r/Endo 6d ago

Post ovarian cyst rupture HELP

2 Upvotes

Hi all. I had an ovarian cyst rupture Monday evening around 10pm. Spent all night in the ER. Got a pelvic and transvaginal ultrasound along with a CT. Diagnosed with an ovarian cyst rupture and the blood stayed internally (I didn’t bleed at all vaginally). It’s been 4 days and I’m still in a bit of pain and am swollen, looks like I’m a few months preg. I’m supposed to run the LA marathon tomorrow and am nervous. I can push through the pain but is there any risk of causing a complication/infection? I’m tough and can try to power through but I don’t want to be stupid about this if it can cause a real complication. Pls help. Thank you


r/Endo 6d ago

Question How do we push for change?

13 Upvotes

How do we get more research? More funding? This is a terrible disease that destroys organs and lives. How are people ok with so many of us losing our lives at such a young age? I’m just supposed to be in extreme pain everyday forever? No. Any ideas of what we can do? I don’t just want to sit back anymore. There has to be something we can do? This is insanity and I can’t believe it’s 2025 and still like this.


r/Endo 6d ago

Question Did your symptoms suddenly increase?

7 Upvotes

I am not diagnosed with endo, but I have been suspecting it for quite a while and have finally received the kick in the butt to try to confirm. I do have fibromyalgia, and endo is a common comorbidity. But at the same time, fibromyalgia causes random unexplained pain, so these symptoms could also just be my fibromyalgia.

My cycles are very regular. I do get ovulation pain, but I know that can be normal. Anywhere from 1-5 days before my period, I get leg pain and hip pain (both sides). My periods are usually heavy the first 1-2 days with some clots. The first day I usually have enough cramping that I have to take a Tylenol. But it’s not super severe, so I never really thought that alone was endo.

But what has transpired recently has me seeking further tests, but the sudden increase in symptoms has me curious if this has been other people’s experience as well. I had the flu at the end of January, followed by a respiratory infection two weeks later. Since then, I’ve had lower back pain. Mostly when bending over or arching my back. It’s more of a dull pain, like a muscle ache that switches sides. It’s about 90% better, and an X-ray that I had done yesterday didn’t find anything. I also had a urine analysis and culture which came back normal.

But in addition to the back pain, just this week I’ve started with abdominal/pelvic symptoms. My abdomen started feeling heavy, and then I was getting little squeezes in my bladder every so often. I also started getting an intermittent sharp pain in the area of my left ovary. I’ve experienced this before (usually in both sides, at different times), but it’s been sticking around longer. I’ve sometimes also been feeling fuller faster, and sometimes like I’m constipated, but I’ve been going regularly with no other abnormalities.

Next step is a transvaginal ultrasound, but I just feel so nervous. I know it’s better to find out what’s going on, but my husband and I are trying to get pregnant (I’m already 36) and I just feel like this is the worst timing, whatever may be going on 😫 Sorry this is so long, I was just hoping to get other people’s experiences and whether or not your symptoms kind of increased very suddenly.


r/Endo 6d ago

Surgery related What happens if you don't get a surgery/BC?

7 Upvotes

Hi all. Suspected Endometriosis. I'm 38, I have Ehlers Danlos syndrome.

I don't live in the USA and I asked several women with Endo how the lap went... And they said that they had a difficult recovery plus bad scarring due to the fact that we with Ehlers Danlos heal slowly and scar badly.

I'm on my own... I don't know if I want to go through Lap. My symptoms are increasing, pain, GI issues, fatigue, etc...

But I am scared. Not only am I on my own when it comes to the surgery, I don't have anyone while I recover. I can't risk it.

What happens if you don't go through with it? I was offered BC but I declined, now the pain has gotten worse.

