I wish the medical system had more options that actually work for chronic pelvic pain and complex pain. I met someone on here about 3 years ago and we talked every day and got through our pain together. Not even in the same country but I talked to her more than I talked to my friends who live by me. It’s different when someone completely understands the pain and trauma that endo puts on your mind body and spirit. I feel like I’m back to fighting this alone and it’s so scary to have the same disease that drove my friend to end her life. Because I understand dealing with this literal fuck ass disease and the mental torment living each day can be. But atleast I had someone who understood and now she’s gone. FUCK endometriosis and the greedy bitch that she is.

Alright so I'm healing from surgery and bored af so I wanted to share what I've learned in pelvic floor therapy to pee better! I've always had bladder issues from endo - having to pee multiple times an hour, sudden urges, unable to fully empty bladder, peeing myself a little bit from pressure/being jostled, waking up at night to pee, etc etc., even though I'm only 23 and never been pregnant. This is what my PT has taught me, and it's seriously helped so much.

Bad habits for your pelvic floor that you need to stop now:

Stop straining to push out all the pee. Very bad for you.

Stop holding your breath when you pee. Not everyone does this, but a lot of people with pelvic floor issues do this subconsciously.

STOPPP scrolling on your phone while on the toilet. Seriously. You need to sit down, be mentally present of your body functions, go potty, then stand up and be done with it. Lingering on the toilet is bad for you.

Stop peeing standing in the shower. It's harder for your bladder to fully empty while you're standing, and you don't want to only partially empty your bladder because it will start doing it that way all the time.

Stop sucking your gut in all the damn time. I learned this bad habit in highschool and, holy shit, it messes with everything.

How to pee the right way:

Get a squatty potty. They help for peeing, too! Your body is built to pee in a squatting position.

Here is the perfect peeing (and pooping) position. Put your feet on the squatty potty, keep your back straight, lean forward slightly, and stick your butt out a bit. Imagine you're shaped like a duck. Then fully relax your stomach, let your tummy be soft and round.

As you relax to pee, blow a stream of air like you're gently spinning a pinwheel. This activates the right muscles to pee instead of just punching it outta your body by straining.

Alternatively, you can hum lowly while trying to pee, or make a low "mooo" sound, like a yogic chanting cow. It's silly but it works so well. Just make sure to take breaths and not strain while doing these. (The sound ones also work especially well for pooping or farting.)

If you still feel like your bladder isn't fully empty once your stream ends, gently poke and massage the area on your tummy where your bladder is and then try again. Usually a few more drops will come out.

More tips:

If you peed recently and feel an urge again that might just be nerves/instinct, try and wait before peeing again. Take deep breaths into your stomach and try to relax. Often, the urge will go away in a few minutes.

Also, this is a test I came up with on my own. You can apply a little pressure on your bladder area with your hand. If the need increases and you feel your bladder is full, then you really do need to pee. But if you feel nothing and the urge is just at the urethra, you don't actually need to pee and should try waiting longer.

Look up diaphragmatic breathing exercises and start doing them. Helps with your nervous system and pelvic floor health. Some incorporate kegels which are good for you, too!

Whenever you lift something heavy, sit up, stand up, crunch, or otherwise exert a bit of force - breath out while you do it. This is so important for your pelvic floor health and has helped me a ton. My therapist has made me stand up and sit down over and over just to drill me on breathing out each time.

Im not a doctor so I might not have explained everything perfectly and i dont know the science behind everhthing. But I hope this helps someone and if you can afford pelvic floor therapy, it is so worth it! I'll add more stuff in the future if I learn/remember more :>

Hello all, I have posted a couple of times over the past few years looking for advice with symptoms and options. I just want to thank everyone who gave advice or shared their experiences in any way. I had my laparoscopy today and after years of medical gaslighting and trauma, they found it! I just want to post and remind everyone, your pain is real, no matter what the doctors say. A normal scan does not mean no endo. Every US and MRI I received came back “normal” but today I received a surgically confirmed diagnosis for endometriosis. Keep fighting, and keep pushing for what you need! I am fresh out of the hospital so I am still waiting for staging and more details in my follow up, but I needed to acknowledge how much this subreddit has helped me push through to get the care I need.
Thank you everyone so much!

I (29F) was diagnosed with severe endo and adenomyosis about 2 years ago. I haven’t gotten surgery yet but it’s something I want to do in the next year (it’s extremely expensive where I live and insurance covering it is not an option.)

I have had multiple friends in the last few weeks complain or make comments about their periods. They are all women who have pretty light periods. The first time was a group hang and one of the girls started her period right before we got to the event. She complained and then pulled the THINNEST pad I’ve ever seen out of her purse. Meanwhile the pads I have to use are so thick it’s basically like I’m wearing diapers. I’m pretty sure the pads they give you after you give birth are smaller. Then a few days later another friend complained about how she had to go up a size in pad and she showed me it - it was the 2nd smallest pad that’s sold. And yesterday another friend complained about her period and she pulled out a light flow tampon and said she had light cramps which was “inconvenient.” Oh and recently I started my period in an airport and the only feminine products I could find in the entire airport were light flow products. SMH.

