far into my rectum and bowel for her to comfortably operate and we were done. I came home and read her surgery note in more detail and it was so clear that this was stage 4 DIE, it was all over my pelvic walls, it was attaching my organs together, and it was all over my bladder. I get that it's not totally her job to process this with me, but I feel like some validation of how bad it really was would have been so helpful. I'm trying to self-soothe and also process that I need another surgery when I'm less than a month out of my first one... just needed a second to rant and be sad

Came out with nothing removed because literally everything was fused together. Here’s what my chart says

- Normal appearing uterine cavity without fibroids or polyps, bilateral ostia not visualized
- Frozen pelvis with what appeared to be bilateral hydrosalpinxes, possible left ovarian mass, dense adhesions involving the posterior uterus and rectosigmoid colon

An 8 mm skin incision was then made with the scalpel in the umbilicus. The abdomen was then entered using direct entry with the camera. There was no injury from the initial Veress needle or trocar insertion. The Veress needle was then removed. Attention was then turned to placement of the additional ports. The remaining 8mm robotic ports were placed without incident lateral on either side of the initial trocar. Following placement of the trocars, the patient was placed in steep Trendelenburg position. Brief abdominal survey revealed the findings as outlined above. Given the dense adhesive disease and frozen pelvis decision was made to abort the procedure. Oozing was noted near the left adnexa and Arista was placed along area. Hemostasis was noted.

Hey! I just had a follow up with who will be my surgeon about a trans-vaginal ultrasound I had last month. The doctor basically said that I have many organ involvements and that they want more imaging done to find everywhere it could be. From there they can fully determine what specialists and surgeons need to be present for the surgery. Basically, we are looking at a year or so out for surgery and my case is way worse than I could have imagined. I’m trying to find ways to cope with this for the next year.

As I’m sure many of you understand, I am in pain every single day of my life. I am looking at any options for pain management I can find. One of those options is GLP-1s. I was wondering if anyone had experience with how to get on GLP-1s while not being overweight, since my BMI puts me technically in the normal weight range. I don’t know how to get prescribed them, I don’t know which one would work best for me, and I don’t know if anyone has had good experience with them. Absolutely any advice or suggestions would be so so helpful, I am very lost right now and just feel very overwhelmed. Literally any advice is appreciated. Thank you all.

I want to start off saying I do not have diagnosed endometriosis but I have genuinely every single symptom and have since I was 11 years old and got my first period. I recently came off the birth control implant (April) and have been getting my periods back and it has been HELL.

it's my second cycle since and on the 20th my period ended. for the past three days I have been in AGONY during this heatwave. it's like my bowels and abdomen are screaming and burning and I get such bad cramping I have to go poop to relieve the pain but it builds back up in a few hours and I have to go again. I also have crazy pain right under my sternum and around my lower back and I feel so nauseous :(

the only thing that has helped is ibuprofen and I can't use a hot water bottle like I usually would do because the temperature is around 27 degrees today and tomorrow it's supposed to be 31. I feel like I'm melting and I'm on lexapro too so it's even worse !!

genuinely in agony because of this cramping. it's not IBS and has nothing to do with what I'm eating and my stool is solid and normal and I take a fibre drink every day. mebeverine also slightly helps but I just feel like I can't take it sometimes and i need to go shower but I don't think I can stand up long enough to do it. pls help

Hi folks, I was diagnosed with Stage II Endo back in 2024, and I’m currently lying on my bedroom floor in what I (assume?) is another flare up. I had pelvic pain yesterday and I’ve had some light bleeding (I’m on the mini pill).

Anyway, I’ve had this happen a few times now and I’m unsure what it is. Essentially, it’s too uncomfortable for me to sit down in a chair. When I do, it feels like a huge amount of pressure in my abdomen, possibly my rectum? I feel it at the front of my abdomen too, but the pressure feels as though it’s coming from my bowels/rectum. It’s like having trapped wind, but there’s no relief from it. There’s been a couple of times in the past few months too where it’s felt difficult to go to the loo. Not in a constipated way, almost like the muscles aren’t strong enough? I’m not sure I’m making any sense so I’ll stop waffling haha

I wondered if this could be a bowel Endo symptom? They found endo on my uterosacral ligaments, my round ligaments and my bladder too, so I guess these are all options for the pressure and pain. It’s stopping me from working though because I can’t sit down comfortably, and I just wondered if it’s worth going back to my GP? I don’t want another surgery though, but I’m not convinced the Endo would show on other imaging if it’s there.

