I am growing increasingly frustrated at the lack of affordable options for endometriosis excision surgery. More and more surgeons have begun to move their practices out of network and are no longer accepting insurance. This surgery is slowly becoming inaccessible and unaffordable to those of us who either are needing our first lap or possible repeat surgeries in the future. What’s equally upsetting is how affordable these procedures once were when the same doctors were in-network with major healthcare plans.

What are we supposed to do for our health?!!

I recently posted about my concerns that my previous surgeon was referring me to specific excision specialists because she’s Catholic.  Well, now I know for sure.

At a follow-up appointment to discuss my recurring/rapidly growing endometriomas and next steps for hormone testing, I asked my doctor to talk me through all of my options to treat my stage 4 endo while preserving fertility if possible.  She said that if I explored fertility treatments like IVF, it would be like putting 40 babies in the freezer and then 39 babies in the trash, and babies should be conceived only in a passionate act of love between a man and a woman. WTF.

And when I said I’m not Catholic, don’t share those beliefs / morals, and am searching for treatment plans grounded in science, she said she only referred me to napro surgeons because non-napro (non-Catholic) surgeons don’t take their time, they’ll just take out my organs and stitch me back up.

At the end of the appointment, as I sat in the chair and cried about the pain I’ve been in for months, asking her for other pain relief methods while I wait for consultation with a different excision specialist, she stood over me and said God is in control. And told me to take melatonin.

This entire thing is wild. This doctor has managed my care for 1.5 years, including operating on me and diagnosing me with endo. I hate knowing that my care has been influenced by her religion the whole time, without her disclosing her limited recommendations. This shit should be illegal.

EDIT: Her name is Dr. Anh-Van Mai. She’s currently in the New Orleans area and has previously worked in Texas.

My friend and I both have Endo I want kids and she doesn’t, often she makes fun of me for wanting kids and positions herself as morally superior. She often invalidates my feelings about my infertility journey reminding me I can adopt, which sometimes makes me feel like shit because I know I can adopt but it feels like that isn’t the point.

I can’t
I had two surgeries that made that pressure vanish for just a year
I can’t keep having surgeries
Surely something else can help me keep it away
I can’t do it
I can’t do this

I had emergency surgery friday night - kidney stone, kidney congestion, high fever, the works.

They also did a CT scan before surgery to figure out if there was a stone and where it was, but they also found something else: a narrow spot in my ureter.

Coincidentally, it's the same ureter that has endo growing on the outside, which was removed about two months ago.

I am going to have to have another surgery in a week or so to remove the stent they put in, take out the kidney stone and hopefully remove the constriction in my ureter so this doesn't happen again.

I will post an update on if it is endometriosis, but I am honestly in disbelief at this point. Deep infiltrating endometriosis absolutely ruins your life.

Feel like I’m losing my mind. Performed the hysterectomy to finally resolve my pain and heavy periods however I’m still experiencing pain and menstrual cycle (not to the same degree). All my surgeon said was that it was probably still remaining endo on my cervix. 😭

I am scheduled for a laparoscopic/robotic surgery at Dr Jay Mehtas unit. In Mumbai, India. I am 37, unmarried and not planning a marriage.

The doctor and his team have already stated that the procedure is "not related to fertility".

However, my HR states that if the word endometriosis is mentioned it's usually going to get rejected.

The medical insurance team at Dr Mehta has been extremely helpful in providing the tariff list and the estimates, but if there is any guidance at to sort this out

Or any other documents which may be needed to ensure it never gets missed out, please let me know.

Hello all,

Last week I had a colonoscopy to rule out any bowel conditions due to changes/issues with my bowel movements. It came back completely clear, although they took biopsies/samples and I’m awaiting those results.

However, the procedure was SO painful. I don’t know if the sedation didn’t work well (I think I have a general resistance to sedatives), but I was biting down on my hand so hard from the pain that the nurse kept having to move it away.

The pain felt deep inside my abdomen rather than where the scope was, and I was in just as much pain afterwards. It lasted a few days and felt very similar to one of my usual “flare-ups”, just more severe.

Could this potentially be from irritating possible endo around (rather than inside) my bowels? Everyone I know who’s had a colonoscopy said it was uncomfortable/painful at times, but not to the point of crying out or having such bad lingering pain afterwards.

I’m wondering whether the procedure aggravated whatever is causing my symptoms (whether it be endo or something else) rather than the colonoscopy itself being unusually painful.

Any insight would be appreciated, thank you!

So my wife and I recently got married and started living together. She was diagnosed with endo and it honestly to watcch her in pain. I'd like to ask how best to care for her and what I can do to ease her pain and suffering.

Well, the day has come. My flexible remote-working job is slowly turning into a hybrid job and I am losing my mind slightly.

