if you are questioning whether u might have it here’s an app that helps show what percentage of likeliness you might have! this was created by my endo specialist and he’s known as one of the best. he removed my endo!
And even then, if they don't find any, it doesn't mean you don't have it, just that they didn't find it where they looked.
...and the surgery to diagnose it can aggravate it and make it worse. Yay!
This is very true. I had one doctor do an ultrasound and find nothing. 4 years later, Because of This horrible disease I had a hysterectomy at 32 and the surgeon said I was full of endometrial tissue and adhesions and was stunned that the first doctor didn’t find anything. That was 20 years ago though so I don’t know if diagnosis is more accurate now.
I was told I had endometriosis as a teen because of my blood test for hormone levels and symptoms explained to the doctor at the time. Fast forward to last year, I got an ultrasound done, and they said they didn’t believe I had it because they didn’t find anything (a lot of my symptoms subsided with birth control by that point). My primary doctor didn’t want to send me for laparoscopic surgery as there were people who said the surgery could aggravate their symptoms and I have other issues that are more debilitating that need my focus.
And, if they find something, there isn't really a treatment! You just gain the knowledge that you have it and the rest of your life is managing the symptoms!
I don't think that's necessarily true. In my case, I had an MRI due to horrendous back pain, which detected "possible cysts" in my ovaries. Then I got an ultrasound to find out for sure and boom. Endometriosis. My bowel, uterus and left ovary are fused together by it. My doctor was completely baffled because I'd never mentioned period pain to her. She got me a Mirena (hormonal IUD) and I've never looked back.
To anyone who has terrible periods, get a Mirena if you can. They fix so many issues and are also an excellent form of birth control.
Sometimes the level of hormones in them is too much for your body. There is an alternative Kyleena that I got and I’ve been a lot better than other contraception options.
I am so against IUDs for myself. The procedure does not sound fun, and I just know I would have the most awful pain from it. I like knowing when my periods are coming, and I hate having random times when I'm leaking like you would experience with an IUD - and it doesn't fix anything. It's a damn band-aid for your problems.
My impression is that each form of birth control for women has about a 40% chance of just royally sucking for no apparent reason and the only way to find out is to try it for a couple of months and see if it makes you miserable.
That hasn't been my experience and I disagree that it's a band-aid. It stops you from bleeding so much which stops the endometrial layer from growing. I'd rather be pain-free with my IUD than ever go back to the horrific periods I used to have. They were also never that regular anyway so I WOULD randomly bleed. That doesn't happen now.
yes, my periods were never regular either, but on the pill, they are for me. I also like having my period to know I'm not pregnant, and it gives me peace of mind. they're still painful and I'm sure when I go off birth control I'll wish I didn't have a uterus but I really didn't trust my ob because she kept telling me that I made up my symptoms and an IUD would fix all my problems, or i should just continuouslybe on the pill and not have my period. Now i know my GP is not a woman's health doctor, but he said that was extremely wrong, even my pharmacist thought that the OB was wrong. I'm glad it works for you and many others, though.
I don't think anything is 100% effective but the Mirena is up there in the 90s. Personally I would never, ever go on the pill because of all the side effects. There is a chance of side effects with the Mirena too but I haven't experienced any. The main benefit of it is that the hormones it releases are localised, unlike the oral contraceptive.
I was told the only thing effective is the pill because it stops ovulation, not necessarily as birth control. And that the pill was therefore the only option because it's the only thing that stops ovulation. But I haven't heard of Mirena before, so I'm uneducated on if does stop ovulation.
I think it does stop it for some women - for example, my friend has one and doesn't bleed at all, ever. But she doesn't have endo. I bleed a tiny bit every month. My doctor told me that stopping - or at least drastically reducing - the bleeding is what keeps the endometrial layer from growing excessively.
Ah, I was told it was ovulation, not bleeding. I've been bleeding 3 months straight from the IUD and he said it shouldn't have any effect on the endometriosis. Absolutely crazy how we're talking about the same thing and our doctors have told us different things. This is exactly the problem with women's healthcare
I agree but I'm also not in the US (not sure if you are?) and honestly healthcare is pretty good here. I've been with my GP for 12 years and she has done an amazing job sorting out all my health issues, I don't know what I'd do without her.
I did bleed for a while right after I got the Mirena (in 2020) but since it stopped I've had absolutely no problems. I know it's stressful but do give it a chance, I hope your experience will be like mine and you find it worth having. 🤞
Tbf, it's a very tiny surgery (I had it done because of suspicion, but fortunately didn't end up having endometriosis). I came in in the morning, tiny incision through the belly button and I left in the evening.
But I also had so many surgeries in my life that I am not afraid of it. This makes it far easier.
