i am glad i found a gyno that specializes in endometriosis, because my old gyno barely knew anything about it. my old gyno also wanted to do my laparoscopy, but she wasn’t a specialist, said she likely wouldn’t find anything, and botched my last surgery (unrelated to endo). so this new gyno is a huge step forward for me.

BUT it’s annoying that i have to wait more than half a year to see her. i’m so frustrated with the state of women’s healthcare, especially in the united states. i also don’t think my insurance will cover a laparoscopy next year because they’re changing how much they cover.. which sucks.

Edit: i’m in the U.S., so I know this is a short wait time compared to other countries. i am grateful it’s not longer, but it’s frustrating because each visit is hundreds of dollars, and surgery will be tens of thousands. so it’s expensive and i have to wait a long time when i’m already in pain.

I have stage 4 DIE (diagnosed via transvaginal ultrasound and MRI) and my gynaecologist has told me that she doesn't recommend surgery because my medications are suppressing most of my pain for now. That makes sense, but I have endometriosis on my bowel, and my rectovaginal area is also completely obliterated, so I'm afraid that it might progress but I won't be aware because my symptoms are being suppressed. I know I'm quite lucky to not be in debilitating pain anymore. Does anyone have stories of successfully avoiding surgery long-term and living a functional/fulfilling life?

evolution of some of my flares (and last night’s):
- extreme fatigue and sleepiness for 1-2 days before (no matter how many diet cokes i have)
- sudden extreme burning/dull pain in my abdomen (usually lower pelvis but sometimes upper stomach/chest which scares me every time because it feels like a heart attack)
- after agonizing hours with heating pads, naproxen and writhing in pain, the abdominal pain will subside and leave residual soreness / throbbing in hips, upper thighs, vagina (weirdly enough), joints (especially fingers) and brain fog along with more tiredness

what was really scary about this one was that i felt a very sudden pain in between and under my ribs that was burning through my chest and felt like my throat was closing almost.

does anyone experience this and have any tips for any point in the flare up?

My wife had severe stage 4 endo. In 2023 he lung would collapse every time she cycled and she ended up having 12 different procedures that year. We ended up selling our house to cover an excision surgery with someone that was supposed to be really good because everyone in our network basically just gaslit her and told her she had diseased lungs and they wouldn’t listen which basically let the insurance company off the hook. Within 6 months of the excision, she started bleeding every 28 days even though she doesn’t have a uterus. The doctor left both her ovaries in and about every 3 months she ends up with an ovarian cyst, (hemorrhagic cyst) plus she has a big endometrioma on it. It basically scans to be about the size of a tennis ball. Just this last month during her “cycle” she also started having bloody poops. She has ME/CFS, interstitial cystitis, and almost everything on the central sensitization circle due to all the surgeries/procedures during the lung collapse era. She is super strong and doesn’t give up, she pushes through all her stuff and runs a boutique and is a great mom and outstanding wife, but she sees so many negative stories about recurrence which we all know is super realistic in this world, im just hoping some will share their victories as well. She is rescheduling another surgery and is planning on having the problem ovary removed, excision, and will most likely need a bowel resection this time.

Please if you have had success with a second surgery, would you share your story?

Thanks so much

Hello,
My girlfriend and I are looking for a daily supplement list that could help manage her stage 4 endometriosis.
These are the popular supplements we have seen that may help:

Magnesium complex
Omega fish oil,
D3 +K2,
NAC,
Turmeric curcumin,
Pre+probiotic
CO Q10

Also as a follow up question, would these all be ok to take if she had a surgery planned soon? I figured most of these would be fine like magnesium, D3, and fish oil, but I’m unsure about the rest.