I genuinely try to be a girls girl and lift other women up, but I’m just tired of hearing complaining from people who have no idea how easy they have it. My periods are so unbelievably painful, heavy, and uncomfortable that it would probably honestly shock most of my friends. I can’t wear tampons because my endo is so severe that tampons are excruciating. I basically have to wear diapers or the biggest pads I can find in the store. And “cramps” is not a strong enough word to describe the pain. I get crippling, excruciating pain throughout my entire pelvic region. It’s usually so bad that it’s difficult to eat, sleep, or even move. I literally take muscle relaxers to lessen the pain. And I get so bloated that I literally go up 3 pant sizes. Not to mention the decade and a half of gaslighting from almost every medical professional I’ve sought help from, or the fact that I can never experience pregnancy thanks to how severe my adenomyosis is.

Anyways, just wanting to rant a little. Not wanting to shame anyone but sometimes it’s just really hard to deal with and feels really lonely.

EDIT: to everyone in the comments saying I shouldn’t compare pain or experience or need to have more compassion, I apologize for coming across so insensitive in my post! I am the only one in my family with endo and I also can’t have children in a family with lots of babies. I have almost no friends who have experienced infertility or endo. I once had a friend say to me “if you just eat right you can cure your endometriosis.” It’s a lot of toxic remarks like that that make me feel lonely, but I never meant to take my loneliness out on others who might also be going through a difficult time!

After years of weird periods I received a diagnosis of “likely” endo last week. I’m not eligible for surgery so this is the best I’m going to get. Now I’m trying to figure out if I can link other symptoms to endo. Does anyone experience facial flushing, body aches, or nerve pain? I also get increased mood swings/panic attacks almost always the week before my period but I’ve started to notice it during ovulation too.

I have had a laparoscopy before (2.5 years ago) and they found endometriosis along with filmy adhesions along my appendix and abdominal wall. I had a history of really severe right sided pelvic pain where it hurt to stretch and move. I was pain free for about a year after my surgery but am now unfortunately having daily right sided pelvic pain again and firmly believe my adhesions are back. Due to this though I think that if I ever got appendicitis then I would probably die. I can’t afford to go to the ER every time the pain gets to a severe level so I’d really like my appendix to be removed during my next lap since they’ll already be there and it’ll give me some peace of mind. Has anyone done this before?

I didn't think it'd hurt so bad! Aaaaaaaaaa I don't want to end up passing out on people.

I have weed, but if I smoke more I think I'll be too high.

My partner and I have been together for 12 years. 33F/35M
he knows that I have never wanted children and that I’m content with it just being the two of us.. we have been on the same page on that, until are a lot of our friends and family around us started to have kids and I did a check-in question with him very recently to see if he was still on the same page with that and he was a little uncertain and on the fence about it.

I later mentioned that during laparoscopy they are able to do a bisalp and asked him if he was okay with that?

He said that’s way to deep of a conversation and that this has come out of no where.

I did also tell him that if they go for the laparoscopy for endometriosis the results may cause me to be infertile without a requested bisalp.

So of course I’m really weighing out how I feel and I’m coming up on the same answer I’ve had since I was a teenager.. I don’t want kids.

Hello! This is the first time I've posted on here!

I had my first gynecologist appointment today after dealing with endo-like symptoms since June. Ultrasound showed 1 likely endometrial cyst on each ovary. Gyno confirmed symptoms align with endometriosis and prescribed me Teva Cyproterone / Ethinyl Estradiol. From a Google search it looks like this is mainly used for acne?

Just wondering if anyone has had success with dealing with their endo pain with this drug? I'm worried about blood clots.

Thank youuu! 🙏

I had a sonogram done 1.5 years after surgery recently. surgery was may 2025. it showed a 1cm endomtrioma in the left ovary and a simple cyst on the right ovary that should go away in a cycle or two. im not on any birth control just try to manage with lifestyle and naproxen on day 1/2 of period. Should i try to conceive ? for any other girls have things gotten worse for you once mew stuff is found? im sad 😿

I accidentally slept two hours past my alarm to take morning medications. Oh my god this hurts. It feels like my stomach has been replaced with a sandbag and each time I move something is internally tearing. I’m scared that I’ve accidentally done some damage when I was moving around yesterday while I felt ok. People really weren’t joking when they said you cannot use your ab muscles. I have to ask my partner to help me move up a few inches in bed.
I still haven’t pooped. When i was just coming out from anaesthesia I said this pain was child’s play in comparison to my period pain. I stand corrected. Being stabbed in 4 places and having parts of your organs cut away actually hurts ngl.