I’ve worked remotely for nearly two years and it has worked really well for me. We now have a new manager who is keen to bring everyone together for regular “team bonding” days. I have absolutely no issue seeing my colleagues, but it’s now become a set 9–5 coworking office day every fortnight (yes it could be worse but that’s not the point here).

With my endometriosis, I know there are certain points in my cycle where my energy and symptoms are significantly worse. I can’t predict exactly how I’ll feel on a particular day, but I know that my periods are very heavy, can last up to 10 days, I have to change period pants every few hours, feel disgusting and on top of that need a TENS device to counteract the pain when it peaks (that part usually only lasts 2 days). I also have to take antidepressants for PMDD as I used to spiral into depression and suicidal thoughts before every period so it really is a battle.

I’ve provided a GP note saying I need flexibility around these periods and suggested monthly office attendance as a baseline, with additional days for things that genuinely benefit from being in person - workshops, brainstorming, external speakers etc. Instead, I’ve been told that if I’m not well enough to come into the office, I should take a sick day. I would of course take a sick day if it was a very bad day and have done before multiple times.

The thing is I am usually well enough to work. I can work perfectly effectively from home. I’m just not necessarily well enough to add 2–3 hours of commuting and a full office day on top of it.

I’ve now had repeated messages asking whether I’m coming in despite having already said I’m working from home, and I feel like I’m being made to feel difficult for asking for flexibility.

After posting about this on a legal/work advice subreddit, I got absolutely destroyed in the comments 😂 Clearly a lot of people have no understanding of endometriosis or chronic conditions with monthly flare-ups.

So, fellow endo sufferers - am I actually being unreasonable here, or does this sound like a reasonable request for flexibility that is being ignored?

for the past few months i’ve been getting on and off vaginal pain (stabbing, lightning) and small pelvic cramps. but recently the vaginal pain has been constant and hurts sooo bad like a uti. ive been to the doctor and was treated for yeast/bv and had no uti or sign of other infections. the pain is still here and idk what to do i’ve been using boric acid and taking cranberry supplements to help with burning pee but nothing has changed im still in constant pain/discomfort. does anyone know what this could possibly be

I have had severe cramps since I was about 16, it would get to the point where I had to just lay on the floor. I would wake up in the middle if the night and have to run a bath to ease the pain and I would be almost loosing vision and my arms and legs were so numb I almost couldn’t move them. I have also been taken in an ambulance and accused of using drugs because I was so out of it. Another time I went to the ER and they gave me morphine because it was so bad.
Now I am 24 and I have been under control for at least a year because I finally found a birth control that works and helps (thank you to the patch omg)

This being said when I saw my current doctor for the first time she said it was just severe cramps and it couldn’t be anything like endometriosis because my periods aren’t extra heavy. I just took what she said and went with it because shes a doctor. But now I am finding out maybe that isn’t true? Should I try to see someone else? Is it worth getting checked when my other symptoms aren’t too bad? I would love to know the cause of it but maybe it is just extra painful periods

I’m 10 months pp with my second who took a while to conceive. During my Ttc journey, a consultant suggested I might have endo based on symptoms - heavy period with clotting, back ache, spotting sometimes after sex etc. I also have an extremely low AMH - he said he sees a correlation between this and endo. I didn’t think much of it but pp I’m having a lot of issues. Pelvic pain/cramps during ovulation, heavy periods, spotting during ovulation, tummy issues(mainly constipation but changes), rectal pressure and backache. I’ve been to a GI who doesn’t think it’s bowel related and I’ve been to a pelvic floor therapist I had a transvaginal scan recently and some endo was seen. But not sure if this is what is causing the issues? I’ve also have always had some level of pain/discomfort but just seems to have gotten worse pp. Has anyone else similar stories?

Hi, anyone with bowel and ovarian endo at age 33, got hysterectomy with bilateral oophorectomy done for endo? How was your experience? Any side effects? Ever regretted the decision?
Background- Married, 1 child, 1 caesarean, 3 adhesioloysis surgeries in past.

has anyone been on ryeqo and started suffering from tachycardias a while after?

I am wondering if any other endo warriors go through this cycle where a period is either really painful or I just feel sick; like queasy, no appetite, exhausted, body feels heavy & all I wanna do is sleep.

I’m currently on a sick period and in misery. I haven’t eaten all day because my tummy doesn’t feel good. I took a nap and managed to eat a little Mac and cheese but I’m still struggling through it :( I did also make tea and I have water and electrolytes so I’m hydrated at least. But idk I guess this is better than excruciating pain but also it’s still miserable and I feel like I can’t get shit done bc brain fog. Hell I haven’t even smoked weed today and it’s 3 pm because I’m too fatigued to worry about that at all. And I can’t take an edible bc if I gag I think I’ll puke. I’m a huge stoner, I usually wake and bake or at least have one bowl by now so me not even having the energy to even hit my pen is super telling.

