The anger I feel towards these regular useless doctors putting women through SURGERY for a condition they don’t even know the basics about!! Omg. My heart breaks every-time I read a story of a women going through hell just to be taken seriously and finally close to a diagnosis but then is 1, left with no answers after surgery because the doctor doesn’t know how to spot endometriosis or 2, the women is left in more pain and quality of life is down even more all because a doctor had such a big ego that they had to do all of this instead of telling them about endometriosis specialists!

Shame on every single doctor that decided to put a person through this. Not only are they gambling on fertility and damaging overall quality of life. They’re also making it harder for endometriosis specialists. Imagine a world where a gyno can talk about endometriosis specialists as a team instead of trying to tuck them away and hide the fact they’re out there..

Notes from a senseless war going on inside my body. I started spotting again so at the moment i'm on a flare. Pain so severe that it's difficult to stand, nauseated to oblivion, sciatic nerve ready to do its part with electric-like shocks, brain fog hitting out of nowhere, exhaustion making it worse, at times even hard to breathe normally, my hips aren't working properly and so are my legs, making it hard to move around, my belly feels horrible, electric shock-like and throbbing pain combined, going to the bathroom is a tragedy, skin gets very sensitive, pain is widespread from my chest to my feet, my bones crack and hurt more than usual, my back is begging for mercy, migraines are the cherry on top.

Basically, it is as if it was a pile of lava that exploded and set everything else on fire. Some things got burnt over the years some are burning now.

All of this doesn't go away easily nor once the worst of it is done things get quiet, because i still have all these symptoms, they just get somewhat manageable on a normal day. I'm tired of surviving this pain. I mean, not that i have any other choice but to get through it, but it's tiring and i wish i could have a day off

Does anyone have advice as how to manage endo belly? I start the day pretty flat in the stomach, but within hours of being awake, I look pregnant. I'm awaiting surgery next year. I also have an almost inch big hemorrhaging cyst on my left ovary.

I've tried lowfodmap, dairy free, gluten free (I have celiac so that's a constant), I don't have animal products aside from fish, did treatment for sibo, food allergy tests etc... I'm on my last straw. My body makes me feel inhuman in my own skin 😔

Hello!

I recently had to have my Mirena IUD removed as it became dislodged and began to become embedded into my uterus. After having it removed (mind you, it’s been a little over a week since the removal) I have been to the emergency room TWICE.

I was vomiting, SEVERE pelvic pain, chills/fever, etc. The ER doctor this most recent time was very dismissive as she said that there was no way that there were any changes since I had been in the ER earlier in the week.

I work in healthcare and was NOT about to let her gaslight me so I snapped and asked her what her differential diagnoses were and why she was refusing to do a full check-up. She immediately started ordering tests after that. 🥰

But I guess my question is: I was prescribed antibiotics for suspected PID. But when she asked me about sexual history, she didn’t believe me when I said that I have never been sexually active (I haven’t).

Can you still be diagnosed with PID w/ no sexual history?? Or am I taking these antibiotics for nothing. 😩🤕

Who all here has silent endo? What are your experiences?

TW: mention of SI

Hi all, I am hoping to get some perspective and see if anyone has had similar experiences to me, as all of the information I find via Google seems to just be overwhelmingly supportive of the Mirena IUD but my experience has not been that.

For a bit of background, I was diagnosed with endometriosis in February of this year after an exploratory laparoscopy and during surgery my doctor removed my Nexplanon implant (which was due to come out in August of this year anyways) and placed a Mirena hormonal IUD which we had discussed before surgery as a possible way to help stop my period and reduce my symptoms. They also prescribed me Slynd to take on top of the IUD to try to stop my periods entirely but I legit felt like I was going insane and so I stopped the pill in late May after I consulted with a different doctor who is an endometriosis specialist and told her how insane and overwhelmed I had been feeling.

As a side note, I also suspect that I may suffer from PMDD but I have not been officially diagnosed and when I brought up my concerns to my gynae, they simply offered to prescribe me anti-depressants with no further investigation or discussion. I cannot take estrogen based birth controls due to the endometriosis and also my history of migraines with aura.

