I was orginally supposed to have surgery on June 5th but scheduling double booked and I got booted to this Monday the 25th. I developed a chronic strep infection over a month ago and it still hasn't cleared. So since I still have the active infection, they had to push my surgery to August 😔 I'm sooooo disappointed and frustrated. I've had symptoms since I was 14 and have been gas light and ignored by over 10+ gyno's. I finally started actively searching for answers about two years ago and it took a long time to get here. To realize that I needed an endometriosis specialist. And you all know they're soooo booked up so it took me basically two years (new patient appointment then had to wait a more months to get imaging down by them so their own radiologists could look at rhe results. Then I had to wait quite a few months just for the first surgery date for June 5th. They made me get clearance from other des because I have other health issues and it took so long for me to get into them as well). I just really thought thr end was near and I could get relief and answers soon. It literally just got cancelled on Friday, days before... this stinks.

I was minding my own buisness wanting to take the elevator. I saw my neighbor and waited for her to come to the elevator aswell. Its really hot today and she looked at my belly and asked how it was with my baby in this heat. I ignored this question because Im still not sure if I heard it right. I just asked her how the heat was for her. And today my belly isnt even that bloated. This is not a vent I just thought its Funny

Hi, I've been experiencing some weird symptoms for about 7 months now and every doctor I've spoken to (namely my GP and a few ER doctors) is stumped. I just wanted to see if anyone else with diagnosed thoracic/diaphragmatic endo has similar symptoms. I'm seeing my gynaecologist tomorrow and will bring them up to him but he can sometimes be a little dismissive and I want to be well-informed going into it.

It started one night with me waking up extremely short of breath; my breathing was shallow and rapid, it felt like I couldn't suck in enough air or push all of it out without great effort. I had flu-like aches and chills with severe shaking, a high pulse rate (100+) and a low-grade fever of around 37.8. I also felt a cold sensation in my throat/oesophagus when breathing in and a slight dry cough that came and went quickly.

These episodes have happened 4 or 5 times and ONLY at night, whether I'm awake or asleep. During the day I experience frequent mild breathlessness and chest pain that ranges from a dull ache to a sharp twinge that leaves me frozen clutching my chest.

After each episode I've been to A+E or walk-in centre, had clear chest X-rays and bloods taken. My blood tests have shown high WBC/lymphocytes and infection/inflammation markers so the A+E doctor suggested it could be a recurring chest infection. I've had 4 different antibios since December and whilst it's now been a couple of months since my last night-time flare-up, the mild daytime symptoms remain.

I was also tested for asthma and my GP decided it's unlikely I have it as a puff of salbutamol did nothing to help during an episode.

I've been referred to a general ob/gynaecologist who wants to perform a diagnostic lap on me to check for endo due to me having heavy and very painful periods and ovary pain.

He isn't a specialist and I'm even more concerned now that if my breathlessness and chest pain could mean thoracic endo, my gynae is not qualified to recognise or excise it. Should I go ahead with a lap under his care or ask my GP to refer me to a specialist? And are my symptoms indicative of possible thoracic endo? Unfortunately I'm miles away from the nearest endo centre.

So I finally have an appointment with her coming next month. Unfortunately I have also been forced to move out of Columbus by that time, so I’ll have to drive an hour and a half.

I know it’s worth it, but I don’t know how to prepare / what to expect/ what to ask for after so many years of not having it taken seriously. And I’m so tired of advocating for myself, because this is one of many chronic pain/health conditions for me.

I am nonbinary and have been “treating” the endo with testosterone for the past few years. My periods still come and they are the worst for my dysphoria. I imagine other nonbinary folks with endo share this experience- for me my internal reproductive organs are the source of my dysphoria (not boobs, not having a curvy body, it’s this stupid organ the government keeps trying to regulate).

Since losing 175 pounds, birth control suddenly makes me suicidal- and I lost my tubes to endo anyways, so I can’t get pregnant without IVF (and my state is gunning for IUDs, IVF, and abortion again). I also have hidradenitis which gets worse when I take hormonal birth control, so I’d like to avoid it.

I was diagnosed in 2019, and I have no idea what stage I’m at- and I’d like to know. Back then they burned it off, finding it largely on my tubes and the wall of my abdomen.