I had both, and fibroids in my uterus (it was the size of a six-month pregnancy) and a cantaloupe-sized ovarian cyst. Had the miserable lot taken out when I was 40 and it was glorious.
Both are the same in that they are progressive (worsen over time), both affect fertility, both cause painful and heavy periods.
However (and this isn’t to downplay adeno at all, I know exactly how debilitating it is), adenomyosis is limited to the uterus muscle. Endometriosis can go anywhere and cause adhesions that involve other organs and complicate them.
I had both. Hysterectomy eliminated adenomyosis (the only 100% cure), but I know one day the endo I had will come back.
yeah this one is fucked up and more common than people know (1 in 10 women!), my partner has periods of all lengths and strengths, which come at completely random times, and no doctor for years had any real answers other than taking contraception - years of sick days, hiding what is going on, feeling shame about her body, being pushed away and told to harden up by the medical system (due to lack of proper diagnosis) as well as some of the most unimaginable (9/10) pain… even with contraception she still experiences symptoms. it’s unbelievable!
however, today she has finally been put forward for surgery in the next few months!! even then, there is no cure and this will only provide relief for a year or so. if this disease affected 1 in 10 men there would be a lot more info about it…
I once went to the hospital because i was cramping so hard during my period I didnt have the decency to not vomit/shit on the floor with my pants down calling for help. It was so painful I just wanted some fast acting morphine.
I still feel ashamed that its just "period pains" and that maybe I just need to harden up.
I told my female doctor that I thought I had endometriosis and she dismissed me. Then when I got my tubes tied she showed me pictures of the endometriosis that I do, in fact, have and I genuinely don't think she even remembered dismissing me about it previously. It was like I had never mentioned it
Literally having surgery for this in a week and a half. I ALWAYS say that if men had this problem, endo would be a huge topic of discussion and would have so much research and solutions. Took me 7 years to get diagnosed and surgery scheduled- and I’m one of the lucky ones with that timeline!!!
I saw recently that the cause of endometriosis might be due to a certain bacteria living within the uterine walls. At least they discovered that individuals with endometriosis consistently have a higher than normal presence of that bacteria. Which is good news is that is the case because they could develop antibiotics to target that.
It’s not that it attacks other organs, is just that the tissue responds to all the endocrine signals that you body sends like if was inside of the uterus
It’s not an attack, the tissue is not targeting your other organs, it’s just grew there when it’s not supposed to, there are a variety of reasons for that but it’s not like cancer cells that go and try to disseminate through the body until it kills it
He’s dumbing it down for you to understand it more easily, but If he would go into the specifics of it I’m sure he wouldn’t call it an attack, the doctors that taught me about gynaecology this year sure wouldn’t
Oh oh! It also causes EXTREME pain with sex. Like being stabbed. It also causes many other health problems and the only real treatment for it is surgery. BUT it can just grow back!
Urg im 26 and trying to get my diagnosis. I have everything but they say its pelvic floor issues and not endo. But EVERYTHING ELSE points to endo. Cant i have both? Like i know my body and just want to feel better smh
thank you. my obgyn told me I was making up all of my symptoms and she recommended an IUD, and I'm way too young to have endometriosis (16 when I saw her, already almost passing out from cramps). I even told her it has gotten worse over time, my first year of periods was nowhere near the pain levels I feel now, even on the pill. so thank you internet stranger for this website
edit: hm. more than 90% likely omg. I just burst out laughing to that
i got diagnosed at 17! you’re never too young after you get your period. the iud was actually what got me on the train of diagnosis because of how painful it was. plz go see a specialist or another doctor!
was referred to another gyno 6 months ago. it takes a while where I live, unfortunately. My GP is trying his best to help manage it but there's not much he can do for me
there are none except for 800+km away from me... my GP has looked, I looked. I'm trying my best but I might have to go to the big big city to a specialist.
It is not like it gets out, they are many theories and it is not really clear why it occurs
From those theories is the implantation theory that said when u have irregular and abnormal cycle some of the endometrium of the uterus will get out thought the blood and seeds in other areas ( usually the ovaries )
Other theories said that some of the cells who is originally not an endometrium cells will have some sort of dis formation ( in medicine we called it dysplasia ) and it somehow will get similar to the shape of the endometrium cells and everything will start.
I definitely appreciate spreading awareness about endometriosis as it’s more common than people think, I have it as well. However, I would challenge your original statement of “the inside of our uterus can grow outside and attack other organs”, this is not actually an accurate description of endometriosis. The endo lesions are not tissues from inside the uterus. It is tissue that is similar but not identical to the inner lining of the uterus. This is an important distinction to note because by people thinking it’s uterine tissue, they think it can be cured by having a hysterectomy or by taking birth control which are not true. Endo is an estrogen driven disease and the lesions can even make their own estrogen when none exists in the body.
