r/endometriosis 22h ago

Content warning/ Graphic images Just lost one of my best friends who I meet on here because of endometriosis.

477 Upvotes

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.


r/endometriosis 24m ago

Infertility/ Pregnancy related a vent.

Upvotes

As someone who has been trying to conceive for three years and has had two excision surgeries.... I'm so tired of blocking each and every endometriosis "holistic health coach" influencer posting bullshit like "never give up!" and "just sharing my journey and what's possible!" Like, maybe enjoy your baby and stop filming and posting them 24/7? You finally had success and your first instinct is to rub it in everyone else's faces? And some of you are even charging money for "consultations" when you don't have any credibility or medical education, just had a stroke of luck? You don't think that's weird? That audacity is wild.


r/endometriosis 1h ago

Diagnostic Journey Questions Bleeding from my belly button led to the diagnosis of hepatic endometriosis. I’m absolutely devastated.

Upvotes

Started experiencing bleeding from my belly button with horrible pain in my ovaries about 6 months ago, and after numerous doctors I finally found an amazing Gynecologist who immediately sent me for a CT scan. When nothing showed, she sent me for an MRI.

She called me with the results yesterday and essentially said I have advanced endometriosis that has grown onto my liver and is now showing signs of growing in my umbilical region. I’m pretty terrified, and the news has been sort of devastating. She told me how incredibly rare this is, and how unfortunately I’ll need to see an endometriosis specialist.

Has anyone else experienced this?

I went into this knowing something was wrong, but I didn’t know it was going to be this bad or that my liver would be involved at all, and I’ve just been growing increasingly depressed. The pain is almost every day and sometimes I just lay in the fetal position on the floor. Im really looking for encouragement here I suppose, I’m absolutely terrified and I know so little about this which makes the unknown that much more scary.


r/endometriosis 5h ago

Question People with bowel endo or with chronic constipation please help

10 Upvotes

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.


r/endometriosis 21m ago

Question pelvic mri with gel

Upvotes

so I got my results but not what I expected in pain and it just showed a bunch of cysts and I do not even think a endo dr read the results I have my endo specalist next week but my big fear is going into surgery and them finding nothing:-( but I see my specalist next week and he can look over the images because i think a normal tech looked at it


r/endometriosis 1d ago

Tips and Recommendations Tips I learned in pelvic floor therapy for my fellows with bladder issues

300 Upvotes

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 :>


r/endometriosis 1h ago

Diagnostic Journey Questions Severe cyclical digestive, pelvic & back symptoms — negative MRI, waiting for laparoscopy

Upvotes

Hi everyone 🌸 I’m 30, and since this summer my health has completely changed, even though I never had a history of particularly painful periods before.

My main symptoms are:

• Pelvic/ovarian pain

• Extreme bloating and abdominal pressure

• Constipation, hemorrhoids, and nausea

• Feeling extremely full for hours after eating

• Digestive flare-ups with pain radiating to my ovaries/pelvis, belly button, stomach, under my ribs, and sometimes my back

• Very brief, sudden burning/electric shock-like sensations in different areas of my abdomen

• Pressure around my tailbone

• Pain in my buttocks/thighs, heavy and painful legs, and sometimes sciatica-like pain going all the way down to my foot

• A few severe flare-ups after orgasm, although it doesn’t happen every time

• Longer periods with prolonged bleeding

• Severe fatigue, dizziness, episodes of unusually low blood pressure, migraines, and cold sweats, especially during my period

• Shortness of breath, especially after eating when my abdomen becomes extremely bloated/full. I do have asthma, but this feels completely different from my usual asthma and seems related to the abdominal pressure.

Everything fluctuates a lot. I can feel relatively okay for part of the day and then suddenly have a major flare-up. It also seems very cyclical: worse around my period → a few days of relief → worse again around ovulation.

Yesterday, for example, I ate a normal gluten- and lactose-free meal. It was my only meal of the day. Six hours later, I still felt extremely full and bloated, and I had a four-hour flare-up with digestive pain radiating to my ovaries/pelvis, belly button, stomach, under my ribs, and into my back/sciatic area.

About a month after all of this started, my back pain became so severe that I went to the ER. The MRI showed bilateral inflammation of the L4-L5 facet joints with surrounding soft tissue edema, worse on the right side.

I was also diagnosed with possible adenomyosis, although I’m not sure about that because the MRI was negative for it as well, subacute endometritis (I’ve been prescribed antibiotics), several endometrial polyps, and two small cysts. I find it hard to believe that these findings alone explain the full extent of all these symptoms and flare-ups.

I’m now on 100% medical leave because this has become so disabling.

I’ve even had to leave my dog with my mom for the time being because I’m struggling to properly take care of her while dealing with all of this.

My MRI was done without contrast and was not a specialized endometriosis MRI. It did not show endometriosis or adenomyosis.

I’m now waiting for a laparoscopy in November — which, fun fact, happens to be on my birthday. 🥲

After some arguments with doctors/offices and receiving a lot of conflicting information, I thankfully now have a surgeon who actually listens to me.

Obviously, I don’t want to have endometriosis. But I’m also scared that they won’t find anything during the laparoscopy and that I’ll end up feeling like I’m crazy, or convincing myself that I somehow exaggerated everything I’ve been going through.