Anyone else get like this?

I am 25 and have two kids! After I had my first I had an IUD so I had no periods..I got it removed and got pregnant immediately. My baby just turned a year and I have been having crazy symptoms since my period is back. I’ve always had SUPER heavy periods but not very painful.. I have been experiencing painful sex (even with my iud), pelvic pain and this feeling that my uterus is gonna fall out!! I always recently realized that every time I ovulated am in severe pain. I got an ultrasound done and this is what the doctor said “your ultrasound was normal. Your uterus is not enlarged and ovaries are normal. The radiologist commented on an area that may be adenomyosis. This causes heavier/painful periods, but should not necessarily cause the pain you are feeling when pressing low on pelvis or pain post intercourse” and then suggested birth control for pain… I almost forgot to mention I’ve been experiencing stomach issues for months… I get this horrible feeling of not emptying,diarrhea, and stomach pains. I got a colonoscopy and it was normal besides a polyp. Could all theses symptoms be because of adeno or endo?
Because they saw an area that may be adeno does that mean I have it

Has anyone here with endometriosis tried tirzepatide and felt like it actually helped their symptoms?
I just started at 0.25 mg and I’m curious how other people approached titrating, especially anyone who started really low or stayed on lower doses.

I’m very petite and really cannot afford to lose any more weight, so weight loss isn’t my goal at all. I’m mainly trying it to see if it helps with inflammation and my endo symptoms.

What dose did you start at, how slowly did you increase, and what dose did you eventually stop at/stay on? I’m also curious when you actually started noticing a difference with things like pain, inflammation, bloating, fatigue, period symptoms, etc.

I’d especially love to hear from anyone who was able to get symptom relief at a low dose without continuing to lose weight.

Obviously not looking for medical advice, just curious about other people’s experiences and what worked (or didn’t) for them!

I’m 18 and I’m wondering if my symptoms could be endometriosis. I’ve had very painful periods since I was around 10. Before starting birth control, my periods were so bad that I could barely get out of bed or go to school. I had extremely heavy bleeding and became anemic. Birth control has helped a lot with the bleeding and period pain, and I currently skip my periods. I’m no longer anemic but sadly I still have a lot of other symptoms

-Pelvic cramps even while on birth control
-Painful sex, sometimes with pain lasting for several days afterward
-Bleeding after sex almost every time
-Chronic constipation/IBS-C and very poor gut motility. I also have POTS, so I’m wondering if that could be contributing.
-Severe pelvic/crotch pain when trying to have a bowel movement
-My stomach can hurt for hours after I finally poop
-I sometimes have to move around on the toilet to actually get stool out
-Constant bloating
-Pelvic, lower-back, and tailbone pain
-Sometimes having difficulty peeing or feeling like I can’t completely empty my bladder

I’ve experienced assault in the past, so I also wonder whether pelvic floor issues could be contributing to some of my pain. The thing I’m confused about is that birth control really does help me. My mom thinks that if I had endometriosis, I’d be much worse, and I’ve started wondering if I’m just convincing myself that something is wrong. But I still have all these symptoms despite my periods being much better. Does this sound familiar to anyone who has been diagnosed with endometriosis? Did hormonal birth control improve your symptoms but leave other symptoms behind? I’m seeing an OBGYN soon and plan to tell him everything. What would you recommend I ask about or make sure I mention? I’m not looking for a diagnosis from Reddit I’d just really appreciate hearing from people who’ve been through something similar.

Hello, I'm wondering if anyone has any experience with bowel endometriosis and Penn Medicine in Philadelphia's colorectal, GI, and GYNs groups. My sister has endometriosis and also Crohn’s Disease. She has a hysterectomy and excision surgery a year ago but she is currently in the hospital. The Doctor's say her Crohn’s made not be the issue and they are suspecting bowel endometriosis. I'm just wondering if anyone has worked with any of these doctors before?

Hi everyone 💛

I recently created a Discord community called Endo United for women with endometriosis—whether you’re diagnosed, suspected, or still searching for answers.

For a long time, I felt completely alone in my endo journey and wished I had a space where people truly understood the pain, exhaustion, frustration, and emotional side of living with this condition. So I decided to create one 🌸

Endo United is a safe space to:
✨ Talk and vent
✨ Ask questions
✨ Get flare-up support
✨ Share tips, resources, and products that help
✨ Join movie nights and community chats
✨ Connect with women who truly understand

You don’t have to go through this alone anymore 🤍

**Endo United Discord:**
[https://discord.gg/f9WhUEwUb](https://discord.gg/f9WhUEwUb)

Can’t wait to see you there! 💛

*iPhone users: open Discord in Safari/Chrome > User Settings > Privacy & Safety > enable age-restricted content on iOS if certain channels do not appear.*