Hi - am looking for anyone else who happens to have this rare condition that the Dr's think I may have.

About a year ago I started presenting as hyperthyroid. I have previously had stage 4 endometriosis with my left tube and ovary out, years ago. I didn't think it was at all connected.

They treated me for hyperthyroidism, even though my labs were weird. I had a wicked high T4 but other labs looked normal, which is not standard for hyperthyroidism. Also all the markers for Graves, Hashimotos, etc. were negative. It was a weird case my Dr's said. I've been on thyroid suppressing meds for a year with no issue.

Flash forward to about 3 weeks ago and I get the flu A, have terribly hyperthyroid symptoms, am I real mess - very sick. In and out of the ER. It's been a nightmare. They run all the tests, and nothing makes sense. Its as if I am hyperthyroid but without the other markers. No one can quite tell what is going on. I met with 3 endos who said it's impossible for me to be hyperthyroid, however my thyroid hormone is sky high.

Based on my notes from last year in a medical diary, and some comments I made recently about heavy cramping - in a crazy turn of events, my Dr. proposes to run other tests to see if I may have a rare occurrence where my endo is actually creating soft tissue tumors in my uterus, that have thyroid cells in them - so essentially I am growing a fake thyroid that is releasing T4 but not the other hormones that a real thyroid does. This sounds CRAZY to me until I read a few papers on this being very rare but happening. My labs all back up this theory very much. I have a high CRP that indicates soft tissue damage, inflammation, etc. Am waiting on an ultrasound appointment to confirm and then off to probably a hysterectomy. I am HOPING this is the outcome, as it would solve all my hyperthyroid related ailments. When I tell you I have felt like I am dying, I am not exaggerating.

Because this is so strange and rare there isn't a lot of info on it anywhere. I'm not 100% sure this is what I have, but it's looking more and more likely, and I'm trying to get as much information as I can. If this happened to you, PLEASE either reply or DM me. I'm really curious to your experience. Will know more when they do the imaging.

I've heard of endo cysts and tumors growing teeth, hair, etc. but never thyroid releasing tumors. Again, not unheard of but rare. I really want to find someone who this has happened to.

I am in my heart of hearts, almost 100% this is what is going on - it just makes too much sense with my symptoms and numbers, but mentally trying not to put all the eggs in a basket, which is why I'm desperate to find someone who maybe had this same experience.

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A "struma ovarii endometriosis tumor" refers to a rare ovarian tumor where a struma ovarii (a type of teratoma composed primarily of thyroid tissue) is found alongside endometriosis, meaning the presence of tissue similar to the lining of the uterus outside of the uterus, often forming cysts within the ovary; essentially, a patient has both a struma ovarii and endometriosis in the same ovary. Key points about struma ovarii and endometriosis:

• **Struma ovarii:**This is a type of ovarian teratoma where the majority of the tumor tissue is made up of thyroid tissue, usually considered benign and often asymptomatic unless it produces excess thyroid hormones causing hyperthyroidism. 

Looking for referrals for pelvic floor PT in Los Angeles, someone who understands/specializes in endo.

Thank you in advance!

(first and foremost, im a trans guy, he/him please) so i very recently realized that i have almost all symptoms of endometriosis, like pain literally everywhere in my pelvic area, trouble with bowels, period pain absolutely insane and super heavy flow, ect ect ect, but im terrified to get a physical exam done, ive never had gyno anything done (i turn 18 in a week, so not too uncommon i think?) and im very scared of the exam, having endometriosis, having to get surgery, or something worse i dont know, im just very worried, if people could give me their experiences or something of the sort, i think thatd help?

I wanted to share my experience and see if anyone has gone through something similar.

I haven’t had my period for four months, so on the third month, I started taking multiple pregnancy tests—some came out positive, while others were negative. Confused, I went to my OB for a check-up. She did a transvaginal ultrasound, but there was no sign of pregnancy, only cysts on both ovaries. Turns out, I have PCOS.

She prescribed me pills, and after finishing the last one, I finally got my period. However, the first day was incredibly painful—so much so that I was crying and had to take pain relievers. Then, out of nowhere, I passed an unusual clot that looked different from what I’ve seen before. It had white circular patterns, which freaked me out. I sent a picture to my OB, and she immediately requested a biopsy.

I went through with it, but while waiting for the results, I made the mistake of Googling. Now I’m worried because I read that menstrual clots aren’t typically used for endometrial biopsy. Has anyone had a similar experience where their menstrual clot was successfully tested? I’d really appreciate any insights.