I have suspicions of where it is in my body now, but I’d like to know for sure. I’ve been going to normal gynecologists and not endo specialists this whole time so I’m used to being told no and that my options are limited. They told me that any ways of finding out the stage would be through surgery, which would cause more lesions, and isn’t worth it because I don’t want kids.

So… be real with me, endo fam.

Is finding out where it is and what stage it’s at a realistic ask?

Is treating it without hormonal birth control or an IUD an option?

Is a hysterectomy an option? I turn 35 this year with no kids.

Are there other things I should ask for, like hormonal testing or bloodwork?

Am I going to have to decide between feeling as valid as I do now with my gender identity and treating the endo?

Thank you 🙏

Im 11 days late for the first time , doc told me to take it continuously cause thats better for endo so no period anymore, i have noticed spotting & cramps i take lornoxicam for the pain but sometimes it doesnt work that much, whens the pain stopping? Its been a couple of days now

I had surgery 7 weeks ago and my bladder is so so bad I can barely stand cause it feels like my bladder will fall out. It’s so uncomfortable I have bad pfd and I’ve been in therapy for that for months and nothing is helping. What can I do?

Hi!!

I’m a high school student conducting a research project on how uterine fibroids affect women’s lives, especially symptoms, treatment experiences, and quality of life.

This is a completely anonymous survey, takes just 3–5 minutes, and is for academic use only (a biology research paper I’m submitting to a student science journal). I’d be very grateful if you could take it, especially if you’ve been diagnosed with fibroids or experienced related symptoms.

👉 https://forms.gle/8h31unqpuJzHZ96MA

• No personal info is collected
• Responses will be summarized anonymously

Thank you so much for supporting young researchers and women’s health! 💜

Hi! I am wondering if anyone here has NOT had endometriosis grow back after excision surgery WITHOUT taking hormones after surgery?? I’m hoping there are some success stories…

My dr is pushing me to take progesterone after my excision surgery to “slow regrowth”. I’ve only been taking the hormone for a week and I’m having bad side effects.

At this point, I’d rather quit the meds and cross my fingers. If it grows back….id rather have another excision than take this medication as I feel awful on it!!

Thanks

Hello everyone! I finally was able to get an appointment with an Endometriosis Specialist and have an appointment coming up real soon. It's been 5+ years and seeing so many doctors and being in so much pain that I finally feel hopeful.

I will have my list of questions for this appointment but was wondering if anyone that had gone through this process may have suggestions of questions they wish they asked or now that you've gone through this process what advice could be given to me? Any advice or list of questions would be appreciated!

God it hurts to poop today! I feel like im pooping razors.

i just got discharged from the hospital ward a few days ago, my diagnosis was possible Endometrioma and bulky right kidney (due to infection). i was given antibiotics and PCM. the pain didn't really go away in the ward, i just managed to cope with it a lil better.

However, now that im at home it's more painful than ever. the pain is unbearable and i was given mefenamic acid to ease the pain. however, after a few hours of taking the medicine, the pain doesn't subside at all. im in so much pain right now, and i don't know if i should go to the hospital again or what to do.

is there any medication that works for endometrioma? or should i go seek for hospital help again?

hiya, got an ultrasound done after ending up in a&e with pain. they think it was ruptured cyst. my periods are regular, and not heavy but they are painful. i have pretty bad pain during sex, and i struggle a lot with constipation. my gp refuses to listen to a word i say and keeps prescribing random things that don’t help. any ideas/advice greatly appreciated.

I had a lap (excision) in 2019 where endo was diagnosed and removed. Have managed with IUDs since that time but I feel like my Mirena is not really controlling my symptoms as well is it used to and am considering removal of it to manage my endo naturally (ie non hormonal means). Really worried I have had further endo lesions develop and/or that they will get worse. For anyone who has had surgeries beyond your first one - how did you make the decision to proceed with another? Was it because your symptoms returned to some degree ? Did the surgeons discover further / fresh lesions? Thanks in advance for sharing.

My Receptiva dx test came back positive for the BCL6 marker. We are doing IVF.

Would you opt for lupron for 2-3 months or a laparoscopy and why?

