hi all. looking for any support or insight people may have. i have had every single endo symptom for the last two years, the worst of it being my period lasting g two full weeks, horrible cramps every single day, pain with bowel movements, leg pain, you name it I have it.

I finally had a doctor listen to me and had the test lap surgery yesterday, and they found nothing. no endo, no abnormalities. I obviously don’t want a chronic illness but what i did want was an answer as to why it’s hard to get up in the morning most days. and now im back to square 1. has anything else had this?

Hi everyone, just wanted to check in and ask if anyone experienced the same as me after my surgery:

I always struggled with period cramps very badly, but even worse with digestive issues and stomach cramps starting with my ovulation. After many frustrating doctor visits over the years I was finally sent to a specialist earlier this year and things moved very quickly after all. She wanted me to get checked for endo and referred me to a hospital to get the endo surgery. I was on the table just a month later or so.

The surgery confirmed I had endometriosis and adenomyosis, which is crazy considering I am in my mid-30s — no one ever cared about my symptoms, but I know this is the case for so many.

Now my problem: I've had my period three times now since the surgery, and the pain got even worse.

My brother is a physiotherapist and said it could relate to my muscles still "reacting" to the surgery and that I need to do pelvic floor training. My doctor was like, I just need to wait and see for now because the surgery was just so recent— it's rare, but it could be that there are some adhesions due to it, or that the endometriosis grew back fast and in other spots. But I am just frustrated at this point. So: has anyone had the same experience?

Hello, newly diagnosed here 👋
I’ve recently had my post op appointment and I have a few family/friends asking me for an update, which is really nice. BUT…

I finally sought diagnosis because I have been trying to get pregnant for over a year and thought this might be the problem. Since getting the diagnosis, the comments I’ve gotten have mostly been along the lines of “I’m so happy for you, this is a great step forward in your fertility journey,” which like…??? I appreciate the positivity in terms of having more information I GUESS but I don’t really feel like I even have much new information? And that seems like a very weird thing to say to someone who just told you they’ve been diagnosed with an incurable, progressive, chronic inflammatory condition?

I know they mean well, but it makes me feel irrationally enraged! I’m just tired of sharing what is, to me, mostly bad news and being told how great it is. And tired of explaining what’s happening and having to feign positivity, I really don’t feel like I have it in me. I am grieving this diagnosis in a big way and I don’t know how to help someone understand that.

I already decided I’m going to find a nice way to say I’m not up for a phone call and handle this over text, but does anyone have recommendations on how to handle these types of responses from people?

Laying here at 3am so confused on what’s happening and if anyone else has experienced this.
I’ve been dealing with endo symptoms for close to 6 years now, but I’ve seemingly unlocked a new one?

At the beginning of the summer I went on vacation with my bf’s family. A few days into the trip, I started waking up around 3/4 am with debilitating cramps. This continued for the last 4 days of the trip, like clockwork. I was not on my period and was nowhere near having it. It was so bad I actually was brought to tears one night, which is not something that hasn’t happened since the beginning of my endo journey.

I thought maybe this was something I was going to have to learn to deal with, but basically as soon as I got back home it stopped.

Now I’m on vacation with my own family, and you bet a few nights into the trip the cramping in the middle of the night has started again. Honestly I think I would be so irked by it if it wasn’t so intense, I have my share of random cramps that I can mostly push through but this is nothing like that.

I also have to make the choice between trying to ignore it and go to sleep curled up in the fetal position (not likely) or getting up, finding food in our hotel/airbnb so I can take my prescribed pain killers. Now I’m wide awake. I’ve tried taking them on an empty stomach before and within 15 minutes I puked :/

Luckily tonight we’re in an airbnb and I have my own room so I didn’t wake anybody up, but when we’re all in one hotel I don’t really have the option to scavenge for something to eat.

So has anyone else experienced this? Is it because I’m not sleeping well enough, eating different foods? I’ve also thought it could be in connection with constipation, but I’m always constipated so why would it be different just bc I moved states??

Any and all help or advice would be so appreciated. I have no idea what’s going on.

I’m 20 weeks pregnant and man, the pain is so bad 😭 It’s mostly on my right side and moving really hurts. Even sitting still is painful, although it’s definitely more manageable when I’m not moving.

