can our endo be transfered to another person? i am an organ donor. nd i just realized that maybe I shouldn't be if I have endometriosis? what if my endo could get passed to another person. another healthy women who doesn't have endo?
I keep hearing about it helping but not sure if it’s real long term change or just temporary relief.
Hey everyone, I haven't had surgery in 20 years and I'm 41. I will be having the lap procedure Monday. I was asking the Dr. Questions and ended up crying when telling him I was nervous about the anesthesia. That's all I'm nervous about. And signing the forms with risks of death.
He just looked at me stone cold and I felt worse for crying, but I didn't apologize. I had no idea I would cry out of nowhere.
I just needed someone to hold me in that moment. (Not the Dr lol). But I feel like this is a lot for us women.
I could use some hugs.
I had surgery in June 2025. Stage 4 endo. While it changed my body positively in the endo aspect I feel like it negatively changed my body in my body aspect if that makes sense. Meaning I can’t lose the weight like I once did. My stomach area just looks different. My thighs aren’t as toned. I will also say in July of 2025 I turned 30. My routine hasn’t changed but I feel like my body did. Did this happen to anyone else? Almost like it just doesn’t fully feel like it’s my body anymore
Like holding back the part where you knew something wasn’t right even when reports said everything was fine
Hi there everyone, something that's been on my mind recently nd I'd like you all to have opinions on.
what is it about endo that we've been recommended so heavily by so many people to find a specialist, rather than an OB/GYN? since OB/GYNs specialize in female health, what is so unique about endometriosis?
Over the last year it’s gone from my normal 2-3 days of period pain (which to me feels like back labour) to the last few months nearly constant pain. And it’s exhausting. I have very little capacity to be nice, I am always on the brink of rage, because that’s my response to pain, I guess? I’m 42, I did have an ultrasound and my doctor suspects I have endometriosis, something about a cyst on an ovary and going back in a few weeks for another ultrasound. I also have celiac and although completely GF my body keeps acting like it’s reacting to something. I am not ok, but I’m a single mom and have to BE ok, and if I can figure how to get rid of the pain then maybe I can be ok and be nice again? Is it possible? Or am I doomed to being on the edge of rage forever? I feel like such an asshole I’m having the hardest time being even remotely nice to people I care about and I hate it. I live in sask Canada and while I have a good doctor the wait to see specialist or get treatment can be…. I might die before I get help (can you die from endometriosis because I feel like possibly yes) also probably peri menopause too, I just eat to be myself again and have capacity to manage things the way I always have but this PAIN and I don’t want pain meds I just want it to go away
I (32F) had suspected I had endometriosis for a long time. Likely started when I was 16 years old and have been on various forms of birth control ever since.
I had my lap done today and they found extensive endometriosis and also removed a few cysts. The relief this news gave me was enormous. For years I had complained to every doctor that I had about my periods until the pain became almost daily. I finally had enough and started advocating for myself more. The first gynecologist completely dismissed everything I experienced and kept telling me that my problems were "not gyne related". I asked for a different referral and thankfully this doctor actually listened.
I am thankful for this sub as it has helped me validate the pain and symptoms I have experienced. Don't be afraid to advocate for yourself for this very poorly understood disease. There is hope.
Hello! So I recently went in to get an IUD and read all about these horrific horror stories about how badly they hurt, so I was kind of primed for some really bad pain. And well, the insertion failed but that's another issue entirely, but the pain was nowhere near my monthly period cramps. It hurt for sure but it was so extremely mild in comparison.
I've always had the sneaking suspicion that my period cramps (and flow honestly) weren't normal (but I also went to class and presented a topic while my appendix was bursting so I have a very skewed sense of pain) and that it could be linked to endometriosis, but haven't discussed it with my doctor for fear of getting completely dismissed if I don't bring something very solid to prompt testing and investigating.