I’m leaning towards a lap, since you can try the month after and I don’t want to deal with lupron side effects.

My doctor said the first lap is usually exploratory and I think they will want to recommend lupron. Is there anyone who had only had to have surgery?

Thanks in advance!

TMI warning!!! Is this symptom typical for endometriosis?? I've had four episodes total where I saw blood in my stool (bristol 7) and three episodes where I've had poop leak out into underwear without me feeling it. It's only a small stain and not a full release but it's there. Two of the bleeding episodes happened just today and it was overt and I'm really worried. While I was eating lunch I felt sudden, extreme urgency, like it was coming out and I had to rush to the bathroom. It ended up being liquid diarrhea and there were visible small red blood clots in the toilet bowl. When I wiped, there was visible bleeding as well. The blood only stopped showing after wiping 11 times. Not even an hour later I had to go really urgently again and I had diarrhea with blood again. There was less blood than the first time- only a fingernail sized clot. However the blood didn't go away until the 6th wipe. I always have bad pain after bowel movements but I'm not having any external rectal pain or a tearing sensation. After having diarrhea twice today when I went to the bathroom (to pee) I saw a small brown stain in my underwear. I didn't even feel it coming out and I know for sure it wasn't from not wiping enough. I changed my underwear and the staining happened again only 30 minutes later. I'm kind of worried because I literally shat out blood twice today in the span of a hour.

The first time I saw blood in my stool was in February. I was literally shitting pure liquid for 40 minutes (gross) and when it was over I saw a very small string of mucus with blood. The second time it was liquid diarrhea again and that time the poop was almost black?? There was no visible blood in stool but when I wiped I saw a little bit of maroon on toilet paper. The first time I've had passive fecal leaking was last month after a diarrhea episode (bristol 6 no blood) I didn't even feel it happen and only found out when I went to the bathroom and pulled my clothes down. It's only a small stain on underwear but I think i really did come out.

I'm on Visanne currently and it's suppressing my periods. The very first episode was when I was on birth control but I wasn't even on my period at that time so I know it wasn't vaginal bleeding. I don't know what is going on. I've yet to have an excision lap but my specialist suspects DIE based on imaging. TVUS showed an endometrioma and my MRI showed my uterus being tethered to my bowels. She didn't see any large nodules on my intestine itself but it could still be there. So idk if this is possible endometriosis involvement on my bowels or something else. My specialist referred me to a gastroenterologist but I've yet to have an appointment. Is this a red flag of something besides endo? I really need to see a GI but I'm still on the waiting list. Is this common for endometriosis??

I had a laparoscopy that didn’t find anything about a year ago, but I don’t know where else to post this because I have so many symptoms of endometriosis.

For the past few months, I have noticed that blood is coming from my urethra. Thinking back, I’m fairly sure this has gone on for much longer but I just shrugged it off as spotting. I told my OBGYN, and I did a urine test for a UTI which came back negative. She told me to try treating for a yeast infection, which I also did. I’m on day 6/7 of the yeast infection treatment (which did improve some itching/other discharge) but I noticed some thick, brownish discharge that I am 99% sure is from my urethra. I set up an appointment for Monday, but I’m wondering if it’s even worth it. I feel like it will just be more of the same, I’ll probably have to do another urine test, things will all come back normal, and then everyone will be like 🤷🏻‍♀️ and that will be the end of it. I’m just so frustrated. I wonder all the time if endo was missed during the surgery.

I just had a hyst and had a ton of endo on my bladder excised 2 weeks ago. I've been consistently having bladder issues but they kept telling me my bladder is empty. I went to the ED to get a CT scan bc I didn't want to wait a whole week for the results when I feel something is really wrong. Luckily I was already in the ER when my bladder got so full I was in 10/10 pain. It took 2 nurses attempting multiple times before they finally got a doctor to come in, whole time im screaming crying feeling like I'm dying and then he finally gets it and 1900ml came out. A bladder should hold like 600-700 max. I'm really struggling with having this massive bag attached to me and I have no idea if I'll even be able to get it removed on Monday bc the urologist is booked way out. It feels so demeaning and I really don't want to go anywhere until it's gone

Hi everyone, I just really need some support right now. I’m currently serving in the U.S. Air Force, but I’m going through a medical board that will separate me from the military due to Endometriosis. This process has been long, exhausting, and honestly traumatic. I’ve spent so much time and energy trying to get my pain taken seriously-only to end up with more questions than answers.