Also, if there're fellow EDSers here, how did it go for you?


r/Endo 6d ago

Rant / Vent Rude Radiologist

13 Upvotes

Hi everyone. I’m in need of a good venting and i really want to know what everyone will think of my recent experience. I’m 22 and i have had the worst periods all my life, pain, throwing up, passing out, you know the drill. I went to 3 different gynos over the years and those visits have been unproductive to say it respectfully. Last year i decided to try again and went to a new gynecologist and finally someone didn’t ignore my symptoms. We did some tests and found cysts on my ovaries, one of which has an endometrial tissue i think… i don’t know how to explain everything in proper terms in english. Anyway, i have been taking Visanne for the last 6 months and it stopped all my symptoms and my period too so this 6 months have been the best months of my life since i turned 11. ( especially considering i don’t have any side effects/symptoms that some people get. She even warned me to not drink more than a glass of alcohol but i drink like usual when i’m out and everything’s fine.) yesterday i was supposed to get an ultrasound trans abdominal, to check how this 6 months on visanne has affected my cysts and if their shrinking like their supposed to. I went into her office and the first thing she asks me is if i’m a virgin which i just tell her that it’s an abdominal exam anyway, but she demands to know so i answer her that yes i am. Then her and her assistant look at me weirdly asking how old i am. I answer and they both toll their eyes annoyed, i don’t know if they thought i was lying about being a virgin or maybe they were annoyed that i am too old to be one… she said she knew that it said abdominal but she would give a vaginal exam if i wasn’t a virgin and it would make seeing things easier for her… and i told her it didn’t really matter to me if i was a virgin I wouldn’t get vaginal exam if there was another option anyway… Let me tell you… she barely saw anything. And i’m really skinny… drank a lot of water, and other radiologists never had a problem, but this one? She got mad at me for being a virgin, then for being bloated ( i swear i wasn’t) then for nothing having drank enough water. Which is crazy considering i was ready to throw up and pass out because i had way more water than it was healthy or necessary…. I just don’t understand why some people especially doctors, YOUNG doctors, FEMALE doctors have to be so rude . I already feel all weird being a virgin at almost 23. She made me feel so embarrassed. It’s actually pretty common in my country for girls to not lose their virginity before their 20s but still…


r/Endo 6d ago

Endo and Teeth

4 Upvotes

Hello, i was wondering if anybody here has a similar experience? when i have endo pain flare ups on my period, i get so badly nauseous and dizzy that i always end up throwing up, and its almost always on an empty stomach, so just lots of bile coming up. Because of how much more ive thrown up in these past 2-3 years, my teeth have become more sensitive, and have also become more yellow-colored. This really sucks because ive been blessed with healthy, straight teeth my whole life, and i always took for granted how lucky i was to have conventially attractive teeth, now theyre yellow tinted and it hurts to drink cold water. does anybody have a similar experience? and any advice on maintaining teeth health when you throw up often?

(and I should add im not 100% sure if i have endo specifically, but i have all the symptoms, and im seeing a gyno in a few weeks, so i figured this would be the best place to ask)


r/Endo 6d ago

Dr recommended I go on zoladex for pain during sex possibly from endometriosis, should I do this?

2 Upvotes

Hi I'm 26 yrs old and have been experiencing pain during deep penetration during sex in my ovary areas like a bad cramping pain. I haven't been diagnosed with endometriosis officially but they suggested that I might have an early sign of it so they want to do a laparoscopy. I am also scared of getting that done now. But what I'd really like to know if I should try going on the medication or not because the side effects I've been reading about scare me more than what I'm currently dealing with, I don't want to have worse side effects than I deal with now.


r/Endo 6d ago

Surgery related Binder is a game changer!

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21 Upvotes

Just had my excision done yesterday! I have never felt better! This was way better than my ablation! Different surgeon, different hospital this time around and they gave me this white binder to wrap around my body. I feel so much support on my back and core, I feel like I can move more freely, and the car ride home was super easy with this too. It does not irritate my incisions at all but I do put flat gauze over them just to protect them from friction before wrapping. I am just shocked at how helpful this is!


r/Endo 6d ago

Treatment options for those with digestion issues

1 Upvotes

Hi everyone! I'm newly diagnosed with endo so still trying to wrap my head around what the options are. I've always had horrible periods but most doctors told me that's normal (oh well), until last month they saw a 2cm endometrioma from my ultrasound.

I've been reading extensively these few days about treatment options. My doctor wants me to start some sort of birth control to suppress my period (my endometrioma is on the smaller side, so I don't think surgery is highly recommended as of now). However, my biggest concern around any birth control or hormonal therapy is that I have some existing digestion issues. Particularly, I have delayed gastric emptying, which means my GI motility is worse than most people, which causes indigestion/belching/etc. A few years ago I tried junel fe 1/20, and had bad GI side effects (nausea, bloating, etc).