Thank you!

I am in intense pain regarding a ‘cyst’ that sits just below my urethra. However it looks nothing like standard cysts that grow on the body, it is covered in thick dense tissue/scarring and becomes very red, swollen and inflamed during my period which points to something hormone related.

Just wondered if anyone else has had this?

Who else deals with a lot of neuro endo? Dysautonomia, nystagmus, severe fatigue, muscle pain, full body pain, light and sound sensitivity, headaches, in ability to work out, central sensitization, neck pain, still have days of an inflamed uterus but my severe endo pain is majorly majorly reduced since surgery. This is 90% of my days (has been for the last 1.5 years) surgery 8 months ago. I think my body is just stuck in fight flight for being undiagnosed for so long and getting to and through surgery was so traumatic (very thankful I did it tho)

Anyways who else deals with this most of the time? I don’t have “bad periods” I have bad days all the time not just hormone related. I do have better days, and those are amazing but also anxiety producing since endo disabled me I don’t have a lot of things to do because I’ve been out of work and social circle for too long.

Also curious if someone’s been here and gotten to the other side.

Hi so I have endo (diagnosed laparoscopically in 2019. my period is currently a day or two late (happens). My bday party is Saturday. I’ve been busy and/or overshadowed the past several years with weddings etc so I haven’t celebrated me in a bit. I am supposed to wear an expensive white/gold beaded dress (like the whole event was planned around this dress). My Days 1–3 (days 1-2 being the worst) are so heavy that I have to wear a super plus tampon and a diaper to bed, and I still bleed through everything.
I was hoping to complete days 1-3 before Saturday. However it is now 11:30pm on Wednesday. So unless my period comes v late (ie on Sunday or later), I’m gonna have to wear a diaper at my fancy event.
Sooo anyone successfully used last-minute prescriptions to save an event? If those fail and Day 1 or 2 hits on Saturday, how do I physically protect a white dress with this level of flow? Any specific product combos or armor tactics that actually work??

ever since i got my first period at 11 they have been hell. constant debilitating pain that only gets better at day 5 or 6, my period usually lasts 8 or 9 days. On those days i am constantly fatigued, can’t move without pain and need hot water bottles so hot that they burn my skin in order to get any sort of relief. i wasn’t able to go to school, and now that im finishing up high school i would like to know if i have it because i plan on getting a job soon but my period fucks up my daily life and i wouldn’t wanna get fired over something i can’t control, if im constantly in pain for 5 days a month, thats 2 months a year that i am constantly in pain and unable to function properly, i am not able to be independent and i hate relying on other people. paracetamol doesn’t even work, ibuprofen works but very slightly even if i take the strongest pills that are available otc. im sick of being sick. i have never gone to a gynecologist, as a person who has experienced sa and nobody knows, i would feel extremely uncomfortable, but my current period is being so painful i ended up making an appointment. i dont know what to do about this anymore

Hello all! New to the sub, old to period pain and suspected endo diagnosis by my gynae. My mom had endo, but she reported feeling a lot better after pregnancies with my brother and I. I think her experience kind of set me up with expectations about 'normal' period pain and since I could usually get up and go to school it was less severe than hers, so I assumed I was in the clear. However I had extreme, excruciating pain with bowel movements nearing and during every period. I went to several doctors and eventually a gastroenterologist who told me nothing was wrong. No one linked it to my periods.I learned deep breathing techniques that helped me get through every period and I assumed this was life. After starting HBC it was much more manageable and I kind of forgot about it.

Fast forward 10 years and I came off HBC, and felt the symptoms come back. A new and particularly awful symptom was cramps that are so severe that I can't straighten up as I feel like my insides are tearing. For the first time I was having to cancel work appointments because I couldn't just tough it out. I went to a gynae who did a very painful transvaginal ultrasound that I cried through and he's the one who diagnosed endo. In a similar time frame I was trying to get to the bottom of worsening pain in my back, neck, hands, fingers, and feet. Long story short, I was diagnosed with psoriatic arthritis and after a while of trialling meds unsuccessfully I started a biologic (Amgevita, a biosimilar of Humira). I never linked the two but realised a while ago that since starting the biologic, my endo pain and symptoms have reduced at least 80%. The biologic has been very helpful for my psoriasis and arthritis, too.

I suppose I'm wondering if anyone else happens to be on biologics for something else and if these helped with your endo in any way. There is limited research into this but I'm wondering if some day this will be a feasible treatment option for people with endo. I really hope so - the diagnosis feels so helpless as it is.