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I'm having my lap at the end of February and I start back at university 10 days after (this is the start of semester 1 for me). Any advice for handling uni while recovering? What can I expect in terms of ability to do work etc. so I can plan ahead.

I still live at home, and my commute is 25 minutes-ish by bus. I can watch my lectures online, though. Will I be in the space mentally to be able to pay attention to lectures or is there time I should write off?

Thanks so much in advance x

On decapeptyl 3 monthly injections and add back HRT. This is month 4.

It’s highly suspected I have endo & adenomyosis. My symptoms became much worse after my second pregnancy last year - I developed chronic pelvic pain and periods that lasted nearly 2 weeks. I couldn’t leave my house for the first few days as they were so heavy.

Upside of decapeptyl is my chronic (daily) pelvic pain has reduced and my periods have stopped. Downside is mood swings and just feel achey all over and tired.

However, I have stiff, painful hips and feel like my thigh bones are on fire. Every single day so it’s starting to take its toll as it’s making sleep difficulty. Anyone else experience this?

Any other decapeptyl/ chemical menopause side effects? Did they go away when you stopped the injections?

Hey babes! Let's talk beauty! What are your favorite skincare hacks? I'll add a little something to start us off before asking questions.

I get hives from time to time, there for a while I was taking Benadryl every night, because the itching was just that unbearable. I recently stumbled upon a diy body butter recipe on Pinterest (link in comments) and since I started making my own skincream I've noticed a dramatic decrease in skin flare ups. I've also started making my own deodorant, and tiger balm as well. Next I'd like to start making my own face cream.

I'm sure like a lot of folks here, I have very sensitive skin. It's to the point where even the free + clear/ hypoallergenic products cause me to break out in rashes. This is what inspired my latest hyper fixation: diy personal care products. I'm wanting to make something for my face next: I have dry patches on my cheeks close to my nose that appeared shortly after starting Mirena. I also get a lot of cystic acne on my cheeks as well as jawline and blackheads pretty much everywhere. I'm curious to know what oils, salves, diy creams, etc., have been working for you.

Feel free to leave a comment about whatever routine, products, lifestyle adjustments have worked for you, even if it doesn't meet the above specifications, I'm sure there is someone out there who could use the info.

I ask because, after pouring through articles and research about endo returning (and at higher percentage rates with more procedures) despite surgery (and, in a way because of—endo loves inflammation and scar tissue), it just seemed pointless for me to pursue. My pain has not taken me out of work, nor changed my lifestyle too drastically (I no longer play soccer and have more issues with left sciatic leg pain than anything else, and though that’s frustrating it is also much more doable than what I know many on here are experiencing 🙁).

I suppose my concern is having a procedure and making it worse, whether now or down the road.

But I also wonder how bad it can slowly, silently get in there, what’s “the worst” it can do? And, damnit, if I don’t also at least a pinch worry about that smaller possibility—cancer. 😩

I have endometriomas on both ovaries, suspected stage IV. Been tracking them now for about two years. Some concern, based on symptoms/sensations in my body, that endo is tethered to my rectum and to my liver. Body functioning as it should (for now), and diet plus breathing exercises and pelvic floor have helped eliminate liver related pain. I’m 40 and at this point more likely not to have kids, but I also don’t want to enter a medically induced premenopausal state and suffer other health impacts. It just feels so dang impossible to choose what is best for my body and long term health.

Anyway, I would very much appreciate hearing from those who have similarly chosen to avoid/postpone a procedure, and if it’s been a good decision…or if you’ve experienced negative consequences from doing so. Thank you. 🩵

Hello!

For some background - I had my lap done on 12/11/24. I had a hemorrhagic paratubal cyst removed from my right fallopian tube, as well as 12 other lesions.

Both of my periods since surgery were terrible still in terms of pain. But, I’ve developed a couple of new symptoms re: bleeding. 1) spotting before periods (which never used to happen!). I will start bleeding/spotting very lightly (on my expected period day) and then it will completely disappear for 48 hours, and my period will start. And 2) I am experiencing bleeding AFTER my period ends too, this time for quite a while. My periods are long to begin with (typically 8-10 days), but I’m experiencing blood in my cervical mucus / when I wipe. It’s like gloopy/gooey and stringy with dark red or brown blood. I’m on CD17 and it’s still present. It’s not runny blood like a period, but more mucusy. And it appears only when I go to the bathroom and wipe, not really in my underwear or anything. I do notice some small fleshy chunks in the toilet when I stand up.