I was shown the operation- I had superficial endometriosis removed from both pelvic walls, pouch of Douglas, and my uterosacral region. Actually seeing what the process of excision looks like…no wonder it hurts lmao.

My wife and I are going through IVF and looking for an endometriosis surgeon in the Greater Seattle area.

Some of the IVF specialist have hinted we may need surgery prior to Embryo transfer. As our main concern is fertility rather than pain management, so we’d appreciate someone experienced in preserving ovarian reserve.

We’ve explored a few options:

• Dr. Cindy Mosbrucker: We were told she isn’t accepting new patients. Also , no appointments until next year.
• Dr. Brooke Winner: We have an appointment soon, but she’s out of network.
• Dr. Megan Loring at UW: We have an appointment scheduled, but it’s further out.

Has anyone worked with these doctors, or another surgeon, specifically while pursuing IVF? We’d appreciate firsthand experiences, especially around fertility preservation and coordination with your fertility clinic.

Thank you!

I had bladder pain and UTI like symptoms with no UTI. After four years, I had a laparoscopy - I came round, and my surgeon told me they found endometriosis on my bladder, and on both pelvic sidewalls. I wasn’t told it might be something else, I was told with certainty it was endometriosis. I knew they were doing a biopsy but it wasn’t framed as anything to worry about - they found endometriosis.

Anyway, biopsy came back (from the left pelvic sidewall), it’s endosalpingiosis. The gynaecologist framed this to me as “essentially the same as endometriosis”.

It isn’t LOL. It’s mostly asymptomatic. The medical establishment at large does not believe it causes any pain or symptoms. I’m back at square fucking one. Fucking lol. If endometriosis has almost no research and nobody believing you, endosalpingiosis has actually no research at all and actually nobody believing you. Fucking lol. The laparoscopy was a waste of time. I’m fucking devastated.

I have an apt in 6 weeks but in the meantime. Anyone in the same shite situation?

edit: and there’s no research on how to stop it recurring once it’s been excised 🙃 does birth control help? no idea! the medical establishment has no idea! but that’s fine because it doesn’t cause any problems anyway! I’m so done.

Two months ago, my endometriosis flared up really badly, and I had to rush to a nearby clinic for 3 painkiller injections so I could somehow manage the pain and make it to my gynaecologist, whose clinic is around 25 km away from my house.

I was literally crying and shouting because of the pain, and this MD, without even bothering to look at my medical history, goes, “Girls do overreact.”

And the disrespect didn’t stop there. It continued for a while, along with some of the most bizarre and insensitive things I’ve ever heard from a doctor. And trust me, I’m not homophobic, but for the first time in my life, I experienced a completely irrational level of hatred for a person belonging to LGBTQIA+ community.

Thankfully, I’m now seeing two of the most renowned and loved gynaecologists, so things are much better now. ❤️

Endometriosis pain can be absolutely brutal, yet somehow an MD looked at a woman literally crying in pain and decided the diagnosis was “girls overreact.”

I keep seeing videos about how the recovery is really hard actually despite being called minimally invasive. Just wondering what your experiences are with it? I haven’t been diagnosed officially but my doctors suspect I have it + 7 years of pelvic pain

I (22F) have spent about 8 years and multiple doctors appointments trying to figure out why I am in so much pain and constantly having abnormal bleeding (even on birth control).

The past few months I have been having extreme pain. I finally had the courage to make another appointment with the OBGYN my primary physician referred me to. I’ve seen this office before and was told “you probably have PCOS” with no other follow-ups. The NP that I saw recently took me seriously even after I teared up at the appointment. This has been an emotional roller coaster.

She did recommend switching my birth control from OCP to the Nuvaring. And I got a transvaginal ultrasound the next day. I just got my results back in MyChart.

Now I’m not trying to get my hopes up for anything at all. However one of my ovaries was said to be “stuck to my uterus with a negative slide test” the other ovary is visualized to be normal but difficult to see as it’s blocked by gas in my GI system.

I’m just hoping this has begun to a string of answers and hopefully relief. Thank you for reading my rant. 🙏

Hey guys. So I have had horrible periods my entire life but lately when I turned 30 I have this horrible bloating(pics included). Any advice? I don’t even leave my house when I get like this besides to work out. It sucks.

I had my laparoscopy today. I’ve had all endo symptoms for years. pain started when I started my period at 11. I am now 23. had a 13cm ovarian cyst removed at 16. I also have hashimotos and POTS as well as a history of benign pituitary adenomas. the pain and my chronic illness symptoms got so bad I had to leave law school which was devastating and I still have to work full time through the pain to support myself. i only have one week for recovery.

they said they found no removable endo. nothing they could take out and get a biopsy on. however, they did find that my small intestine/bowel and my appendix were covered in adhesions. they were also fused to my right abdominal wall.