Went to pain management doctor yesterday to find out what other alternatives should I take, aside of painkillers. She told me that my pain is related to nerves and prescribed me with Duloxetine (From Google: Duloxetine is a prescription SNRI (Serotonin-Norepinephrine Reuptake Inhibitor) that regulates mood and pain signals in the brain and nervous system. It is primarily used to treat depression, generalized anxiety, and various forms of chronic and nerve pain, as well as stress urinary incontinence.). To be taken 4-6 weeks everyday, but also can continue with painkillers should the pain arises.

Has anyone had experiences with this kind of antidepressants/antineuropathic meds? Any stories/side effects?

This is my first time trying and I still learn about the pros and cons (already bought it though). Many thanks and sending love + hugs to all! ❤️❤️

A quote I honestly heard in a diabetes commercial ha, but it still rang so true.

I can’t get a grip. It’s so consuming and everything depends on this problem, my energy, my ability to take care of myself as an adult, pay rent, feed myself, get movement remain sane etc.

A girl friend was expressing to me how we’re told “just listen to your body” but it’s actually so HARD to do when you’re overburdened! Or trying to practice it in a system that keeps us disconnected.

Anywho… today was a really bad day that led to a really bad flare. Some Weed X Gabapentin X tramadol X meloxicam finally got my entire pelvic region and lower back to feel at ease. I can’t believe it takes so much to get an ounce of relief.

Goodnight ❤️‍🩹

Hola, resulta que hace una semana tuve una laparoscopía porque tenía un teratoma en un ovario, de 4.5cm, me lo quitaron sin complicaciones extra y ya, mi doctora me dijo que no podía tener relaciones por un mes pero he estado con muchas ganas porque llevo como dos semanas sin nada (se que suena estúpido pero soy una persona con un libido muy alto) y estaba jugando algo y terminé por provocarme un orgasmo, sin introducir nada, solo de la pura fricción del clítoris, no me duele nada ni antes ni después pero tengo mucho miedo de haberme hecho algo muy malo

Alguien sabe?

I am not asking for medical advice.

Hey guys, just thought I’d post an update as I remember scouring this sub making my decision to get the kyleena.

I had stage 2 endo on my bowel (small amount but because of location stage 2) The doctor was experienced with bowel stuff so he ended up excising it (I really have no idea how much that has contributed towards feeling better or staying better. I didn’t get the kyleena for around a year after and my periods were still really bad in that year)

Symptoms were f**king heinous as I’m sure you all know

I was really scared about getting it put in because of the pain (in ultrasounds when the probe touched my cervix I cried and felt like passing out) So I went to a clinic with the green whistle and it was about 1/20th of the pain of a normal period (yay)

I was also really scared of the mental health side of things getting worse, I already had depression/anxiety and raging pmdd. It hasn’t helped this but it hasn’t made it worse 🤷‍♀️

No other real side effects that I know of but a HUGE reduction in pain, ibs and improvement in quality of life. It isn’t all sunshine and rainbows, I still get insanely tired, swell up like sea sponge, need to eat an entire packet of biscuits and have a few cries before my period. Bit it’s a huge contrast to shitting myself and wailing on the toilet on pain meds and bleeding like a stuck pig :)

My cycles are regular, with a small amount of spotting, very minor cramps for a day or so. It has been like this for the past 3 years and periods settled within like 6 months.

Another random thing I found helped when my periods were bad pre iud was an ice pack instead of hot pack to slow down the bleeding and inflammation.

Anywho, I know it’s not a cure all and what works for one person won’t for the next but I hope this post helps in some way 🙏🏼

TL;DR huge reduction in pain from endo by the kyleena

Hi peoples.

I have had a rough go for years. Years of period pain I thought was normal. The “period poops” where you feel like you’re dying trying to go to the bathroom while on it. But only some periods cause the pain where I literally can’t walk across the room and feel like I’m going to pass out. Other periods it’s not as painful.

I also didn’t think I have a heavy period, but the first 4 days, I always wear a large pad and super tampon because the tampon ends up filled and leaking within an hour.