My doctor said “during surgery, sometimes the uterine lining get disrupted with the manipulator and can cause spotting outside of your period for a couple cycles” and she said to wait one more cycle and then potentially take a 10-day course of progesterone to definitively shed the lining.

Has anyone experienced this happening post Lap? I am also actively TTC so I’m getting a little more concerned than I normally would.

I have a few questions. First off I have not been officially diagnoses. I'm having a scope but in a few months to determine that's. What I do know is every month for the majority of the month I am in pain. They prescribed me Gallifrey. My father picked it up, they didnt give him a consult (PMO). So have any of been on this med? If so how was your experience.

Also what should I be ready for laparoscopic? They told me few things to be aware but honestly, the surgeon was a cis man. So I don't trust him to tell me how women feel after. He already misperceived my stillness during a pap smear for not experiencing pain. I just have a freeze response to pain. He will be putting air into my cavity, going into my bladder, outside the uterus, and inside. So advice is very much needed.

I was diagnosed with endo at 16 and immediately was put on birth control to manage it. I’m now 23. It worked for years, I would only have one period a month instead of 2 or 3, they were only lasting like 6 days, I didn’t have to change a pad every hour, and most importantly I could function when I had cramps.

A couple months ago I had another period about 4 days after the one ended that I was supposed to have. It was brutal. I was throwing up from pain, had to miss 3 days of classes and work, had extremely heavy bleeding. I thought it was a fluke. Then it happened again. I’ve had 4 brutal periods in about 2 months. I take my pills every day at the same time and haven’t missed one in years.

I live like 7 hours away from where my GP and Gyno are, and it’s like a 6 month wait to get one where I’m at. I CANNOT be missing 6 days of work and classes a month. I’m a grad student so these lectures are important, plus I lecture and work a full time retail job. I don’t know what to do. Will this go away? Is this a sign of something serious? Do I need to switch BC methods?

Since October of last year, my period has getting lighter. It flows out on the toilet but no matter how much I walk around or workout, there’s no flow. Up until October I’ve always had a heavy flow, when I would sneeze or laugh or stand up, it would flow out. Now, no matter what I do, no flow unless I’m on the toilet. Even on my second day. I’m worried and I finally found some doctors and I’m going to make an appointment. The doctors around where I live are no good. I’m just worried because I had surgery two years ago and I wonder if that has anything to do with it. It was for a cyst from endo. I’m in my 20s. I’ve been extra irritated and emotional. Something is definitely off. I’m wondering what could be causing it to not flow out? Each month it’s getting lighter and lighter. I’m worried until I get see a doctor. Has anyone else ever had this happen? I know only a doctor will know what it is for sure but until then I’m wondering what this may be? I’m just worried that there could be an obstruction or something

Hello! I’m 22 and was just diagnosed with endometriosis and pelvic congestion syndrome. I’ve also have had multiple cysts rupture. My doctor is recommending starting Myfembree but im just unsure since I’ve tried almost every birth control and they’ve all done nothing but make me heavily bleed and cramp every day for months straight. I feel like no matter what, I will always be in some type of pain and unhappy. I guess I’m Just feeling lost. Any words of advice from others who are going through similar are needed and greatly appreciated💜

I (FtM 24) have suffered painful periods, back pain and severe nausea for years. In the last 5-10 years, it's gotten particularly bad. My stomach always hurts and is tender to the touch, I'm always nauseous, my lower back hurts like he'll and can sometimes hurt in my hips, legs, and feet. It also sometimes hurts in my shoulders and neck. About 2 weeks before my period starts, my cramps and nausea get cranked up to 11. I'm usually vomiting and very fatigued. I have had a couple of pregnancy scares but, luckily, no actual pregnancy. I have an IBS diagnosis and most doctors will just shrug and say they don't know or blame it on the IBS. I've been to the ER at least 4 times over the past 3 years for this alone. They never find anything. I know Reddit can't give me real answers but did anyone else feel like this?

I’ve never experienced severe pain after orgasm in my 22 years of life until 3 days ago. Even the tiniest shortest one sends me into 10 minutes or more of the worst agony I’ve ever experienced. The pain was so bad I nearly vomited and all I could do was sit in my shower and sob while shaking until it was gone. I couldn’t stand up straight, almost fainted, and literally felt like my organs were going to fall out of me. Wtf is going on? Could this be related to my endo??? Or something else?! Either way, I’m miserable. Please help..