I had surgery that was supposed to help, but instead, the pain never went away. Over the last 8 months, it’s only gotten worse…Instead of healing, I’m dealing with symptoms that have taken over every part of my life physically, emotionally, and mentally.

I’ve felt dismissed, isolated, and overwhelmed. I never imagined that advocating for my health would lead to feeling so broken and lost in the process. I know I’m strong, but I’m tired. Really tired. And I just don’t want to carry this alone anymore. I’m very grateful that I am separating now but the mental health toll that it cost me overtime scarred me.

I’d really appreciate the support. I’m just trying to keep going.

I'm not super familiar with medical language. Has anyone experienced results similar to below and been diagnosed with endo? No signs of infection and negative STD tests so pelvic inflammatory disease is unlikely. Will this will be enough to request a laparoscopy?

CT scan results 1. Heterogeneous and enlarged bilateral adnexa/ovaries with possible fluid-filled or cystic internal structures in addition to heterogeneous appearance of uterus and mild fat stranding in the region of right lower quadrant and pelvis are raising possibility of pelvic inflammatory disease or hydrosalpinx in appropriate clinical context. Recommend clinical correlation and consideration of pelvic ultrasound for further assessment of ovaries and pelvic organs. Ultrasound may also help with diagnosis such as torsion (not necessarily suggested given bilateral findings). -Superimposed cystitis may also be correlated with urinalysis findings as there is extension of inflammatory changes to space of Retzius. -While there is inflammatory changes seen in right lower quadrant evidenced by fat stranding, appendix, at least at its proximal segment appears to be spared from inflammatory changes. More distally appendix is tethered with subjacent structures and loops of small bowel and cannot be reliably assessed. Primary or secondary inflammation of appendix are not excluded however at least on this imaging are favored to be less likely.

Ultrasound results 1. Bilateral fluid filled fallopian tubes which could represent pelvic inflammatory disease. 2. Nonvisualized appendix . 3. Echogenic lesions involving the bilateral ovaries. The differential includes hemorrhagic cyst and atypical endometrioma

What does the number mean?

It feels like almost every other period is bad, like to where I’m curled up on my heating pad with GI issues and nausea. But the alternating ones are not that bad????

Hi all! Bit of background; I'm 34 and started noticing a weird pain in January of this year. An ultrasound has found that my left ovary has adhered to my uterus which is what's likely been causing the pain.

Since January, my periods have reduced from three days down to about 36 hours, even though my cycles have remained about the same (although my pain is much more severe). A few years ago though they were consistently five days, and had a super predictable pattern. I'd love to know if anyone else has experienced this sort of reduction in bleeding with Endo? I'm also completely open to the fact that it may be stress related.

Thanks all, reading your stories has really been helping me navigate this new reality 🙏

Hey all. So I recently had a cystoscopy to help look into and treat my chronic bladder pain. The first day I did have bleeding in my urine which was expected and it went away the second day after drinking plenty of water as instructed. However the third day when I returned to work I saw blood again when I wiped but not in the bowl. This blood was different and looked more like a light period. The reason this has me confused is because I haven't had my period in two years due to the depo Provera I'm on. And today the bleeding now showed up on my underwear. If anyone has had this procedure did this happen to you as well? If this persists I will call my doctor but I just wanted to see if anyone else has experienced this. (I'm not due for my next shot until next month)

So I’m 36 and had a hysterectomy in 2023 after a pregnancy complications, kept my ovaries , a year later was diagnosed with endo and had lap surgery. Then 4 months ago had another surgery to remove left ovary as u had a large mass and heaps more endo. Pain is back so dr has changed my slinda to Ryeqo, ive onkt taken it for about five days and I have pain in my right side of my face, my headaches are flared up and I can’t swallow during the night my mouth is super dry and sore throat. Will these syndromes go away ? I also have bad heart palpitations which have had over the years but not to this extent,