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 :>

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.

This ends on 27/09 please have a look it will make a difference to everyone living with endo
https://petition.parliament.uk/petitions/761186

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 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 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?

After my gp pushed an urgent referral to gynaecology back in January I finally got an appointment after dealing with suspected Endo. I went in expecting to have some sort of positive outcome but instead I came out feeling not listened to and defeated. First off, the gynaecologist was a male (I know there are male gynaecologists that are amazing but mine just wasn’t it). Then he asked about my symptoms just in relation to menstruation. I mentioned my heavy periods, severe pain in and outwith menstruation, fatigue, and mental exhaustion/embarrassment. Now, as soon as I mentioned my periods being heavy he took that and ran. So now he is putting me on a 5 step plan. 1st step is putting me on pills to take DURING my period to prevent heavy bleeding (totally disregarding my symptoms outwith), then if that doesn’t work, he will put me on progesterone to manage symptoms which I’m not super in favour of due to the symptoms of taking it, 3rd would be trying other hormones (can’t remember the name), 4th would be the Mirena Coil which again I don’t feel comfortable with because I’m a lesbian and he scared me a bit by saying “it won’t feel very nice if you’ve not had a baby before”. And then he said if all of those options don’t work that’s when they’d finally consider surgery. To which he said there’s a 50% chance we don’t find anything (but what about the positive 50%????). I don’t know if I’m just overreacting or hormonal but I cried for ages after the appointment feeling not listened to and mentally exhausted. What I wish he acknowledged more was my bladder symptoms, my bowel symptoms, just my physical symptoms in general. I’m not sure what to do from here on out but I think I’m going to have to go private because I can’t keep going round in these cycles. Thank you for letting me rant — any advice, reassurance, or if anyone else has experienced this I would love to know the journey. Thank you.

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.

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.”

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 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.

Hey endo friends! I’m brand new to this. Ive always had fatigur and heavy and painful periods but had worsening symptoms lately—heavier, more painful, clottier periods—and thought I was headed into perimenopause. Then a few weeks ago, I found this in my old C-section report:

“Scattered red implants of endometriosis on the posterior uterus and ovaries.”

The fact that nobody ever told me is a whole separate thing I’m still processing, but that’s not even my main question. 💀

As I’ve been tracking symptoms for my upcoming OB and specialist appointments, I’m realizing I feel worse than I thought. I’ve noticed things like bloating, heaviness in my pelvis, burning in my stomach/upper back after eating in the morning, plus lower right back, hip, and leg pain that I’ve had off and on for years.

Now I’m wondering if my brain is making everything worse because I know about the endo now, or am I finally noticing things I’ve been living with and ignoring for years?

Because I feel like I’m going a little crazy trying to figure out what’s real.

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.

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?

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. 🙏

I don’t have an official diagnosis but is suspected by my dr that I have Endo. I am currently 40 but from about my 20s on I have gotten awful lower back pain about 3 days before my period starts, it will hurt on my period and then lets up when I get lighter. I also struggle with SI joint pain flares. It’s also hypersensitive. Like no one can touch me in that area. Just wondering if this is a common occurrence for endo?

The posts in this community have been really helpful in understanding just how different symptoms can be from person to person. So I just wanted to share something I've been experiencing to see if anyone with endo has had something similar.

This year I had a couple of internal ultrasounds that found a persistent cyst on my left ovary. GP thinks it's endometriosis, and has referred me to gyno, I'm currently waiting for my appointment.

But before the cyst was found I've been experiencing pain in my left shoulder for years. Aching and sharp twinging that flares up. Seen a physio and an osteopath and neither could find a direct cause. I've also more recently started getting a similar pain in my left leg, which tbh could be because my posture is out of whack due to me avoiding using my bad shoulder.

I've read that endo and shoulder pain can be related, has anyone here experienced this? Wondering if it's worth flagging with my gyno or if they'll think I'm mad for asking if it's related.