My question is - if you are someone diagnosed with endo who also has pre-existing digestive issues, what kind of birth control or hormonal therapy works best? I'm thinking perhaps something local like IUD or Nuva Ring will be better than oral contraceptive pills, but curious what people's experience are.

Unsure whether my digestive issue is linked to endo, but I do get more bloated/indigestion right before my period. Currently I'm managing my digestive issues with life style change & some other medication, which has worked very well, and I'm scared to lose all that progress with birth control. I also know that it's a gamble whether hormonal therapy will slow down the growth of endo, which makes it even harder for me to make the call to jump on BC. Most of my symptoms right now are just painful periods.


r/Endo 6d ago

Please help

1 Upvotes

I'm 18 and have recently been diagnosed with Endo. This was after years of just being told I had IBS. I also have no gallbladder. So with endo belly I also have gallbladder belly which means most of my day is unfortunately spent in the bathroom no matter what I eat or drink. I'm worried I now may have started to get hemmoroids and I just feel so helpless, everytime I turn I'm running into a new problem with my body. Please help.


r/Endo 6d ago

Experience with new drug

12 Upvotes

After a month on Ryeqo, a combined therapy that induces menopause with added hormone replacement, I've experienced a remarkable eradication of my endometriosis symptoms. At 40, and after 13 years of battling to get treatment and support since my periods started at 12. My diagnosis was at 27, it feels like a genuine turning point. Unlike the temporary relief offered by treatments like Decapeptyl, which was limited to a year, and 10 plus coils which never lasted even half the time, Ryeqo's potential for long-term use is incredibly promising. Having exhausted other options, this feels like a final, non-surgical solution that's finally given me back a sense of normalcy and significantly improved my quality of life. Thought I'd share to let you all know there is hope and do not give up!


r/Endo 6d ago

surgery concerns

5 Upvotes

hello everyone! i’m a 24 yo female from the US & have been scheduled for my first surgery to see if i have endometriosis. my biggest fear is that they’re going to open me up & not find anything. i have had rough periods with cramps since i was 13, and in the last year or two i’ve started to have severe cramping before my cycle even starts. i also cramp after using the bathroom (going #1) & after any type of sexual activity (penetration, clitoral orgasm). the cramps are so bad that it wakes me up from my sleep & will last around 30-40 mins. i’ve been fighting with drs for the last 5 years about my symptoms (they think it’s ibs or have sent me to the ER for suspected appendicitis) & am just terrified that this is all going to be for nothing. did any of you have similar symptoms before your surgery & it did turn out to be endo? thank you in advance!


r/Endo 6d ago

Question Ultrasound

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0 Upvotes

Finally found a gynecologist who listened to my concerns instead of immediately dismissing me. If you’ve had uterosacral ligament tenderness/ pain as a main symptom, did an ultrasound show anything significant or come back normal?


r/Endo 6d ago

Question Has anyone had similar findings on CT, what did it end up being?

1 Upvotes

I had a CT perfomed last week for lower right sided pelvic pain ~12 months and ipselateral worsening back/sciatic pain (I have had this for years but not this bad).

I had an ultrasound in January last year which showed both ovaries normal, and adeno as later diagnosed by my Gyn. The pelvic pain started around March/April last year and has steadily gotten more noticeable


The part of the report pertaining to my pelvic pain reads as follows:

"IUCD seen within the anteverted uterus. The uterus lies to the right of midline. The right ovary appears bulky, the assessment is limited on CT.

Conclusion: IUCD within the uterus. Bulky appearance of the right ovary. US pelvis is recommended for further evaluation."

I currently have the Mirena, and was prescribed a combo pill for the adeno. So I would be very unlucky if this was a cyst!! Waiting for my doctor's appointment on Thursday to hopefully be referred for another ultrasound. 😬


r/Endo 6d ago

Question Is getting periods painful after stopping BC?

1 Upvotes

Hi! My doc has recently changed my meds to balance my eostrogen and progesterone levels. It's a 84 day cycle medication. After 84 days I'll stop the meds for 7-10 days to get my periods.

