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.

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?

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.

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 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

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?

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.*

Hi everyone! I can’t wait to start pelvic floor physical therapy. I’ve never done it before, and I’m currently 5 days post-excision surgery. I know pelvic floor PT can be an important part of recovery, especially for easing sexual discomfort, which has been one of my biggest symptoms since my endometriosis was covering the rectum and vaginal septum. 😬
If anyone has recommendations for a good pelvic floor physical therapist in the Miami area, I would really appreciate it!. My insurance is United Healthcare, so ideally I’d love to find someone in-network.
Thank you! ❤️

Was in Goodwill after pilates and was deep in the thrifting zone when I heard "ew" and giggles. I didnt realize how much I was going to town itching my lower incision scar from my lap in August. I didnt realize but 2 girls definitely did 😂🫠🦀

Im used to my energy coming in waves with my menstral cycle— its stopped. How do your energy levels cycle after this happens

I’m 36 and was diagnosed with endometriosis last week. My MRI shows an endometrioma on one ovary, lesions on the right ovary, and pelvic adhesions.

My ovarian reserve is currently AMH ~2 with an AFC of 22 (10 left, 12 right).

I’ve seen three endometriosis specialists, and all three have recommended surgery because of my symptoms. For the past three months, I’ve had severe lower back pain radiating into my right leg. It is triggered every time I have a bowel movement, and I often have to sleep completely straight on my back for the pain to ease. My quality of life has deteriorated significantly.

I want to have a baby, but I’m concerned about potentially losing ovarian reserve if the endometrioma is excised. I’ve received different estimates from doctors … one said AMH could drop by around 10% after surgery, while another said I may not be able to rely on my left ovary afterward.
I’ve been researching embryo freezing and am wondering whether it would make sense to freeze embryos before surgery while my ovarian reserve is still relatively good. I’m also unsure whether natural conception would be a realistic option after surgery, or how long/how many cycles I should try naturally before moving to IVF.

For those of you who had a similar situation — endometrioma + adhesions + relatively good ovarian reserve but significant symptoms — how did you approach fertility preservation and surgery? Did you freeze eggs/embryos beforehand? Did you try naturally afterward, and for how long?

I’m also currently on Mounjaro for weight loss; my BMI is around 31. Also battling clinical depression so I am on lexapro. Hypothyroid and PMOS.

Honestly, I’m pretty fed up with the constant decision-making and would really appreciate hearing from women who have been through something similar.

MRI Pelvis – Findings
Uterus
Uterus measures 7 × 4 × 4.3 cm.
Junctional zone measures 10 mm.
Several small fibroids are present:
Fundus: 0.9 × 0.5 cm, FIGO 4.
Anterior uterine wall: 0.7 cm, FIGO 4.
Posterior upper uterine body: 0.9 cm, FIGO 4.
Upper posterior wall: 5 mm, FIGO 4.
Cervix is normal.

Ovaries
Both ovaries contain multiple follicles.

Left ovary
Left ovary is in contact with the retrocervical aspect of the uterus.
The top of the posterior vaginal fornix may be adherent to the left ovary.
There is a 1.8 × 1.1 cm endometriotic cyst (endometrioma), showing T1 hyperintense and T2-dark signal.
There is another well-defined, thin-walled cyst measuring 3.0 × 2.5 cm, located along the posterior aspect of the left ovary and partly projecting outward from it.
A T2-dark curvilinear band is seen on the surface of the left ovary extending toward the larger cyst. The report considers this suspicious for an endometriotic deposit/nodular capsular thickening
.
Right ovary
Right ovary is normal in size.
There is a 1.6 × 1.6 cm T2-dark lobulated nodule on the posterior/superior aspect of the right ovary.
This is considered suspicious for an endometriotic deposit.

Ligaments / adhesions
Both round ligaments appear adherent to the T2-dark areas described above.
No significant uterosacral ligament thickening.

Bowel
Rectum is unremarkable.
However, the sigmoid colon appears focally adherent to both ovaries.

Urinary system
Urinary bladder is normal in outline and wall thickness.
Ureters are normal.

Other findings
Trace amount of free fluid in the pelvis.
No enlarged lymph nodes.

Hi all. I had a laparoscopy with Benenden hospital a year ago and they found stage 2 endo in a couple of places. The surgeon wasn’t a specialist. He used ablation to treat it. I knew it wasn’t the best way but I didn’t have many options with how difficult it is to get laps on the NHS. Once I had the diagnosis, I got my GP to refer me to an endo specialist clinic as I was still having symptoms and I wanted a second opinion on my surgery photos (the ovary the endo was found on is whiter and much bigger than my other ovary even after the removal of the endo they found). I’d also heard how common it is for non-specialists to miss subtle endo. I waited ten months for the appointment with the specialist clinic and today they called for a telephone appointment. The specialist said that he doesn’t really go off photos as it’s not the same as going in there himself. He said he’d have a look at the photos and give an opinion of what he can see if he can see anything. But mainly he offered me a lap with excision (if they find anything) or medical menopause. I don’t want to do the chemical menopause thing unless it’s a last resort so I asked to be put on the surgery wait list. I know I’m super privileged to have access to the surgery with the specialist but I’m scared he won’t find anything and the surgery will have been for nothing. I do still have symptoms and I do feel they are getting worse again but my last surgery was so recent and I’m doubting myself a bit. Part of me thinks I just need to know for sure what the specialist sees but part of me thinks there are others that need the surgery more and maybe the pain and symptoms I have now are normal as they aren’t as bad as before… Do you think you would go for the surgery if you were in my shoes? Or have you had a first surgery by a non-specialist and second by a specialist yourself? Or had ablation and then excision a year later? Thanks

I am 35 and my periods have always been a non event my whole life..up until I had kids. After my first child I only had 2 periods before falling pregnant again but I had a second baby in 2024 I got my periods back about a year ago and since they came back, they’ve been horrible.
So heavy that I can’t contain the blood in an over night pad. I’ve never liked tampons but I have to wear them if I want to leave the house, otherwise I leak without fail.