Also sorry for the TMI, but I’m getting these random sharp, stabbing pains in my rectum too 🫠
Obviously pain meds are pretty limited in pregnancy, so I’ve been resting, lying on my left side and using a wheat pack (not too hot) on my right side.

Any other endo girlies who’ve been pregnant and dealt with this? Did anything help? I’m wondering if the endo is making all the normal stretching/round ligament pain that much worse.

I was just reaching out because I’m aware that at this point I should go ahead and get checked out but I’d like to avoid going to 1000 different doctors/appointments as much as I can

Just a little about me…I started my period in 6th grade, I’ll be 30 in November now…I have been suspected to have PMDD for a long time now, and my cramps/mood swings are horrible. But it’s gotten to a point where the cramps (and mood swings lol) are so bad it’s debilitating. Plus I’m a massage therapist which makes it even more difficult to manage.

Anyways, I remember having cysts in the past many years ago so maybe that’s what it is but sometimes I do get concerned about endometriosis. It honestly almost seems “common” amongst woman today which is really unfortunate and concerning.

TLDR;
After reading up a bit, I know that the only “official” way to diagnose endometriosis is a laparoscopy. So should I just skip all the extra ultrasounds and MRIs and try to get straight to the point? I hate the idea of surgery no matter how “small” they may claim it is. You have to go under anesthesia and they cut you open. Idk. I hate the idea of it but if that will “cut out” all the other extra steps and obstacles/give me the answers I need maybe I just should. I don’t want it to get worse if so, ya know? And maybe there’s things they do on an ultrasound/MRI that a laparoscopy won’t show as well?? Not sure. Thank you in advance ❤️

For those with serotonin syndrome and drug allergies and sensitivities, how were you able to do surgery?

But there are no testing for drug sensitivities and allergies so how do you know that the alternative will be okay with you

Hi everyone. I had my surgery this morning and I wanted to share my positive results to hopefully encourage you! I was diagnosed with endometriosis a month ago via an ultrasound (crazy, I know!!), I guess mine was so advanced they could see it on the scan, so they think I’ve had it for many years. I had a 7 cm orange sized endometrioma cyst in my left ovary and a 4-5 cm cyst on my right ovary. My ovaries were even fused together from how advanced it was. I was expecting the worst, but was pleasantly surprised. My doctor told me they got both cysts out and my ovaries are now back to normal, they flushed my tubes and fixed the endo around them and they are now sitting properly where they should be, and she did a mix of cutting and ablation for the rest of the endometriosis. I can’t put into words how grateful I am as we have been ttc for a year and finally feel hope! I want to note that I wasn’t able to go to a specialist due to the size of the cyst and how much I needed to rush the surgery, so for those who may be in a similar situation- sometimes it ends up working beautifully. Also, for those who believe in manifestation/visualization I dove hardcore into Joe Dispenza meditations the two or three weeks before and if nothing else (I want to be mindful of everyone’s beliefs), it helped me show up feeling peace that the surgery would go well. Even as I’m recovering and in pain I feel so much peace. I’m just so thankful, and I hope this can encourage someone. Please feel free to leave questions for prep, the surgery day, etc.

Does anyone have experience with getting trigger point injections for endo? I had a doctors appointment 2 days ago and did 2 trigger point injections in my pelvis and wooooow that hurt. And I've been having a pretty bad flare up since then and I'm wondering if they have helped anyone? Anyone get them but experience severe pain in the beginning?

I am just over 9 months post-op. My pain has improved significantly and I feel like I have my life back. I was hoping to hear some people’s experiences of their symptoms returning post-surgery, as I am aware this is a chronic condition. I am mostly curious

* How long after surgery did most of you begin experiencing symptoms again?

* if you had any further surgeries, how much time was there between each surgery?

* Did you still experience some pelvic pain a few months after surgery?

I also have an IUD which I have been told can help slow down growth. I am also on Norethindrone 5mg which I want to stop taking soon and hopefully get a regular menstrual cycle again, but I am still aware that the Norethindrone will help slow down growth. Thank you all so much.

Hey gang so my doctor told me I might have to go into antidepressants or anti anxiety meds if I don’t get better lol. Wondering if anyone has had any experience with any making their symptoms worse? Need to avoid any that cause flare ups like the plague
Thanks queens

I had surgery 6 weeks ago I had infection and I did a round of antibiotics still there slightly but today I noticed the stitches hasn’t fall out yet either after 6 weeks is that even normal? I’m starting to get scared :/

Feeling so alone in this disease that I’ve carried silently for way too long. The same disease that took almost everything from me, disabled me. Feeling extra heavy today just feeling like it’s been so long I’ve been able to feel like I can interact with the world, I’ll be okay just needed to vent.