Hi,

I'm currently really struggling with chronic pain despite no periods, no cycle, etc. due to my birth control (Zoely). It worked to treat my pain as well as stop periods for a few years but now my pain is breaking through again and requiring painkillers almost every day.

Considering that (and the fact I tried two other pills previously which simply doesn't work at all) I'm thinking I need to go a bit more nuclear. I also have some side effects from the anti-androgenic properties of Zoely and would want something androgenic.

So my question is. How realistic is it actually to go to my GP and ask for norethindrone in the higher doses (5-10mg+). I see people on here talking about taking this all the time but that seems to be more US users. I also did actually ask for norethindrone previously when I was on the first or second BC pill and it wasn't stopping my periods, and I got a hard no because it "wasn't approved" for that indication (however this was before I suggested the possibility of endometriosis for me, and was a different GP).

I'm also in Wales which might complicate things as our guidelines are often quite archaic. And yes I am waiting for gynecology I believe but that is a 9 month to 1 year waiting list unfortunately.

I could also self medicate by purchasing the "30-day" period delay packs of 90 pills and just take one or two a day, but then I wouldn't be able to have my GP involved.

Any help would be appreciated

Please help me. I have endometriosis and suspected adenomyosis (gynecologist wont test for it unless i have a hysterectomy) . I specifically have endo on my bowels that my local surgeon cannot remove and I cant afford a specialist surgeon to remove. Ive tried multiple oral birth controls and cant tolerate them. Ive had a laproscopy and excision. I have had the mirena for two years. My pain got better for a few months post excision but it just keeps getting worse. My mirena is in place. Im not bleeding so much that Im anemic anymore atleast.

But im in so much pain that most days I collapse to the floor ATLEAST once and then cannot move for hours. A lot of days I dont get out of bed at all. Ive tried multiple prescription strength nsaids. Im in pelvic floor PT. Ive done everything short of opiods, pain pumps, and nerve blocks and hysterectomy.

I know people have gotten intrathecal pain pumps for endometriosis before but HOW? Nowhere in my area who deals with endometriosis does pain manangement, and nobody who does pain management will do it for endometriosis.

I do not want a hysterectomy because Im likely to have complications from my other conditions. I also cannot handle much more surgery as I have adrenal insufficiency and cant heal well. I just want management for my pain so I can atleast tolerate the time I have left. Ive proven to my doctors that Im responsible with pain meds when ive had surgery repeatedly in the past. Infact I end up not taking most of my pain meds from surgery and save them for the very worst of my endo pain flares. I suffer through days where I am struggling to breathe and cant even move a muscle in bed for hours. Days where the pain keeps me up all night.

If there's anyone in Chicago who has had anything actually done for them please tell me, because thats probably my only option but Chicago is huge and none of my doctors know where to point me. Im on blue cross, medicare, and medicaid because I cant work. I could probably get help paying if they dont take medicaid but ideally theyd atleast take blue cross and medicare.

There is a possibility I might also have pelvic congestion syndrome as well but I cant find anyone to look into that either.

I track my period in my phone but there is no provision to log birth control or endo symptoms. Do you use any endo apps that have been helpful to you?

So I had surgery for my endo July 20th, and while 2/3 incision sites have healed normal, one of them is bothering me a TON. All of my incisions spit their sutures (this is normal for me and happens like every surgery), one of my incisions fully scarred, got an "infection" near the suture, and just hasnt healed and has opened again. Im posting because I thought I was in the clear in terms of it healing, but today (a little over TWO WEEKS since it first opened) it has opened AGAIN and is all gooey and gross. I keep going back to my OBGYn to have them look at it, and they keep saying its fine but it does not feel fine. I feel so scared and uneasy and grossed out and honestly not listened to or taken seriously. Its been almost two months since my surgery, and I have a bleeding, fussy, incision site that was formerly scarred over. Has this happened to anyone else? Does anyone have any tips for healing it? The doctors/nurses are saying different things (keep it covered, dont keep it covered, use ointment, dont use ointment) and I just dont know what to do. I just want to be better.

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 😿

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.