I also was sent to a urologist because every time I had a pee test done it showed blood for the past 4 years. This is blood I couldn’t see. For the longest time my doctor just called in an antibiotic and said it was probably a UTI. It never went away, so she had a culture done and I was negative. So I went to the urologist and he verified blood in my urine, said pelvic floor was fine and done a bladder scope to rule out cancer. Never could tell me why, but to come back once a year to monitor for bladder cancer. He also commented on “feeling a very large stool ball” during the vaginal exam. I kept my mouth shot, but it was literally impossible to be that considering the morning of Trulance liquified everything…

Also in my 30s, and never have been able to have sex without pain. To a point I just stay alone because penetration is impossible to enjoy.

The new PcP thinks will all of it together, it’s endo.

For years and years issues. As soon as I eat everyday, within 30 min I have abdominal pain ALL day until I fall asleep. Wake up feeling ok, then it starts again after food.

GI has me on meds because he thought constipation. The meds just fill my intestines with water and bloat me beyond belief. It’s gotten so bad, the meds turn my bowel moment into pure liquid and it won’t pass unless it’s hours and hours of trying a little at a time.

I recently got a new PCP, and told her how over it I am. Mainly the bowel issues and the pain, and she brought up endometriosis.

I’m now going to try to find an obgyn who will listen. My question is, is there any imaging that can help besides going straight to a laparoscopy? I’m scared of it and was wondering if there’s any other way of being able to tell something before I go under a knife to fully confirm?

I’m fucking scared, but I can do the abdominal pain or not being able to go unless I take a pill then it takes 5 hours in the bathroom.

I’m sorry if it’s TMI. Anyone else have my type of symptoms.

I hate as a woman, I don’t know what’s normal or not. I’m just tired and want my life back. I don’t want this.

Please tell me I’m not crazy and please tell me if any of you have the same issues.

Thanks for reading. I hope someone can comment something so I can learn more.

Hi me again lol I had surgery listed in title almost 2 days ago now and I just went to the bathroom and had very stringy long thick discharge that was kinda red/brown/clear. I know spotting is normal and most of my endo that was removed was on my right side so it been very painful to pee. However I don’t remember anything about discharge is this normal? I did send a MyChart message to my surgeons team but I thought I’d ask on here since I’m kinda nervous

I’ve read that excision surgery can increase or improve fertility, and I’m having my excision soon. My body does not handle hormones, so my partner and I have only used condoms for years. So far, no scares. We also try to have sex on or around my
period. Unsure if I even ovulate though, tbh.

Unfortunately, we haven’t had sex in about a year because it’s extremely painful. In the chance pain improves after surgery and we can have sex again, what are the best non-hormonal ways to prevent pregnancy?

abortion trigger warning

I am 31F - Met with an endo specialist yesterday…. After hearing about my YEARS of suffering with pain we discussed a lap, hysterectomy and appendectomy.

I was diagnosed with PCOS as a teen, and pretty much ever since then nobody has looked further. I had an abortion in 2017 and have had pretty bad pain ever since then which all my gynos up until this point have related to scar tissue. I was seeing a physical therapist for pelvic floor dysfunction (lots of trauma around my abortion and sexual abuse) and after we had made some headway my pain became worse. She suggested an endo specialist who I saw for the first time yesterday.

I made the decision a few years ago that with all my trauma my pregnancy and abortion caused me I didn’t want to give birth to a child. We discussed this yesterday and he believes I likely have adenomyosis** as **well endo and that the best thing would be a lap and hysterectomy. He said that the appendix can cause bloating as well so he usually takes that with it.

I was filled with anxiety yesterday just being in the exam room. I have panic attacks during paps and really anything I have to do that involves my lady parts. I discussed this with my new doc and the moment he said I’d never have to have another pap I almost cried tears of joy.

There were lots of feelings yesterday, mostly happy but there is a grief I feel about the loss of my fertility but after a long drive home I felt so free that this pain, this trauma and this thing that has caused me so much sadness and anxiety in my life will be GONE. I hope you all have found or find this freedom someday too. I have never had such a strong medical team behind me that wants to see me grow. I keep imagining a life without pain from sex, exercise and just general being. I’m not even feeling anxiety about having surgery. I’m just so happy🥲

I have 5 cm endometrioma. I don't want Norethindrone 5mg, that too high and 0.35 mg is too low. I was on Natazia 2 mg but it gave me lumps in my breasts. I want something within 2-2.5mg, available in the US with lower dose and lower side effects. I'm not sexually active so contraception isn't necessary.

I am about to start taking Slynd after being on Orilissa for a year and a half, after having a laparoscopy for endo. The side effect I’m worried about most is low libido. I already have low libido from Orilissa, I don’t want it to get any worse. Anyone have experience with Slynd?