But- is this something I can use to get that ball rolling? Like is telling my doctor that a (albeit failed) IUD hurt leagues less than the cramps I get on a monthly basis something that will get me taken seriously?
hello!
i want to ask about the criteria/diagnostic process/how anyone here learned they had endometriosis.
for context, i'm a minor, and i've always dealt with irregular periods and heavy bleeding (oddly enough, i haven't missed a period yet this year). i'll go through anywhere between 5-10 of those overnight period pads in a day and still manage to leak. it feels like i cant focus on anything but the pain and the cramps get so bad that i have to lie completely still in bed and wait for it to pass. my insides always feel raw (like peeling a potato). for a while, it felt like the pain would radiate up my chest, but after almost a year, the pain felt more centered around my pelvic area. lately, the pain has spread to my knee joints (i get achy stabbing pains), and it feels like nothing works anymore, not my heating pad, not dark chocolate, not even OTC pain medication (which i barely ever use! i shouldn't have a tolerance, should i?). basically, everything feels stabby and achy and terrible, sometimes even when im not on my period. i've talked to friends about my experiences, and they've told me that it doesn't seem normal; they've talked to me about their parents with PCOS/endo since what i deal with sounds.
i know that maybe things will even out when my body is done developing, but how did you find that you had endo? how did you know something was wrong? am i just worrying too much? what if i am?
I dont know what stage endo I have, but 9 months ago, i had a laproscopic surgery where they removed the endo on my left flank, right flank, and culdesac. My surgeon recommended I get a mirena inserted during surgery because most of his patients go into remission with that birth control. But after surgery and the initial recovery, i didn't feel much better. my abdominal pain improved, but I had persistent cervical pain and intense dryness and a slew of other symptoms. I found a new specialist, and she said it's been 9 months, and you're miserable. This should have been taken out when you were six months post-op. She had a completely different response to my old gyno who told me he "doesnt get paid by Bayer to tell you to keep it in" and that "IUDs don't cause side effect the medicine is only in the uterus".
My new doctor took it out, and even though it hurt so badly coming out now that it's out, i feel so much better. Its been 7 hours, and even though I'm a little sore, I can kinda relate to other posts when people comment about how they immediately felt better post-op.The best way i can describe the feeling is like having a pebble being taken out of your shoe. This new doctor also ordered a full hormone panel to determine which birth control I should try next. I'm feeling a little hopeful with this new provider because I feel like she's understanding that sometimes treatments fail and not everything works for everyone. 🤞fingers crossed this new birth control she recommends during my next appointment will work for me.
Also, I'd like to give a general thanks to the people of this group that recommended me pelvic floor therapy that has also helped with my surgical scars. Hopefully, I'll continue to have more progress with internal work since my IUD is out.
I had a lap, a sterilization, and an iud placed back in March 2025, and since then I feel like my symptoms have gotten way worse. I have been going through a nonstop flare up for months that just won't quit. they removed some endo, but they told me that over all everything looks okay. I even talked to my gyno in January and she said it takes 2 years for endo to grow back but I've heard otherwise. I actually have a surgery consult on monday to see if I qualify for a hysterectomy, but I'm not getting my hopes up.
Okay ladies, hear me out 😩
I’m 31 now. Diagnosed a few months ago with endo.
At ages 14-19, I couldn’t use a tampon because it hurt too much going in/was wayyy too tight down there! I also couldn’t have sex until I was 20 bc of the same reason.
I was only able to start having sex after I deliberately sought out a “less endowed” partner to “break the seal” 😩
Fortunately it worked, and I was able go through my 20s having intercourse and using tampons. Yes, deep penetration did hurt, but I felt like I had ‘solved’ my problem.
Now flash forward, at age 30 I start my celibacy journey. About 11 months in (6 months ago) I suddenly get the tightening again. No more tampons 😩 my vagina is back to how tight it was ages 14-19
Even feeling arousal down there or masturbation really really hurts 😩
Does anyone relate to this? 😢
Does anyone with thoracic endo experience a crackling in the chest, like almost as if there's bubbles in your lung?
And what other symptoms do you experience?
I suspect I have thoracic endo, cus every month during my period I get chest pain, and I can't really lay on my side, I can't put my legs up because it feels like I can't breathe that well, and when I lean forward it feels like there's a crackling in my chest.
Hi everyone,
Looking for similar experiences or insight.
I’ve never had normal periods and have been diagnosed with PCOS. I’ve been on the birth control pill for about 17 years. Despite that, I’ve always had heavy bleeding (needing night pads and going through 4–8 per day depending on the day), along with chronic back and pelvic pain, fatigue, and bloating.