---

So that brings us to now. I still have the IUD in. I spotted constantly for the first \~3 months that I had it and now get a light period on a semi-regular cycle (the bleeding is light but my symptoms are pretty much the same).

HOWEVER

The mental health side effects are still so intense. I am so so so moody and I catastrophize and ruminate on things to the point where I have trouble focusing on things like work or school (college). It's the worst in the week before my period. I will legitimately cry for an entire day and have intense passive SI.

It feels like it's come to a head lately and my partner and I have been fighting over stupid shit when we typically don't get into disagreements or arguments frequently at all. Yesterday we legit got into a screaming match after I completely lost my cool over a small disagreement. I am currently \~2 days out from when I'm supposed to start my period.

I know from what I've read online that the IUD can take up to 6 months to fully "settle" and I'm approaching that milestone now while still feeling out of control mentally/emotionally.

I am due to have another laparoscopic surgery this Friday (long story, first surgery was not done by specialist and thus my endo was left behind due to the sensitive location which was primarily on my GI system) and the plan was to replace the IUD with another Mirena of the same kind because my surgeon said that they will need to remove it for surgery and they typically cannot be put back in. But....I'm scared?

I hate the way I feel lately, I don't feel like myself. I am totally insufferable to be around and I am incredibly overly sensitive and reactionary.

Please if you've had a similar experience will you share your story?

I don't know the best way to move forward but right now I'm leaning towards asking my surgeon to not do the new IUD this week because I don't think I can handle feeling like this much longer.

If you had a similar experience but it did eventually "settle" I would love to hear from you as well.

Thank you so much to anyone who chooses to share, I am lost and looking for perspective 😭

Hello, I (36F) just learned today that I may have endometriosis, my doctor scheduled a diagnostic laparoscopy for Aug 4. He mentioned some gas can get trapped and cause shoulder pain, how did you deal with this? I’m hopeful to find a cause for my irregular and painful periods, especially since the last few months I’ve had diaphragmatic pains every time I breathe on my cycles. Any tips for recovery are very appreciated!

I did a pelvic mri completely unrelated to this and the conclusion was basically

"Examination revealed no significant findings in the perianal region.

Thickening of the right uterosacral ligament, nonspecific, but which may correspond to a focus of incipient deep endometriosis. At the clinician's discretion, MRI with a protocol directed to endometriosis research may provide additional information."

Which doctor do i even go? The hell do i do? What???? What even is this

Hi there, my wife is awaiting a booking for laparoscopy, and I'm wondering if anyone can point me towards the best resources for caring for someone in recovery. Things like safely lifting and moving them, helping in the shower, cleaning incisions, other things to keep an eye out for. I've never done this before, so any information would be hugely appreciated.

Thank you!

I have endometriosis confirmed through laparoscopy in Feb 2024. It’s been a while since my surgery. I’m wondering if anyone has ovulation pain that feels like your ovary is going to burst. It feels swollen on one side and I can barely walk because it feels so heavy and swollen. Can’t really explain it.. I guess the best way to describe it is like a gas bubble stuck near your ovary… but it’s not gas. It happens every ovulation. That’s the clear sign I know I’m ovulating. I do track my cycle with natural cycles and it does coincide with what I’m feeling. Maybe my endometriosis is back since it’s been almost 3 years since my surgery. Meh…

I have suspected stage IV endometriosis with possible occult ovarian malignancy. My insurance will only consider an out-of-network contract for UC Davis or USC after four in-state surgeons either declined my case or recommended removing my uterus and ovaries. Has anyone with a similar case been treated at either center by a multidisciplinary team (gynecologic oncologist and colorectal surgeon), or by a surgeon experienced in managing both aspects of care?

Thank you so much for any recommendations or experiences you’re willing to share.

Just curious if I'm ghe only person that takes 6 500mg Tylenol a day??

I have 2 endometriomas: one on my right ovary, and a now ruptured one on my left. 3.5cm after it already ruptured, so who knows how big it was beforehand: "much larger," says the doctor.

The ER doctors/radiologists used the terms "hemorragic cyst" and "chocolate cyst" and "endometrioma" interchangeably. Why do they do that? Hemorragic cyst and endometrioma (aka chocolate cyst) are two different things.