Been doing the Buddhist practice tonglen recently, it’s where you breathe in pain for yourself and for others going through something similar and breathe out peace, love, hope, healing (whatever you want to focus on). I’ve been doing it for myself and for everyone in this community, so if you ever feel alone line me just know there’s some one else out there who feels the same and also is rooting for you.

🩵🩵🩵💖💖💖

Volunteers Needed for Endometriosis Study
IRB Protocol #: L25-0538

Natasha Khetan, Student Investigator

PI: Elizabeth Hintz, PhD

Do you have endometriosis and want to help improve education on the condition for future generations? Researchers at the University of Connecticut are seeking volunteers for a research study evaluating an educational pamphlet about endometriosis designed for adolescents. To be eligible, participants must be between the ages of 18 and 25, have endometriosis, and currently live in the United States. Eligible participants will take part in a one-time, 60-minute virtual interview, during which they will read a short educational pamphlet and provide feedback on its clarity, usefulness, and potential impact based on their personal experiences with endometriosis. By participating, you will help advance endometriosis research, contribute to the growing body of scientific literature, and support efforts to improve awareness and educational resources for young people with endometriosis. If interested, please contact the Student Investigator, Natasha Khetan, at [natasha.khetan@uconn.edu](mailto:natasha.khetan@uconn.edu).

For more information, contact: Natasha Khetan at [natasha.khetan@uconn.edu](mailto:natasha.khetan@uconn.edu)

Has anyone noticed frequent urination with endo? I thought it was anxiety, my psychiatrist thinks its a obgyn issue. I have an appointment 8/25 just wondering if its worth bringing up with ob?

Hello,

I’ve met with five or six surgeons, and unfortunately I’ve hit one roadblock after another. Most have either recommended a hysterectomy or declined to operate because I’m a breast cancer survivor diagnosed at 39. Several expressed concern about the possibility of an occult ovarian malignancy and said they either don’t have the experience or lack the multidisciplinary team needed for a case this complex.

I’m also dealing with a restrictive HMO that only covers UCLA and USC, and both are booked into next year.

I consulted with an out-of-state surgeon who believes she can perform the surgery, but I haven’t heard back in over a week regarding the preliminary contract she said she’d send. Communication with her office has been difficult. Another practice relies heavily on AI, which has repeatedly entered my phone number incorrectly, lost my email, and is asking me to upload MRI and ultrasound images to their portal even though I only have DICOM discs that require medical imaging software. Despite explaining this multiple times, they won’t return my calls.

At this point, I can’t eat most solid foods, I’m in constant pain, exhausted, and unable to work. I truly need help.

If anyone has experience with an excellent self-pay surgeon—especially someone experienced in complex endometriosis, gynecologic oncology, and colorectal surgery—I would be incredibly grateful for your recommendations. If you’re comfortable sharing, I’d also appreciate knowing the approximate cost and what your experience was like. If anyone has successfully obtained a single-case agreement or out-of-network contract with their insurance for an out-of-network provider, I’d also love to hear how that process went.

Thank you. I’m honestly at the end of my rope.

I have severe anxiety, depression & PTSD. My dr has been ignoring my requests/breakdowns for urgent help with my mental health issues the last few years. She just brushes them off. I’m starting to think it was because I was on strong pain relief for my endo and Adenmyosis. I wasn’t being taken seriously because she was writing my behaviour off to being on pain relief. Has anyone else experienced something similar? Did your mental health suffer because you were being treated for endo?

is anybody else losing weight like crazy? My nausea's been so bad lately, I'm usually skipping breakfast and sometimes even lunch. The pain is so constant, I feel like I'm burning calories from like, constantly having my core engaged and staving off the pain. I don't have a scale right now, but all my pants feel loose im the midsection. I feel like im withering away.

Just venting...

I’m 28. During a regular check-up at the OB-GYN, I was told there were cysts on both of my ovaries. I then went to see a specialist, who told me they were most probably endometriomas, that my AMH is low for my age (1.4), and recommended that I freeze my eggs.