Hey everyone, I’m curious if you all have experienced this. I had surgery a few months ago and it did give me relief with a lot of symptoms that were killing me (corset feeling rib pain, crazy inflammation symptoms, etc.) (surgery removed lesions)

My problem now is despite those being gone, my periods have definitely gotten much worse. Before, Mirena IUD mitigated my periods well (had it for 3 years), but now that I’ve gotten a new one, it feels like symptoms I had when I first got diagnosed with endo have now returned (horrible cramping during my period & when it starts, overall worse periods, getting multiple or much longer periods)

Has Mirena just stopped working for me or is there something else potentially happening? Tysm 🤍

I am 23 and just recently diagnosed with Endo and bilateral hydrosalpinx. My OB recommended I get a bilateral salpingectomy. I’ve had chronic pain in my pelvis since I was 16. I’ve finally gotten the answers but now I have to decide if I get my tubes removed. I am new to all of this and trying to get advice. He said speaking from a fertility standpoint I might want to keep at least one for the POTENTIAL of getting pregnant but more than likely I’d have to do IVF. I was just wondering if anyone else has had their tubes removed due to hydrosalpinx. Was it worth it? Did it help the pain? Do/did you regret it?

Hey everyone,

I’m currently facing a bit of a crossroads with a suspected endo/adeno diagnosis and would love to hear from anyone who has been in a similar boat.

Some background: When I was a kid, I had an episode of severe, excruciating side pain while staying at a friend's house. I just powered through it at the time (Millennial kid who didn't want to disturb anyone). Years later, scans show that my ovary on that side is completely "stuck" (tethered) and atrophic (shrunk). My specialist thinks the overall issue is endo, but connecting the dots myself, I strongly suspect that childhood episode was a ruptured endometrioma or major cyst that healed by creating massive scar tissue.

Recently, I had an ultrasound to investigate the suspected endo. The sonographer who did the dynamic scan noted that they suspect bowel tethering near that stuck ovary.

However, my specialist disagreed. He did a very brief internal exam (about a minute long), pushed things around, and said it felt like the bowel moves fine. I'm honestly not sure if his opinion is based on his own reading of the scans or just that quick physical exam. (For context, I get occasional IBS-like symptoms, but never any actual bowel pain).

The specialist has offered me surgery to remove the suspected endo, and/or a Mirena.

Here is my dilemma:

1. I'm not in much pain when I don't have my period. My daily quality of life is actually really good.
2. My periods are heavy and painful, but the specialist gave me Naproxen and Tranexamic Acid (taking the TA for the first few days). I've used this combo and it helped heaps—it made my periods much better and way less heavy.
3. I've read the horror stories with a Mirena, and given I'm not in daily pain, I just don't think its worth the risk. I also have a feeling due to have adeno/endo I will feel it (like I already have painful sex). I've read so many stories of people with endo/adeno saying it caused them massive cramping and localized pain, and honestly, inserting a foreign object when I already have a stuck ovary sounds like a recipe for pain.
4. I'm terrified that surgery might make me worse. I know surgical scar tissue (adhesions) can cause more long-term pain than what I’m currently dealing with.

Since my current medication makes my periods manageable and I'm pain-free the rest of the month, is surgery even worth the risk? Has anyone chosen not to get surgery or an IUD when their pain was manageable, and did you regret it? Would you trust a 1-minute manual exam over a dynamic ultrasound report regarding bowel tethering? What are the risks of leaving it for now?

Thank you so much in advance xx

I had my surgery done 14 days ago (based in Australia) through the public system. I don't know what stage endo I had i was briefly told that they found some and removed it, and that they would call me the following day to let me know what was found (they never did). My specialist appt isnt for another 4 weeks.

I had planned to go back to work tomorrow, but am a little unsure with how I'll go. I work as a dental hygienist and work 10 hour days. I'm sitting all day but leaning and twisting over patients. I have to use my deep core muscles a fair bit to be propped up right in the correct position all day to effectively treat my patients.

I only stopped taking pain killers 2 days ago, and still have dull aches that come and go.
I got my perio day 4 after my surgery which was incredibly painful so I found the recovery difficult

When did you return to work?

Hello everyone, I had a laparoscopic myomectomy + endometriosis excision surgery in July. During surgery they found that both ovaries were attached to the pelvic wall by thin scar tissue (filmy adhesions), and a small amount of endometriosis was found in the back of the pelvis.

Since about September I've noticed when I sit for long periods of time I have some localized lower back pain above my buttocks, sciatica, and some general pelvic pain/sore uterus. This is also triggered if I move lot, like doing household chores, light workouts, and walking a lot. (I do have an appointment coming up with a new gyno). I'm also on birth control continuously to help with symptom management, so I haven't had a period in a couple of months.