I’ve been dealing with this since August. I’ve gone to every appointment I could get. So far all we’ve found out is that I have a 5cm ovarian cyst. We think I’ve had a few others considering I’ve been in the ER twice with severe pain since August.

My gyno put me on sprintec and says we have watch the cyst and hope it goes down. I was finally able to get a GI appointment, but it’s in April. I also cannot have surgery because I have Von WillieBrands.

How do you deal with waiting? Seems like everything is being dragged out, but I also have no choice.

Hi, endo sisters!

I started Myfembree 3 weeks ago for endo pain. So far, I’ve had mild hot flashes and some sleep disturbances. Nothing too startling, but the most interesting side effect by far is that my feet are constantly wet. I understand increased sweating can be a side effect, along with hot flashes, but has anyone else had the sweating isolated to just their feet??

I'm not trying to Google diagnose so don't start downvoting yet!!

I've been having severe pain ever since I suffered a horrible medical medical event last year.

I'm 17 and the doctors were clueless until a ultrasound found a mass in my uterus. I went to a gynecologist (don't start hating on her, I swear she's amazing- she's the only reason my mom was able to have my siblings) and she told me she was not going to do a transvaginal ultrasound because she didn't think it was needed.

She said I didn't have PCOS (which I was diagnosed with by my regular doctor and put on a low dose of birth control for) because my periods were relatively regular.

She said I probably have Endo but that Endo is really hard to diagnose usually.

She put me on norethindrone acetate.5 mg per day. It's been 4 months of virtually no pain at all anymore.

I just had another appointment with her and she was glad I wasn't in pain and said to keep doing what I'm doing and see her in 6 months.

What does that mean though?? Do I have Endo or not? Will I have to get the scary surgery/biopsy?

I'm tired of the anticipated dread of having to have that done. If anyone could share their story I'd be really appreciative!

I’m booked in for my first surgery in April after years of suffering. It’s not 100% confirmed I have endometriosis but my symptoms and severe pain I get from bowel movements and even orgasms, indicate I do. My doctor did warn me it usually grows back after the 1st surgery, but of course each body is different.

Just wondering for anyone where it did grow back, how soon after the surgery did you notice it was back? Also did you get follow up surgeries?

I have Endo and Adenomyosis, I have just started drinking Mugwort leaf tea, and I really think it’s helping, usually my periods are SUPER heavy and I can’t wear tampons unless I am also wearing a pad underneath that 😣 I started drinking it 2 days before I knew my period was due and it’s nothing like it usually is, not as heavy and not as painful, it’s supposed to encourage blood flow and it’s a uterine and muscle relaxant, that’s why it’s supposed to be helpful during menstruation. It’s also supposed to aid digestion so that’s always a plus too. I get mine from Happy Herb Co but there are probably lots of other places you can get it. Just thought I would share in this community because us Endo girls need all the help we can get 🤗

I have had the most serious cramps I’ve ever tried, the cramps came in waves. Then suddenly after 3-4 hours with cramps in what felt like my uterus I got diarrhea which probably was what caused the cramps. I’ve had increasing pain with bowel movements in general, and I’ve had cramps before diarrhea before. But it was for hours before and so severe I thought I might not make it. And I’m still in pain and my lower belly is so sore from all the cramping. Do “normal” people get so severe cramping with diarrhea and for so many hours beforehand? Perhaps a sensitive subject but if you’re comfy with it please share your experiences with me🙏🏻

I can not recommend Dr. Jordan Klebanoff enough. I (25 y/o) got my endometriosis excision surgery in early December 2024 and had seven endo spots removed. Recovery was long (2 weeks until I was self reliant) but relatively easy going.

Here’s the biggest thing- I am just starting my second period post-op. The first had cramps and was heavy, but was manageable. This time the cramps are virtually nonexistent and a normal flow.

I can not begin to explain how much my quality of life has improved. I don’t have to take off work, I’m not laying on the floor asking my wife to end it, or drugging myself to sleep so I don’t have to feel the pain.

I’M SO HAPPY! If you are considering Dr. Klebanoff for your surgery, this is me saying DO IT!

If anyone has any questions I will happily respond! This is just my experience with him but he has said many of his other patients also experience this almost instant relief. If I need another endo surgery, I will be returning to him.