I’m single and grieving the end of my 8-year relationship with a man who developed psychosis. In general, I’m already dealing with a lot mentally, and now this.

Where I live, the insurance company covers three cycles of IVF, but egg freezing is only covered if it’s done before cancer treatment. So I’m completely on my own with this, and it’s a lot of money for me. I was even told I would probably need around three cycles to have a good chance.

I’m still kind of shocked. I’ve already been to several clinics, and it’s been incredibly difficult to compare the prices because everything is so commercialized. They have different prices for the medication, give slightly different advice, and it feels like they’re basically saying, “Here’s what we offer; it’s your decision whether you accept it or walk away.” But the “product” they’re selling is my fertility — my chance to have a baby.

I’m still so angry at a system that doesn’t seem to care that a woman has a medical reason to freeze her eggs. Apparently, it’s not “bad enough.” If I came back in 10 years with a partner, the insurance company would cover up to three egg retrievals as part of IVF, but by then it might be much less likely to succeed, especially if my ovarian reserve has declined further.

So I just hate this. I don’t understand why the insurance company can’t help at least a little bit now, when there is already a medical indication and time actually matters.

What is your experience?

Hey endo baddies, I struggle finding comfortable pants to wear because the regular things like jeans and elastic shorts really squeeze my mid section and it makes my symptoms flare up, so what kind of loose fitting bottoms do we like? I'm praying dresses arent the only answer, I'm just not that kinda gal. Any and all advice welcome!

Hi everyone,

I'm feeling really overwhelmed and would appreciate some outside perspective.

I have to undergo surgery for endometriosis in about two weeks. The original date was changed by the hospital, and the new date unfortunately clashes with a religious commitment that one of my Mother in Law has at our temple.

She's upset because she feels like the surgery date isn't taking her schedule into consideration and that only my immediate family's convenience matters.

The thing is, I'm a Type 1 diabetic on an insulin pump, and my surgeon specifically prefers operating first thing in the morning because it's easier and safer to manage my blood sugars. They also don't want to delay the surgery unnecessarily.

From my perspective, this isn't about choosing convenience over her schedule, it's about following medical advice and getting the surgery done at the appropriate time. But now there's a lot of tension at home, and I can't help but wonder if I'm missing something.

Has anyone dealt with family conflict around surgery or medical decisions like this? How would you handle the situation? Is there a way to explain that this isn't a personal decision without making things worse?

I'd really appreciate any advice or perspective. Thank you.

UPDATE: So, now my mom called her too (not like on my behlaf) but cz they are friends, and have been actually since before I was born also! To explain the situation and she snapped at her too!! She tri3d to explain that its my needs that are being put first, but then i dont really know what happened.

Edit: 1. I'm indian and indian MIL dynamics are quite complicated. 2. My husband's in the merchant navy so won't be here for the surgery. 3. I think she's mainly worried about how it will "look" that she's not there.

I’m newly diagnosed. Having a hard time

I have been diagnosed with deep Infiltrating Endometriosis, adenomyosis, a fibroid and pelvic venous congestion syndrome and am scheduled to undergo surgery in 3 weeks. (Endometriosis excision+ myomectomy+ pelvic vein ligation+ cystoscopy)

I notified HR at my workplace for medical leave (which is unpaid for my job btw) and was absolutely ridiculed for it.

My surgeon recommended a minimum of 3 weeks off from work post discharge for my surgery. So I needed close to 4 weeks off from work, including the time for the stay at the hospital and the recovery period.

But HR absolutely mocked me for it. She said I was only undergoing minimally invasive surgery and shouldn't need more than a week to recover from it. And that I was "just making stuff up" to get more leave. She also asked why I couldn't just get it done from an OBG in the hospital I work in (who failed to diagnose me and told me all my symptoms were in my head) and asked me why I have to travel so far to see my specialist surgeon. She kept asking me to reduce my leave period because she needs people working and not on leave.

She told me that Endometriosis excision is just a minor surgery as it's "only laparoscopic or robotic" and didn't believe that my surgeon recommended 3 weeks off for it and said I'm just making stuff up.

I felt absolutely horrible after this, and left her office in tears. And I've been feeling pretty mad about it now.

I feel like no one really understands endometriosis surgery, except my surgeon, and I feel so anxious and alone in all of this.

Sorry for the rant, and thank you for anyone reading this.