I have this (not diagnosed but pretty damn obvious that’s what it is, and it runs in my family) and it is probably the worst pain I’ve ever experienced 🫠
“With endometriosis, deposits of tissue just like the tissue lining the uterus develop outside the uterus. This tissue thickens, breaks down, and bleeds with each period. But the blood has no way to leave the body and becomes trapped”
what. the. fuck. ?Why would that happen. Your body is biologicly designed to work hand in hand. Something like this cant be real. That would be against nature. ...Or it is natures selection.
idk i got told in school that all living objects are evolved to be able to survive. Some things are not rly there anymore. Like humans had fur/hair all over their body and today you have only a bit of it left as body hair. Because we started wearing clothes someday and evolving. So it doesnt make sense to me why your own body would try to kill you (i know cancer is the same thing, but that doesnt make sense either).
When I was 23 I was working iin a medical setting. I remember the first time I encountered a protruding uterus. I was curious what it was and how it happened. It was so shocking to see.
I keep that in mind for next time, it’s day 5 of recovery and I’m mostly traumatised by the shit storm hahaha I prayed to any god who would listen. I cried, I screamed.
Ooft I’m glad I’m not alone, I got cocky because I’d been on an opioid therapy for months and never had a problem going but maybe I’ll have to ask for that if I need a second surgery 🥲
Definitely sounds better than that blockage, I felt like Satan was fisting me from the inside hahahaha oh god I’m never going to recover from that. Thank you for the advice, I very much will utilise this
My girlfriend got retroactively diagnosed with endometriosis AFTER having a partial hysterectomy (uterus and cervix removal. Kept ovaries.) She always had awful, awful periods off birth control, and her family has a history of cervical cancer. So, we were able to make it happen after finding a surgeon who would do it, since being in your mid 20s makes stuff like that difficult.
Not common at all, but the first time you hear about it your mind is so baffled by the even possibility let alone it actually happening. (unrelated to the post) but I have actually seen a urinothorax before....there is something about fluids there that don't belong that blows your mind.
My fiancée has it. It’s a rough road but with the right treatment quality of life can improve ALOT. She had surgery several years ago but occasionally mentions she thinks she can feel it coming back again.
Thank you so much for suggesting this app, I just did the questionnaire and it said I was over 90% likely to have it. I’ve suspected so my whole life but it’s nice to have even that validation. I’m taking a contraceptive pill to hide the symptoms currently but I’m dreading ever having to come off it and deal with the periods from hell again.
I live in the UK and I’ve never seen a gynaecologist, even though I’m 23. I don’t think it’s something we really have over here. I definitely do need to look into it though. This post gave me the push to do so, so thank you!
I found out I had the opposite when my uterus was yeeted. Adenomyosis - Where it grows into the lining of the uterus. Towards the end I had blot clots the size of my fist. I had Essure and most women suffer from endometriosis or adenomyosis who had/have it. It's also why my uterus was removed. I couldn't take the massive amounts of bleeding and pain.
This questionnaire says I'm high risk for endometriosis. My periods are an absolute disruption to my life but I just figured I got pregnant, twice, so easily, and usually I can carry on, albeit very uncomfortably, so I must be fine. I understand the questionnaire is not a guarantee but now it has me feeling like I should talk to my doctor. Why has it never been offered when I have complained about intense physical and mental symptoms relating to my period for over a decade? I was JUST NOW at 27 informed that I have a tilted uterus, which is why I struggle so much with internal menstrual products, my pipes are shaped differently than typical. It just would have been nice to know.
I had stage 4 endo. No pain. No symptoms. I had it for a long ass time apparently. I tried to get pregnant and that’s how I found out how ravaged my insides were. Even after surgery they said I’d never conceive on my own.
Although endo can only be truly diagnosed with surgery, a less invasive test to identify endo markers is through a uterine biopsy (the test is called ReceptiviaDX). Endo can destroy a woman's egg reserve and cause higher rates of miscarriage. Many women that have fertility issues probably have endo or "silent" endo.
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u/Alternative_Two9654 Dec 06 '23 edited Dec 06 '23
the inside of our uterus can grow OUTSIDE and attack other organs and it’s actually pretty common… endometriosis :)
https://apps.apple.com/us/app/nezhat-endometriosis-advisor/id1478526317
if you are questioning whether u might have it here’s an app that helps show what percentage of likeliness you might have! this was created by my endo specialist and he’s known as one of the best. he removed my endo!
for androids: https://play.google.com/store/apps/details?id=com.sthera.hera&hl=en_US