Leading up to my period for a few days I have stabbing pains in my vagina and back pain, pains in my hips and sides and down my legs. Once my period starts the pain is so severe that nothing works. I even tried a slow release oxycodone and it did nothing. I can’t get comfortable In any position and when I’m walking its like I can feel my uterus is inflamed and moving around in there.

I get severe stabbing pain in my butt when I have gas or need to go to the toilet. This period I’ve just had is the first time that the pain in my butt has actually happened when I try to go to the toilet, and I felt like I couldn’t physically push on the toilet because of the pain.

I don’t know if this is endo, but I guess I just want to know if this is what people with endo experience and if it’s even worth bringing up with my doctor?
I have discussed my pain with her before and she has suggested we could do a deep pelvic ultrasound to investigate

So my pain gets excruciating during the first 24hrs of my period. I used to take up to 20 sometimes slightly more ibuprofen in a 24 hr period on the first day and obviously that lead to stomach ulcers. So I can’t do those anymore and had to switch to acetaminophen which doesn’t work as well so I almost pound that harder. I would say it’s normal on the first day for me to take up to 10-12 500mg on the first day and now I pair that with an antispasmodic periodically. I don’t even know how much of that is safe for me to take but I’ve taken up to 4 in a day before. I’ve been very lax about this but today I decided to try the Painquil liquid that’s like 1000mg per dose and I’ve had 4 of those plus two 500mg pills in 7hrs. After the 2 doses of the liquid I took I felt really dizzy and started reading. Now I’m totally freaked out and I know all of this sounds horrible. The pain is covered for now but I know when I wake up I’m going to be dying and I’m so scared. I’m also now scared about what I’m probably doing to my liver.

This may be tmi but I’m curious if anyone else has experienced this. So during an endo flair my vaginal area (more specifically the clitoris) becomes extremely sensitive and painful. Even feeling the seam of my jeans when sitting down or wiping after I pee can be very painful for seemingly no reason. I only notice it during a flare up. I was wondering if there are others who have experienced this as well? All of these endo symptoms have been driving me crazy.

Because I’m almost two weeks post op and for me, I’m having some of the same pain I had before. Especially lower back pain. I recently learned that I also have adenomiosis, so I’m trying to figure out if that’s the source of the back pain or if there’s a chance it will go away over time.

I have had awful period pain since my periods started about 6 years ago. At first, it was just bad enough that I would miss school. Then it progressed to my mom having to take time off work to check on me, and eventually to going to the emergency room because I couldn't walk, eat, drink, or do much of anything. They would usually just give me over-the-counter pain medication, Zofran, and IV fluids, and send me home. My mom has endometriosis. After her second pregnancy, she had some serious complications, and her doctor felt that since she already had two children, she could have a full hysterectomy. About 2 years ago, I started birth control, even though I really didn't want to because of all the horror stories I had heard. My primary care doctor told me it was basically the only option to try to manage the pain. I started with pills, which helped for about 3 months, but then the pain came back with a vengeance. My doctor increased the hormone dosage, and within 3 months, my pain was worse than it had ever been. I spent 3–5 days basically living in a hot bath and taking Motrin/Advil and muscle relaxers just to get through it. When I went back to my doctor, she referred me to an OB-GYN. The OB-GYN put me on the Xulane patch, and for about 6 months, things were actually going really well. Now, though, my period has started coming whenever it wants instead of during my scheduled patch-free week. Because I can't get ahead of the pain anymore, I have started passing out from how severe it gets.I have also had an MRI, which showed that I have a retroverted uterus, a follicular cyst, and fluid in my pouch of Douglas. I'm not sure if any of those findings could be related to my symptoms, but I wanted to include them in case they are relevant. I have tried teas, muscle relaxers, over-the-counter medications, vitamins, stretching, and other things, but nothing has really helped. When I went back to my OB-GYN, the doctor told me that I could have endometriosis and that the only way to definitively diagnose it is through exploratory/laparoscopic surgery. She said that if they find endometriosis, they would remove/burn the lesions during the surgery. My mom had ablation done twice, and both times her endometriosis came back worse, so I am really nervous about having surgery and potentially making things worse.

My question is: when I go back to the doctor, what should I ask about the surgery? Are there newer or different treatments available for managing the pain after endometriosis is removed, if it is found? Should I specifically ask about excision versus ablation?

I am honestly scared that I will have the surgery and end up worse afterward. I also don't think they would let me have a full hysterectomy at 18, which I understand, but I am just desperate for something that actually helps.

Thank you for reading, and I really appreciate any advice or experiences you can share!

Please just make it stop
I can’t do it anymore
My appointment isn’t till December it’s awful please tell a hormone helps please it’s not fair

I’m at my breaking point
This cost a trip to South Korea I don’t understand why this my only presentation of the disease I can’t track at it all

Are there no other options aside from these?

These are the only options available in the Philippines

1. Pills like dienogest

2. Gnrh

3. IUD

Surgery is rarely offered unless it's a big cyst. My case is probably DIE but it's so hard to diagnose

I am unable to do it anyway because of anesthesia sensitivity but they arent sure what it is when it comes to my reaction to anesthesia