Hi,

I got my ultrasound done and the report says I have a cyst that might be endometrioma. My current OBGYN said that it is small so I do not need to go for lap. I am scared to take Birth control pills because of all the side effects. I have hypothyroidism but my OBGYN never caught it because according to them, since I looked normal weight, it wasn’t mentioned to me.

Anyway, I am looking for second opinion and would appreciate if you all can recommend Endo specialist in seattle / UW / eastside areas.

Also, is there anything that works? Do I have to live with this for rest of my life?

Hi guys, I managed to get scheduled for a laparoscopy as I suspect I have endo. However, I recently got a letter calling me for an ultrasound and also a transvaginal scan.

I wanted to know how this would help and what issues this could identify. Can anyone tell me? I'm worried. I hope they can find something.

(For additional context, I've been on the minipill for a few months now and it's helped. I haven't had a period for a while. I've had endo symptoms for 3 years before that)

Hi everyone. I had my first lap 4 months ago. I have 4 scars and I noticed they can still get pretty itchy. Has this happened to anyone else?

I’m on the waiting list for diagnostic laparoscopy but have noticed in the last few months severe pain in my lower back, groin and going down into my legs. It’s worse when I’ve been standing/walking to the point of being in agony when working and then spending at least 2 days after laid up in extreme pain unable to barely walk. Has anyone else experienced this and what sort of treatment do people recommend while I wait for surgery? I’m on co-codomol but it doesn’t help.

Hi guys, 20F. Obviously I know this isn’t a doctors office and I’m not expecting anyone to necessarily diagnose or give me help. Just wondering what was your experience and maybe some insight on other conditions I could possibly be experiencing.

I want to start by saying because I’m 20 I definitely feel like every gyno I have visited has been very dismissive. I haven’t had a lap done we have considered it and talked about orlissa that’s supposed to help. But no offical diagnosis. A little background is I have had painful and extremely heavy & irregular periods since I started them. I’ve since got on Depo last year and it’s helped eliminate my period completely. I have painful sex , every time. I have been in constant pain for 2 years consistently now which I’m assuming was triggered by pelvic inflammatory disease which I was given antibiotics to treat. But the pain is still lingering. I also have a dermoid cyst. My doctor recently says I should see a gastroenterologist because my cyst is too small to cause issues: which to me is dumb because symptoms of endo or pcos and other conditions DONT explicitly say you need a large cyst etc …. He was very dismissive at my last appointment and seeing that I had PID I would think this is directly gyno related. What should I do or how should I go about this?

Anyone have any thyroid issues after doing the lupron Depot shot treatments? I just finished 6 months worth and am feeling awful lately. Just had some blood tests and my T3 is very high. I'm being referred to an endocrinologist to further investigate, but I wanted to see if anyone else had this happen to them?

So I'm getting the surgery to see if I have endometriosis in March, which was unfortunately the earliest they can take me. (I've scheduled it about a month ago now ): ) Since then I feel like I've had a couple of flair ups. Every single time I think deeply about all my symptoms and what it could be if it's not endometriosis, and here is my question;

For those who are diagnosed, did you have anything show up on a cat scan?

I know you can't be diagnosed through that obviously and there's no real proof that anything on there is endometriosis related unless you're diagnosed, but for the multiple I have had done they said they have seen random bowel wall thickening.

I've also have had colonoscopys done and they said everything looked perfect, I was curious if anyone else has had that and has been diagnosed.

Thank you!!

So im in my mid 40s. Few years ago I had surgery for a hysterectomy then a year later a surgery that removed endrometrosis. I suffer from IC and the weirdest sided pain near my pelvic bone. My ob did a lot, tried me in many things. Things were getting better but worse after the diagnosis of IC. A few months ago my ob went to explore endro and to see what isn’t wishing my pain issue in the left side. Everyone expected something to be “up”. I also deal with a lot of cysts. My doctor gave me the option and I had her remove one of my ovaries with many thinking perhaps it’s just a problem child. When woke up from surgery I expect to hear all sorts of things but alas I found there wasn’t anything there.. Cycs get recorded about as they tend to rupture and put me in a pain. But there was no endo on the ovary or bowel, no scare issue that latched into a wall my ovary looked great but because I asked and to experiment my doctor followed my request and took it out. And I still had pain. I’m starting to think im crazy or something. No one can explain this pain.
Has anyone experienced this before? Other wise im perfectly healthy. Its now a month later and no improvements