Over the last couple of years, I’ve also had intermittent right-sided pelvic pain. Ultrasounds have always come back normal.
In the last 18 months, things have gradually worsened. Especially fatigue, headaches, and diarrhoea around flares. But the last 6 weeks have been the worst.
I now have severe, constant lower back pain that hasn’t improved at all with physio, and over the last 2 weeks I’ve also developed significant pelvic pain. The pain is a constant dull, burning ache in my lower back, pelvis, and glutes (mostly right-sided). Heat and pain meds don’t really help.
It’s gotten so bad I’ve been in tears. My GP is currently considering endometriosis, but I’m also waiting on a lumbar spine MRI to rule out back/nerve issues.
Has anyone experienced anything similar or had a similar overlap of symptoms (PCOS + possible endo or spinal issues)? I’m trying to understand what else this could be or what helped you get answers.
I had to go to the hospital yesterday for intense lower abdominal pain on my left side, the ultrasound showed that I have an 11.5 cm cyst that is suspected to be an endometrioma. I have no previous history with irregular or overly painful periods so I’m so confused on how I have endometriosis.
All of this started about two months ago after I took a plan b pill. I went to my primary doctor about three weeks after taking the pill because I thought I had a bladder infection. They treated me for one and the antibiotics helped, after finishing the round they told me the culture was negative for a bladder infection and said I don’t need to come in for imaging unless the symptoms come back.
(I still haven’t gotten my period since taking the Plan B and I am normally extremely regular)
Yesterday the symptoms came back and it was unbearable. I’m wondering if there’s anyway it could be a hemorrhagic cyst that was mistaken for an endometrioma? Or if the Plan B could’ve caused rapid growth of a pre-existing endometrioma? I didn’t get many answers at the hospital. They told me they didn’t recommend surgery because it’s likely to come back, and pretty much only offered me bupropion and referred me to a specialist that I won’t see for another month. I’m in so much pain and discomfort I’m so confused and don’t know what to do.
Hi ladies, (fellow endo and adeno sufferer here!) I’m in the process of building a women focused healthapp and would love some user feedback if possible - as looking to make it as helpful and tailored around adeno/endo/pcos sufferers. Let me know if you’re interested and I’ll DM you the details. App contains - extensive whole body symptom tracking plus community forums with local practitioner directories. Thx!
I have so many symptoms that are just making my life so difficult. I don't have insurance and can't afford surgery. I have other health issues that have made it hard for me to work. Honestly just feel like this disease is eating my insides and there isn't a thing I can do about it. I also have a dermoid cyst, fibroids, and a suspected fistula. I am so tired of living this way.
Hi, I am wondering what the general consensus is on multivitamins. I am taking a lot of things for deficiencies (iron + vit c, b12, folate, d3 + k2, magnesium) and then also omega 3. That’s already quite a lot. But my diet is not the best right now for a lot of reasons (mental health, intolerances, medications etc.) and so I’m particularly worried about not getting enough zinc, calcium, iodine and other b vitamins. My overall health is struggling at the moment and I need to get on top of it, but I keep hearing that with chronic illnesses often multi vitamins can do more harm and a targeted approach may be better but I’m getting tired of taking so many things and trying to figure out the formats and dosages I need.
Does anyone take a multi, even if it’s only a few times a week, and find it useful?
I live in canada ontario btw. I know this sounds really extreme but in my situation it’s really not. I have stage four endometriosis and it’s never getting better even with surgery. I don’t have a network of friends and family. I have nobody to look after me I’m pretty much bedridden and it’s been horrible. I only got diagnosed properly like four years ago and before that they had gaslit me into thinking it was all mental illness, so I was focussing on my mental health instead of on a real disease because I thought all of these horrible symptoms were in my head, including not being able to eat without feeling extremely nauseous, but it turns out it’s because it’s all over my intestines.
At this point, I’m just suffering and I’m never going to be my old self ever again my doctors have me on zero pain management and I’m so tired of fighting with them. I feel so much pain and nausea on the daily. I pretty much feel my colon stuck to my abdomen my belly looks pregnant and still no doctor wants to do anything about it. Can anyone tell me how I should go about asking for maid and if I will get approved? That information would be really helpful. It’s either I choose to die with my dignity, intact or I keep having bowel blockages until one does me in.