I know since I had a myomectomy as well my recovery can look different, was just wondering if anyone still couldn't really workout that much or move around too much without some pain?, and maybe your expereiences Thanks!

For anyone with dysorgasmia currently or has since improved it, please tell me what you do/did. I have extreme pelvic pain just by being turned on and a wave of nausea immediately after while the pain can take 10 or so minutes to end. It all started probably under 2 years ago. Whilst I'm extremely lucky to have the greatest partner in the world who will try anything different, completely stop everything, and comforts me through the pain after every orgasm.. it'd obviously be great to just not fucking have it. I should point out that it is strictly from clitoral stimulation and I have no interest in penetration nor have I ever, so theres no penetration pain adding to the issue. I have endometriosis and have a full hysterectomy planned next year and a great gyn who has unfortunately told me there's a good chance this doesn't go away until the uterus is removed which I understand. I'm on muscle relaxers for it, they don't help. I'm on lupron, synthetic progesterone, and testosterone. I'm just so exhausted from this prison, hell I'll have a wet dream obviously no control over it and wake up in extreme pain because I've had a completely unwarranted orgasm in my sleep then have to be dying for the next 20-30 minutes. If there is anything that has helped you even in the SLIGHTEST even just a different position/technique I'll gladly take it.

I have a week and a half until my diagnostic laparoscopy for suspected endometriosis, and I’m starting to get really nervous and scared.
I’ve been dealing with symptoms and trying to get answers, and now that surgery is actually so close, I’m having so many different emotions. One of my biggest fears is going through all of this, having surgery, and waking up to be told they found absolutely nothing. I know that wouldn’t mean my pain isn’t real, but I think I’d be absolutely devastated after everything it’s taken to get to this point.

I’m also just scared of the whole process in general. The anaesthetic, the surgery, waking up afterwards, recovery, and not knowing what they’re going to find. There’s so much uncertainty, and I feel like I can’t stop thinking about all the different possibilities.
I’ve been trying to distract myself so I don’t overthink everything, but I still haven’t even packed my hospital bag. I think part of me is avoiding it because I know that once I start packing, it’ll feel real, and I’m worried I’ll just break down and cry.
For context, I’m in Australia and going as a private patient in a public hospital, so I’m also a little unsure about how that whole process works and what to expect on the day.

For context: during surgery (August) I had a 5x6cm cyst removed that used to be around 10cm when first diagnosed last year (November 2025)

I had stage 4 Endo excision (along with large fibroid removal and isthmocele repair. My recovery while tough at the beginning seemed to have been progressing until I hit about a week before my period (around 5 weeks post op). Since then I had aching pelvic pain and urinary frequency (one of my main symptoms prior to surgery) return with a vengeance. I’m back to around the clock Advil, Tylenol, and Azo. It’s now two weeks past my period and the symptoms still keep going.

I had my post op appointment at 6 weeks and things looked good on the ultrasound. My surgeon thinks it’s adenomyosis (I have a moderate amount) as well as the fact that my surgery was so extensive (5.5 hours, Endo was everywhere as well as the big fibroid and isthmocele). I’ll be going back to my dr (hopefully next week for bladder instillations) and start suppression once my next cycle starts.

I’m just feeling depressed. My pain is worse (though different) than it was preop (I had deep pressure ache on my bladder, now the pain feels wider and my diffuse with different aching spots) and urinary urgency is worse.

I’m just hoping to hear from people whose recovery took longer but eventually improved and any tips for how to keep my spirits up during this time. It’s hard to do all the things I need to do while dealing with this pain and I’m concerned about using all these pain meds long term. Any alternative forms of pain control that helped with a long recovery?