"CT abdomen and pelvis was performed and showed 3.5 cm L hemorrhagic cyst, likely representing ruptured cyst. Cyst likely represents chocolate cyst related to endometriosis. Complex right ovarian cyst measuring up to 2.6 cm, favored to represent an endometrioma."

I feel like the idea of endometrioma ruptures being "rare" is because they aren't actually diagnosing the ruptured cyst as an endometrioma. Anyways, gonna go hug my heating pad and look forward to my third excision surgery in September.

Just curious if anyone else takes 6 Tylenol 500mg a day?

Thoughts on taking 6 Tylenol a day for about 5 years 😳

Hello all! I'm wondering if anyone has had the mirena IUD slip because of Endo? My gyn put it in in April and said to check in 3 months via ultrasound to make sure it stayed in place. The ultrasound results say it's in my cervical canal. Ugh it's helping with my heavy bleeding so much so I want to get it replaced with a new one but I'm afraid it's just going to fall out again. I feel like my uterus is too efficient!

Hi there, my wife is awaiting a booking for laparoscopy, and I'm wondering if anyone can point me towards the best resources for caring for someone in recovery. Things like safely lifting and moving them, helping in the shower, cleaning incisions, other things to keep an eye out for. I've never done this before, so any information would be hugely appreciated.

Thank you!

Hat jemand Erfahrung mit der ersten Menstruation nach Entbindung?
Unser kleines Wunder ist nach 6 Jahre Kampf endlich auf der Welt und jetzt habe ich dennoch richtig Angst vor der ersten Periode…
Ich weiß es wird gesagt das es angeblich besser wird was wenn nicht.
Was wenn der Schub so schlimm ist das ich wieder nicht laufen kann vor schmerzen… wie soll ich mich dann um mein Baby kümmern…

I'm 27 and my AMH is 4.67. I've had a hemorrhagic cyst but I’m not sure it ever resolved. Could a higher AMH point toward an endomtrioma? Thank you for any insight!!!

I recently had a laparoscopy because of suspected endometriosis. The main reason was that my MRI showed adhesions involving my bowel and other organs, as well as scar tissue. I’ve had pelvic pain for years.
During the laparoscopy, they said they didn’t find any endometriosis. They performed adhesiolysis, and the surgeon thinks the adhesions are most likely from an appendicitis I had as a child about 20 years ago.
What I don’t understand is how that would explain my heavy menstrual bleeding, cyclical pelvic pain, and pain during sex. Before the surgery, two gynecologists who presented themselves as endometriosis specialists both claimed they could see signs of endometriosis on ultrasound. But during the laparoscopy, they said there was no endometriosis at all.
Has anyone experienced something similar? Can adhesions alone really cause symptoms that are so closely linked to the menstrual cycle?

Hey everyone,

I am a 25(F) who was diagnosed with PCOS around 6 years ago. I have typically always had abdominal pain and nausea around ovulation and up to around a week before my period. More recently in the last 2 years I have had episodes of quite severe pain in my abdominal and rectal region with cramps and a feeling of fullness, even pain when going to the washroom, additionally also pain with intercourse (like a sharp stabbing, I will literally curl up into a ball).

About 2 days ago I had one of those flares and went to the ER as I was in debilitating pain. They did an ultrasound and said it looked pretty much normal, so they are not sure where the pain is coming from and to just take advil (funny enough earlier in that day I took a naproxen 500mg and it did nothing to mitigate pain). In the past 2 years I have also had a colonoscopy due to significant rectal bleeding and even after that nothing serious was found and even the hemorrhoids found were quite mild.

I am starting to feel that the pain I am having is not being taken seriously, especially as someone who has always had quite a high pain tolerance (Used to be a competitive athlete and had a bunch of breaks, even a hip surgery at 16). So just wondering if anyone has had a similar experience and if I should push for more examinations or if this is just PCOS pain.

Any info would be great!

I know this isn't a big problem compared to pain and fatigue, and all the other fabulous stuff that comes with endo, but it's really annoying. My hair gets so oily, and no matter how many times I wash it, nothing helps. Even after a shower, 10 minutes later, my hair is super greasy. And my hair is thin, so when it greases up, it tangles every 2 minutes.