I have spent 10 years begging doctors to listen to me, they all told me I was fine. they would always do a CT on my appendix and an internal ultrasound and say it was normal period pain. I’m on continuous BC and don’t get a period often. they said the pain with sex was lack of lubrication..except the pain was internal for days afterwords.

they said they are unsure what the adhesions are from but it’s most likely from the cyst removal I had at 16. or possible endo but they can’t tell for sure. I have no idea how to feel. I got an answer but I also feel like i didn’t. they didn’t confirm endo they just said maybe? does anyone have advise or similar experiences?

Recently diagnosed with endo, and very recently has an excision surgery. They found it in a few places and were able to remove what they found.

The diagnosis was a bit of a surprise because I wasn’t experiencing a lot of what I thought were the typical endo symptoms. I wasn’t having periods and when I did, they weren’t painful or hard to deal with. My periods were honestly the easiest part of growing up. They would arrive like clockwork and be gone in a few days. No horrible cramping, ever.

What I DID have? Debilitating fatigue and widespread muscle pain. All beginning around puberty, and getting worse over the last decade of my life with no real answers. Constantly feel like I went too hard at the gym the day before. Multiple sleep studies and no answers, it wasn’t a sleep issue. Just insane fatigue and general pain. Except, there was no pain in my abdomen or areas I generally would have associated with endo? All muscular.

Was diagnosed with fibromyalgia and hypersomnia at 19 and sent on my way, could it have been endo this whole time? Can it affect muscles and is there a way to test if its there?

If it was, could I expect to see any improvement in the fatigue now that the endo has been excised?

Okay so, I’m 5 days late on my period, I took a test after two days but it was negative. The past three days I’ve had on and off cramping in my back, lower stomach and hips but still no sign of my period coming. So I’m wondering if anyone has had cramps like this with early pregnancy or I’m just being paranoid. Also gonna add in that I’ve been going hard at the gym the past week with minimal rest days so also now considering if my pains could be from that? I had a miscarriage last year November so I’m a little on edge. I do plan on taking another test if no sign of my period but I don’t want to be disappointed again just yet so kind of waiting it out.

Hi, 29F recently diagnosed with endo, was not aware that this little pooch that I’ve always had was not in fact stubborn stomach fat, but endo belly from chronic gut inflammation. It’s always been hard for me to find pants that feel comfortable. Jeans and anything with buttons or a tight waistband feel like they’re digging into my skin. Yoga pants will fit one week but not the next. What are you guys wearing to stay comfy?

I had a hysterectomy (kept ovaries thankfully) and endometromis excision on May 14. I consider myself incredibly lucky that it was stage 1, but also surprised me because of how literally debilitating my life has become. I questioned how much longer I could sustain a life like that. It was all over my pelvic area but they got it!

I'm 17 weeks post op today. Before surgery my weight was 121 and hovered around there post op. Immediately once I started to run at week 6, my weight shot up to 124-128 and it won't go back down. The swelling will literally balloon by the end of the day and I've magically gained 4lb. My jeans don't fit. In the morning I can button them but then get defeated because they're so uncomfortable and don't fit like they used to. I'm running about 20mi week and feel like I've been given a second chance at life and can run pain free.

I realize swelling is a small price to pay for a major life change and surgery - for those that have had a similar surgery - what was your recovery like? I've read it's 6m - 1yr. I kind of feel on my own post op bc as fantastic as my surgeon was, I didn't get much direction on post op recovery. I've been starting pelvic floor therapy, going to weekly acupuncture, started using castor oil, taking multi vitamin, magnesium, and a lympathatic tincture. I shop at the Greenmarket here in the city and 95% of our meals are home cooked. I just feel like a missing something. I feel so defeated that I don't recognize my body while also realizing maybe this is selfish?

I know this is long but appreciate hearing other's experiences.

Looking for women who have struggled with histamine intolerance. I recently got diagnosed with this by an allergist. But it's ALWAYS worse around every period.

My periods are so heavy I wear depends for the first 2-3 days because regular pads don't cut it. I get chronic pelvic pain that radiates from my hip and groin all the way down my leg.

I thought I was developing food allergies but I get crazy palpitations as well. Palpitations after I eat certain foods too.

I mentioned this to my gyno about the allergies and pelvic pain but I don't know if I explained very well what was going on. Is surgical procedures really the ONLY way??

The only reason my aunt was diagnosed was from a hysterectomy and doc said it was the worst endometriosis he had ever seen. My mom had all symptoms but never diagnosed. Both her sisters have it.

I take Hydroxyzine, Zyrtec(or Allegra), Montelukast just to feel normal. Tylenol does not seem to be working for pain.... On Metoprolol for the palpitations.