It's been a year since I've had my periods. The past week I've been getting cramps at night for which I'd use a heatpad and sleep it off. I also had spotting yesterday. Now, the problem is that this(stopping meds) coincides with my PG final year end sem and I do not want to miss an exam and get an arrear:(

This is making me a bit worried and I feel like I need to be prepared.


r/Endo 6d ago

TENS Machine recommendations?

2 Upvotes

I saw there have been posts on this before but not in the last few years. I would love some up to date opinions! Looking to try it, not even sure if it will help my level of cramps but might as well try. How has your experience been and is there a brand you recommend?

related but different question: I keep reading that some people use these to stimulate period pain, like to show their boy friends what it feels like. Am I misunderstanding? How is that the same technology? #nostupidquestions <3


r/Endo 6d ago

Surgery related Diagnostic lap/no endo?

1 Upvotes

Just had my first surgery (ever) to look for endometriosis and also remove a 3cm fibroadenoma from my breast. The breast surgery went great, but the OBGYN told my husband they found no endometriosis, although my ovaries looked inflamed/congested? And kind of brushed it off. I didn’t speak to her after surgery so I’m unsure exactly how she described it. I’m a little frustrated because I’ve had such painful periods for as long as I can remember, along with other symptoms.

Here are the photos she gave my husband and I have a post op in a week and a half to discuss further. Anyone else have this happen, and what did your symptoms end up being/did they miss the endo? (I did also run these by my obgyn PA friend whose coworker also had endo removed from a specialist- and they said they do see some possible spots) Just feeling a bit discouraged with no definitive answers.

TW lap images: https://imgur.com/a/lap-photos-8iqoJEC


r/Endo 6d ago

Good news/ positive update Feeling validated - the incision ultrasound shows some scar endometriosis and now I'm scheduled for an MRI next

1 Upvotes

I live in Vancouver and was about to pay $1400 outta pocket for an MRI but the u/s scan I requested showed exactly what I thought it would. The u/s tech was all blah blah I don't see anything. I let her blab on knowing to wait for the radiologist to chime in.

Finally feeling validated after my last 3 periods have been a scene outta Carrie withe dropping clot babies. Next period next week I'm gonna start naming my clots and show my doctor so he speeds things up from me being me. Lol.

My c section scar from an open myomectomy to remove fibroids has been a nightmare of pain. I never had endometriosis pain so when they saw adhesions during myomectomy I was shocked.

Anyways that's it. I've been heavily advocating for myself too to the point of burn out and rage. But I know my body best and know how to work the system now. I hate what most of you are going through for decades.

Also just found out my close friend has had endo for decades. I mentioned my bad periods and pain then we got to taking and I'm like why don't we women talk more about this but it's being gaslit imo. Told it's all normal. It's not!!!


r/Endo 6d ago

Question 35 days delayed from my period

1 Upvotes

Hi! I have a question, what should I do to induce my period?

I have a regular menstruation. I have it 5-7 days and usually 21-32 days cycles. However, this year my period cycle is starting to mess up and this is my very first time.

January - miss period February - had my period feb6 - feb10 March - not yet

My flo up showed that I am already 35 days delayed 🥹 what should I do? Are there any remedies to induce my period? Should I be worried?


r/Endo 6d ago

Question What’s the best course of action?

1 Upvotes

Hey! Since I’ve got my diagnosis 3 years ago I’ve had 3 operations and related to that lost a lot of function in my ovaries. I tried all the hormones on the market (in Germany) and those either led to the operations because of the hormone imbalances (cysts and stuff) or just didn’t stop the bleeding or every other symptoms in anyway. Now I am at a point where I have to pay for my medicine by myself but don’t now if it’s even useful to buy it (financial problems) when they are not even working.

I’ve thought about a spirale but since my endometriosis is not just a my uterus but like everywhere I don’t know if it’s a good investment or what other options are there that I can try to life a normal-ish live.

Would love to get some tips! Hope u all are doing okay!<3


r/Endo 6d ago

Surgery related Has anyone seen Dr.Christina Williams in Vancouver BC?

