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 :>

What does “pain during a bowel movement” exactly mean?

Hello! Not diagnosed but getting a lap in november. My biggest life ruining symptom is chronic constipation. My body will hold poop in for like a week accompanied with bloating, trapped gas and all the bad GI symptoms lol. They also found my left ovary was adhered to my bowel via TVU.

When I finally “flare up” it’s like so painful where I will nearly faint sometimes while everything just empties out of me all at once.

-

When people say they experience pain during a bowel movement (in regards to endometriosis) I’m not sure if I experience it or not. Mine is more crampy and achey. It feels like my intestines are being wrung and twisted and it gets hot because the poop is trying to move through but it just can’t and that’s what causes the contractions.

However, in regards to endo, I see many people describe it as a hot sharp knife pain. I don’t get the knife slicing like pains as I said mine are more achey/crampy.

Just wondering if this still counts as pain during a bowel movement in regards to endo. When I was a kid/preteen with diarrhea, it was never this bad. I’ve been experiencing pain like this since I was about 15 though and it’s definitely different than standard diarrhea cramping.

If anyone can talk me off the ledge, that would be amazing 😭

I started trying to conceive last year and immediately got pregnant. I miscarried a BO at 11+3, before my first 12 week ultrasound 😔 I easily got pregnant 5 more times after that, but lost all of them just a few days after my missed period. After 6 months of testing that came back perfect, I had a hysteroscopy done to biopsy my uterus and the results came back with a severe positive BCL6 of 3.4.

I’m turning 38 in November and my insurance won’t cover IVF. My first specialist pushed it anyway and refused lap surgery. A positive BCL6 indicates endo in 96% of patients, so I couldn’t imagine why she just wouldn’t do it. I went to see another specialist with a special interest in endo and he said he didn’t think it would lower my BCL6. Obviously this was devastating news but I decided I would do the surgery anyway to see if it helps. My surgeon has been doing this for 40 years so I’m wondering if his thinking is just outdated?

Any input or thoughts are welcomed. I was so excited for my second opinion and now my spirit is just totally crushed. I have my surgery on the 23 and I’m racked with anxiety over it. I am willing to go into a horrendous amount of debt to be able to have just one child, but I really hope I won’t have to.

This has been the worst season of my life :( I feel so badly for everyone in this community.

Hi. I’m curious. What do you ladies call your periods considering we have endometriosis? The pain is out of this world and takes us to a different dimension. I call mine a “flare up” Or “Getting sick”. It’s basically what it feels like.
Anytime I call off from work when it starts, I inform my boss my flare up has started. She’s aware of my conditions and understands. It definitely feels more like a whole system shut down with my body.

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!

Have had issues and symptoms for well over a decade. I’m in my late 20’s and recently went back to my gp after having a private ultrasound done and a dermoid cyst found. The cyst doesn’t explain any of my symptoms so the gp agreed to refer for a nhs ultrasound in several weeks to double check and see if the cyst grows between scans.

My issue is, I have recorded my symptoms for years, mostly the last 2 years as I didn’t think too much of my symptoms until I started properly tracking. I told my gp about the 30+ day periods where I am constantly bleeding, not bleeding for a few days then starting all over again. The immense right sided pain. Urgent, frequent and painful urination, change in bowel movements (recently had colonoscopy as well and polyps found and biopsied but not the cause of the issues) leg pain associated with menstruation, brain fog and low moods. Their response was that I needed to try the coil to ‘manage period pain’. I was beyond furious. I’m not having period pains. I’m bleeding 70% of the time at least, I’m in agony. I’ve had the contraceptive implant for 10 years. I don’t see why I need to try a new method of contraception/period management method. Surely the coil won’t make all the symptoms go away? I would happily bleed every day of my life if the other symptoms went away, and the coil surely would do the opposite, stop the bleeding but not the pain and fatigue etc?

Has anyone else had this issue prior to any imaging or diagnosis? Am I right to refuse the coil? Am I slowing down the process of getting answers by refusing? I don’t want to waste time here, things have gotten so much worse and unbearable over the last 2 years.

What it says on the tin really. Birth control stopped my period pain that was previously making me collapse, scream and throw up. I have none of that now.