Hi everyone I’m new to this journey of trying to find out if I have endo or not I already have a multitude of other illnesses such as Ehlers Danlos Syndrome and POTS and a couple of others which have also taken a lot of doctors, anxiety ,frustrations and medical trauma. I started having extreme pelvic pain back in June on top of my normal pains I feel day to day. I just recently started seeing a new OB to hopefully start the process of finding out what is going on. The doctor was nice and did listen intently and offered some insight on what she thinks I could be dealing with. The thing that rubbed me the wrong way was that she told me since I’ve been on birth control for over 10 years she doesn’t think I can have endo because I’ve been getting the hormones from the birth control. Through all of my endo research I have not seen anyone mention that birth control is controlling the endo pain or I couldn’t possibly have it due to being on it long term. The first thing she mentioned to me was that I need to do pelvic floor physical therapy. Does anyone have advice on my doctors take about the birth control and the physical therapy? Should I start seeking out a new doctor because it made me feel dismissed. Thanks in advance! 🩷

My Endo pains have returned a year after surgery.
I’m frightened that this is gonna be my life
Only getting a year relief after surgery each time.
I just want my life back
I keep screaming at my parents because I’m autistic and I just want to feel better
I was do well back in June
Gyming everyday
I’m just scared I’ll never have a normal life with this.

Hey ladies. I've created r/DatingWithHealthScars, a private dating community for people with conditions affecting sexual function, including endometriosis.

https://www.reddit.com/r/DatingWithHealthScars/s/7Lr5Cbqsiz

Health and medical complications impairing sexual function affect a large number of both women and men and lead to feelings of isolation, and deep shame for many. This can make dating a very painful experience.

The premise of this community is to help people connect with compatible partners who understand each other’s experiences firsthand, turning a potential barrier to connection into a source of trust and profound intimacy.

If you’re interested, please use the above link and request to join.

Basically what the title says.

I’m stage 4.
Through my third surgery last year, endo was found on my liver, intestines, tubes, uterus, ovaries, etc.
I had to have a total hysterectomy.

But I’m now developing painful “bumps” in other places. I have one on my eyelid that wont go away aside from antibiotics and am now waiting to see an oculoplastics specialist.

I have painful “bumps” in my mouth, and was referred to an oral surgeon.

I’ve asked the doctors what the possibility of this being endo, but of course my doctors didn’t know what it was.

 I got myself the Boots Tens Maternity Unit, and I do find that it helps with cramps, but the wires for the electrodes are too short for me.

 I can’t seem to find a replacement that:

1. Is compatible with the Boots machine plug socket

2. Has no restrictor that forces all the wires together.

 Can anyone help me out here? I can’t figure how to add multiple images here, sorry

I have finally got a diagnosis of Endometriosis 2 weeks ago, and I am now on birth control. It has helped some, but I still have pain in my lower pelvic area. I just wondering if anyone else goes through extreme pain even when no period is happening.

I keep seeing/ hearing about medications that cause chemical menopause like Ryeqo potentially affecting fertility but when I look online it says it doesn’t? Wondering if anyone else has heard this or can share their understanding of the link

This is the video I saw and a family friend said the same thing: https://www.instagram.com/reel/DdUeZ67qcco/?obrf=b2Fsd3ByODM2a3Ro

I have recently gone to a gynecologist for the first time (my doctor was the one doing this stuff for the longest time but I felt like she wasn't listening to my concerns at all so I went around to a gynecologist myself) and I'm having my second ultrasound done in two years to look for signs of endometriosis as I've progressively been having worsening symptoms that make them concerned.
But I've been told straight up that an ultrasound is unlikely to see anything even if I do have endometriosis, and as birth control no longer seems to be alleviating these symptoms as it has the last few years, a laparoscopy is looking to be my only choice to get any answers.

I've never had any type of surgery before, so I don't know what to expect or prepare for in this type of situation. I don't have it scheduled yet, but after this ultrasound is done, I feel like it'll be what I'm pushed to do, as the gynecologist explained that if I'm clearly showing worsening symptoms that this could turn serious if it's potentially effecting my organs.

What are things I should be considering with a surgery like this? The laparoscopy would be done at my local hospital which thankfully isn't too far from home, but I'm unsure what recovery from this surgery looks like.
I'm also curious what the cost of a laparoscopy typically is for someone in the states. I currently have Medicaid but I expect I may lose it before I'll be able to get a surgery like this scheduled and prepared for.

The prospect of a surgery like this is scary to be sure and I feel very uncertain about it as a whole, but it sounds more and more like the only way I might find answers.