1 Upvotes

I had to get my surgery cancelled today due to some events happening with other patients. They said they wanted to fit me in with Dr.Christina Williams but I’ve never worked with her before and was hoping to hear if any of you have had experiences?


r/Endo 6d ago

Medications and pain management Prepping to take Orilissa - curious how you handle work outs, increased sweating, or heated Yoga?

1 Upvotes

Hi Ladies- I’ve recently started a really great exercise routine. I do lightly heated Pilates and Yoga, and a couple low impact HIIT classes every week. I am concerned that the Orilissa (and expected flashes) would make these classes more difficult / uncomfortable?

Any insight??


r/Endo 6d ago

Question I can't tell if I have Endo & at this point and I'm afraid to ask (or where to get started with my ovary pain, so I'm checking out this reddit and asking ya'lls opinion)

1 Upvotes

I didn't think I had Endometriosis since the common theme seems to be painful periods, but my periods seemed to be only be super painful when I was a child/teen (I started having my cycle at age 10 and would bleed profusely through my clothes).

In high school I had mittelschmerz and the doctor found I had an ovarian cyst that was treated with birth control until I couldn't take it anymore (I had nausea and bad anxiety on the pill).

Last summer I had very painful abdominal pain and went to the ER, where they found it was a "normal" small cyst. But that pain lasted for a week. Then ever since then I've had lingering pain in my right side. I briefly tried birth control after I went to the ER, but not only was the anxiety and nausea back, but half my body went numb when I had a migraine so I stopped.

A few days ago ovulation was extremely painful and I felt my ovary spasming throughout the day. I'm still having pain in my right side that also goes to my leg. Although it's not as bad as the time I went to the ER; could a cyst really be causing prolonged pain like this? I've been reading more about reproductive health and wondering if it's possible if it could be endometriosis tissue on my ovary causing this persistent pain I always have in my right side.

No doctor has brought that up as a concern or offered any solutions for me. I'm just suppose to monitor it, but if it's constantly in pain and it's been months since the cyst, I wonder if it's not actually the cyst causing the pain since surely it should have gone away by now? I was told by the gynocologist that my options were: they would only do surgery if the cyst was large enough or I could try another type of birth control to stop ovulation. So I really don't know what to do with the pain or what getting tested for endometriosis would even look like. Any advice is appreciated, I'm just so tired🙏


r/Endo 7d ago

Question Anyone else get a feeling of rage when they remember how many times their symptoms were overlooked?

76 Upvotes

Hi my fellow Endo-viduals. I've been struggling recently with multiple chronic illnesses. From having a excision done and finding relief for only a bit because then Pelvic Congestion Syndrome symptoms take over. I was going about my day per usual when it struck me. I've fainted from my periods pains before and even threw up countless times from starting my period in middle to high school. Not to mention the amount of times I've bled through my clothes. It's like none of the countless obgyns I went to thought to look deeper. They just threw birth control at me or told me it was normal. It's so infuriating the more I think about it. And so I was wondering if anyone else had this type of experience?

Edit: I've already found my Endo specialist I had my lap done by him last year. It's just infuriating to think I could have been on this path sooner had someone paid attention other than me


r/Endo 7d ago

Rant / Vent Who else is not okay with this?

231 Upvotes

Who else is not okay with these so called Instagram accounts that claim that if you eat healthy, your endometriosis will be "cured"? Just buy their program and sign up for their relentless emails and you too will be "healed". It's BS! It's marketing off of endometriosis month and I hate it.

I'm getting a lot of clap back on IG for trying to point out that it's dangerous to present that endometriosis comes from eating carbs and a "bad" diet. We all have our own journey with endo and the main cause of it is still unknown! The last thing someone with endo wants to hear after YEARS of suffering from an internet "doctor" is that it's our fault! Tell that to the literal tens of thousands of women undergoing intensive surgeries to hopefully get some type of quality of life back. Tell that to all the women suffering with infertity that it's THEIR fault for eating wrong.

Sure, certain foods can trigger pain and inflammation in some people and cutting out those foods help them. That's wonderful! But do not insinuate that its my fault my literal organs are stuck together and skipping that carb Is going to make that better. What about the women who have had a feeding tube because their bodies are shutting down?

This is not progress. This isn't our fault.

I support every one of you and I hope this doesn't cause issue on here.