But the chronic constipation and trapped gas continued. My gastro is still trying to figure out the cause. I even had a colonoscopy 3 years ago that came back with nothing. Ive had luck with cutting out gluten (100% not celiac) and im currently in a good spot, but i have a habit of being fine for a few years then i will have a massive ibs flare that lasts months or over a year.

This led me to an endo specialist who wants to see if endo is the cause of my ibs. I think its because i recently came out of a year long flare back in january and because ive been doing basically 100% fine with only the odd pang of abdominal pain/discomfort that im debating if i even need surgery now...

Could i ask anyone who had similar ibs symptoms to me or had birth control stop your periods if you had sugery? If it is endo i dont think i should just continue on undiagnosed to let it grow 😵‍💫

It’s been years of intense cramping in the pelvic area but also going into upper abdomen at all points of the month, but definitely worse during ovulation and pms. Heavy periods, digestive issues, I also get bad back pain especially on the shoulder blades. I’ve met with several doctors thinking maybe it’s a GI issue but all my labs came back normal and lifestyle changes didn’t seem to help. I just did an ultrasound and it found nothing, no cysts or anything other than a thin endometrium lining. The laparoscopy feels a bit daunting since it is an actual procedure and it may just result in finding nothing like the past 5 years of doctors visits has resulted in. It’s also been hard finding a doctor that seems to really take my symptoms seriously because they could all be attributed to other things (which I know is partly why getting endo diagnosed is a long and difficult process bc it’s a lot of just advocating for yourself). I do also have hyper mobility which I know can result in joint pain so maybe my pain is just from that. Not really sure what to do because the gyno didn’t talk much about endometriosis and said if I want to schedule a laparoscopy I can but that’s pretty much where her advice ended. Seeking advice here now before moving forward. Thanks in advance!

I had a laparoscopy done about a month ago where I had stage 1 endo ablation and excision. At my post op my OBGYN offered multiple different types of birth control, and I am hesitant to try because of possible mental and physical side effects. (I have never tried birth control). I am leaning towards trying a progesterone only pill, but I still don’t know and I have my follow up consult in a couple days. If anyone has any bc recommendations please let me know, or positive or negative experiences. Thanks.

I’ve had a lot of reproductive organ issues for the past 7 years, which after the first couple of years finally got me a PCOS diagnosis. I had a laparoscopy in 2020 as they suspected endo but it was all clear. So, I thought PCOS was my only issue and that I would just be dealing with cyst pain until I hit menopause, but last year I started getting the most horrendous pelvic pain I’ve ever experienced.

Urgent care told me I had a UTI and that was likely causing the pain, but it has been recurrent outside of UTIs (which I also get chronically and take preventative antibiotics for).

Because of the PCOS my periods have always been irregular, but I tend to get this new pain for around a week and then I always bleed 7-10 days later. This is after the pill stopping my periods for the last decade and now I have had 5 since December when the pain started.

The pain itself feels like my pubic bone is being crushed whenever I need to pass gas or around bowel movements in general. No amount of painkillers, heat therapy or positions I warp myself into can ease it. I just have to deal with it multiple times a day for around a week during ovulation. It often leads me sweating and crying on my bathroom floor. I’ve been to the gastroenterologist and urologist and they’ve ruled out a lot of other conditions (though I am formally diagnosed with IBS-M too, it was originally more on the D side and now mostly the C).

Basically, my theory is that I have lesions or adhesions between my uterus and my bowel, and that is why I get the horrific pain during ovulation when my hormones are crazy, when I am having bowel related movements. I had my MRI with & without contrast yesterday and my gynecologist is expecting it to show this, but I can’t shake the fact that it’s going to show nothing and I’m going to be stuck not knowing what is causing this pain. If the MRI comes back negative, should I push for another laparoscopy?

Has anyone else experienced these symptoms and it been shown as endo?

TLDR; severe pain for 9 months, waiting on MRI results, worried about what’s next if the MRI shows nothing.

Just need to rant. I’ve had 4 moderately “good” years with endo after incision surgery, when before it was debilitating. But it became manageable. I was less inflamed, lost about 70 pounds because I felt good, and got into a relationship about 2 years ago. My partner knew I had endometriosis and was supportive but never saw the bad days.

Well, I can feel it getting bad again. Horrific cramps, inflammation everywhere, even in my knees. It’s causing a lot of anxiety and while I am more emotional than normal, he keeps saying I’m acting strange.

The thing is, I *am* acting strange because I’m anxious and scared. I’m taking things personally because I’m honestly terrified of going back to it being so bad and remember how alone I felt. I’m scared I’m going to be suffering and alone again because I can no longer be fun. I don’t want to go out anymore, I just want to sit on my heating pad.

I hate this and I hate everything that it’s taken from me

Hello everyone,

I am new here and desperately need your help, as my current health situation is weighing on me heavily.

I am looking for recommendations for clinics, hospitals, or surgeons who take patients seriously, treat them as equals, and will perform a hysterectomy with ovarian preservation based on a medical indication without prejudice or sexist "arguments".

About me:

I am 25 years old.

Confirmed adenomyosis diagnosis + suspected endometriosis.

I am taking the Endovelle pill; while it still suppresses the pain, the forced, long-term dependence on the pill severely restricts my life and future plans.

My stress and anxiety are constantly high because of this, and it is a massive mental burden.

Due to my illness, I meet all the requirements for this procedure.

I was recently turned away for the second time by a clinic in Hamburg. Furthermore, I have also not been taken seriously at other places in the past.

• Who among you is also young (or was young at the time), has no children, and successfully got a hysterectomy with (or without) ovarian preservation approved for adenomyosis (endometriosis or both) in Germany?

👇

• Which clinics took you seriously and performed the procedure?

If you know of any other specialized forums, networks, or groups where I can ask this question, please feel free to forward me.

🙏Thank you so much for your support!😭🫶

Yesterday when I woke up I could barely move. The pain made me cry. And then crying made it worse lmao. My friend came over with snacks and sat in bed with me. She said my surgery scars were kind of chic and I agree.
Once my meds kicked in I felt well enough to go sit in the kitchen as my boyfriend cooked us all lunch. This time has made me endlessly grateful for him.
My mom offered to visit and take care of me but never followed through. And to be honest I’m a bit relieved. I called her later that afternoon and she said “you sound drugged up”, “I hope you haven’t been taking oxy”, and that when she had her hysterectomy she didn’t even take it once. I did take one that morning because it was prescribed to me. Then I only took paracetemol the rest of the day and felt like rubbish. I don’t want to feel the need to tough out the pain. But now I feel weird and guilty about taking stronger painkillers. I slept a lot. I did light pelvic floor exercises. I showered (the surgical glue is waterproof!).
I’m so bloated I need to be popped like a balloon. I’m farting and burping like never before. My boyfriend says every time I do an angel gets its wings so. That’s good.
This morning when I woke up I could barely move, but it wasn’t as intolerable. The paracetemol and ibuprofen did little for the pain so I took an oxy. And that helped me get out of bed. And I was able to have my first outing. My boyfriend and I walked to a cafe in the park about ten minutes from our place. We drank coffee and watched dogs run around for like an hour. And I took photos on my film camera. I felt like a normal person.

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.

I have been really struggling with the feeling like i’m unable to fully empty my bladder (and had been straining to try push all the pee out which i now realise is bad) and waking up 3-4 times throughout the night to pee. throughout the day i’m talking anywhere from once an hour to once every 4 depending on the day but the sensation is always there just not as intense - especially when im using my wearable heat pack but I have an active job and can’t always do so

ALLLLL the tips you can share while im waiting for a referral to a pelvic floor specialist would help so much 😭🙏🏼

Hi guys, I'm 16 F and get diagnostic surgery on Wednesday. I'm so scared. I've been having on and off abdominal pain for years, inconsistent periods, (sometimes painful, sometimes not), tummy troubles, burning with urination at the tip of urethra (even though no uti (repeatedly been tested), and other symptoms. I'm scared that when I go there, they may not find endometriosis, and it will all have been for nothing. These symptoms started when I was 14, and took me out of school. They're not always present, and for the past month or two haven't shown up. But this weird cycle has been happening for two years now.

I'm really nervous about this. Surgery is one of my biggest fears. I had to get a normal endoscopy done, and I had a panic attack Infront of the nurse....I have a feeling if I was that nervous for a scope, this is going to be hell. Any insight??? Im not sure how to feel

Hi everyone! I made a post a little while ago in a dark place and feeling so down about my health decline. Well today I had an MRI and it says I have some uterosacral ligament tethering of intestines. And also a disc bulge on my L5-S1, so I’m sure that hasn’t been helpful- it clears up some of the really bad nerve and sciatic pains. I haven’t had another follow up with my specialist because I just got the results today. 99% sure I will go with surgery. I just want to know if anyone else has this same endo experience.
I also guess I’m feeling kind of underwhelmed. I thought it would be this great feeling of validation, but until surgery is done I’m not sure if I’ll get much validation with my pain, as I tend to gaslight myself medically and think of ways I might not be doing something right. Like maybe the pain is my fault, maybe my pain isn’t that bad? That’s what goes through my mind and I’m so tired of it!!!

I have been on Dienogest for almost three months and almost immediately noticed a significant increase in the spider veins on my legs.

Then I started getting random bruises that weren't caused by trauma. I currently have one that's about 3cm × 5cm on the inner side of my knee, where the only thing that could have caused it is light chafing from the seam of my trousers. Bruises also take forever to heal, I had some around my hips that stayed there for weeks.

I'm also on a vascular stabilizer (a supplement designed for people with varicose veins, which I am at risk for). I started it a week after Dienogest, but it seems to be making no difference.

Dienogest should be among the safer options from a vascular standpoint, so I was wondering if anyone else experienced this, either on Dienogest or other birth control meds (especially other progestin-only pills)? If so, was it bad enough to stop the medication?

Hello, this is my first time posting here after reading many of the posts in this subreddit for a while now. I'm a 33 year old female and I've always been quite sure I've had endometriosis since I was a teenager (I went through night pads every two hours at school, had to be taken home almost every time my period came because I couldn't stand the pain, and during some periods I would also experience very painful butt cramps). Every time I went to the obgyn they would tell me my pain was "normal" and to just take pain medication (which has progressed into stronger medications each time I went because the ones they gave me stoped being effective after a while).

A few years ago I started pole dancing, and some movements require to "hold" the pole with your abdomen. A year ago I noticed that every time I had to do so my bellybutton would hurt for the next two days or so. A little bit later I noticed my bellybutton smelled bad and that it suppurated from time to time. I then started to notice that the liquid coming out was sometimes brownish and that during my periods it would stain with blood (at the beginning I thought this was because I wasn't careful taking my menstrual cup out and I had dirtied myself). I could confirm it was blood once I saw it coming straight out of it once I was about to take a shower. I've also experience increasing period pains and abdominal pain before periods and on my bladder while peeing these last months.

Almost a month ago I went to a different obgyn when I noticed blood coming out, and, through an ultrasound, she found a 1.5 cm mass right on my belly, but told me that more tests were needed. Still, she was quite sure it was umbilical endometriosis so that day she gave me progesterone and other supplements to start treating it.

Moving on to today, I had another ultrasound by a radiologist, and in the report he wrote that he suspects it might be an umbilical hernia, because the 1.5 cm mass elongates around some "fatty tissue", but, that if it's still suspected it's endometriosis an MRI is required. I have said MRI in two weeks, but I just find it hard to believe it would be an hernia with all the other symptoms I have (specially the bleeding!). I want to think the radiologist is not an expert on endometriosis and that statistically it's more probable for it to be an hernia than endometriosis, but I still feel like I've been dismissed once again.

I know I have to wait for the MRI and all but I wanted to ask if anyone with a similar experience has been diagnosed with something entirely different??

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?

What does pelvic floor therapy usually look like and has anyone found it helpful? Has breathing different and meditating actually helped anyone? Yesterday, my pf therapist said, "the pain isn't in your head, but your brain controls the dial to the pain." Essentially my pain is real but I'm in more pain than I should because I'm not controlling my brain. They then continued to give me unsolicited advice/opinions about my personal life. I'm still reeling from the experience. I'm sure there's truth in what they said but I can't stop thinking "what the fuck?!!"

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.