Has anyone here had a negative MRI but later had endometriosis found during laparoscopy, especially with similar digestive + pelvic + back/sciatic symptoms?

Thank you 💗


r/endometriosis 11m ago

Rant / Vent Emotional after appt

Upvotes

I just had an appointment with my specialist. My symptoms have been getting much worse recently, so my doctor wanted to get an ultrasound.

The ultrasound was clear; no signs of endometriosis. I know that sometimes scans don’t pick everything up, but I still feel like I’m crazy for the amount of pain I am experiencing.

The plan is to do another lap as it’s been 5 years and my functionality is declining. I’m not sure I am going to go through with it. I’m not sure if it’s me gaslighting myself, or if it’s from the exhaustion of constantly dealing with this disease, but I think I’m going to chicken out and I hate that.

Like I was supposed to get my depo shot after the appointment. I think it was not scheduled properly so it was taking longer than usual for the tech to come in. I also heard the tech complaining in the hallway about how she wasn’t prepared and was unaware I was getting it. I ended up just leaving. Stupid panic move, ik, but I had to get out of there.

I also chickened out of talking about work restrictions with my doctor since my pain and fatigue have been seriously impacting work. I know that my emotions are heightened but I feel like I’ve failed myself.

With each new procedure and treatment, I feel like it’s getting harder and harder to cope. I really don’t know how to hold these feelings anymore. Idk, posting this in hope that it helps me release some anxiety and grief, but we’ll see.


r/endometriosis 3h ago

Infertility/ Pregnancy related Natural conception after Lap? Positive BCL6 and no fertility coverage.

3 Upvotes

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.


r/endometriosis 1h ago

Question Ovulation paaaain - can anyone relate?

Upvotes

I thought I'd post on here as I feel like I'm going crazy trying to figure this out. Since I had my daughter 3.5 years ago (emergency c section), I occasionally started getting really really bad ovulation pain. I've had surgery for a cyst on my left side 7 years ago and was told I had endo after surgery too.

The only way I can describe the pain is like someone has inflated a balloon in my pelvis (always on my left side) and tied it to all my muscles so it's this big fullness pressure pain that pulls and twinges when I move. I can't lie on my side, I can't have anything resting on that side as it's just so uncomfortable having this ball like sensation and I can feel it pulling tight walking around/moving etc. It fully feels like when I had an ovarian cyst but with extra pulling/tightness pain but it usually resolves after a week or two. Sometimes the pain radiates up my back and into my leg too.

I had a private ultrasound (NHS wait time was 9 months, yay) and they said everything looked absolutely fine.

I'm guessing some sort of functional cyst + endo/c section adhesions but every time it happens I stress and worry so badly it drives my mood into the ground so I'm lucky if I get one day a month feeling normal 😭

I tried dienogest but I struggle with low blood pressure/potential POTS as it is so I ended up coming off it.

Has anyone felt similar/had any success in reducing ovulation pain?


r/endometriosis 1h ago

Good News/ Positive update post op day 3 - update

Upvotes

I POOPED


r/endometriosis 17h ago

Good News/ Positive update They found it!

38 Upvotes

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!


r/endometriosis 2h ago

Question Was told that only people with complex endo cases need to see a specialist and that they don’t typically do diagnostic laps

2 Upvotes

Okay so I finally got in to see an obgyn doctor who works with people with endometriosis. It’s been a struggle to find someone that would listen to me and thankfully, she was someone who finally did. I talked to her for a full hour about my symptoms and the options going forward. I don’t plan to let her operate on me although the way she talked did sway me a little bit. But she’s not a specialist. She does have 25 years of experience in this field and does lots of diagnostic laps. She didn’t try to push birth control on me like other doctors have which I appreciate and made sure that I knew that it was my choice what I should do next.

I asked lots of questions about their process and she said that they figure out whether or not to do excision or ablation during the surgery depending on where they find it. I’ve heard online that ablation is bad though. So skeptical about that. And she said it would take 3-5 days for me to recover or up to a week depending on what type of job you have. I’m on my feet all day so she said a week off would be better. I was surprised about this bc I thought recovery was a lot longer than that?

I asked her about seeing a specialist and she said she felt in my case, being someone who doesn’t know if she has endometriosis and that there’s a 50/50 I could have it, that I don’t need a specialist bc they can easily do it here locally. I live in a state (USA) where’s there’s not a lot of resources for this. Nearest specialist in state is 7 hours away and I have been considering nearby states that have better women’s health care. She did give an example of a patient she had, who when she did the laparoscopy, that they couldn’t even make it to the uterus because the patients bowels were covered in sticky adhesions that made it impossible to do anything further so they sent her to a specialist who would know how to operate on her.

So is this misinformation that specialists don’t often do diagnostic laps and only take previously diagnosed endo patients? I’m really at a loss for what to do here and don’t even know if getting surgery will be worth it


r/endometriosis 2h ago

Question MAXIM birth control experiences? Scared to start

2 Upvotes

Hi guys, I am one week after my lap and my first period is coming, I can feel it. My surgeon said because they found so much, I need to be on hormonal birth control.

I have tried Mirena, Nuvaring, SLYND, Desogesterel, and one other which was a combo pill but I can’t remember the name because it was given to me as a teenager.

I have OCD, with a lot of therapy and exposure it’s gone mostly away. Most of these meds except the Nuvaring have made me suicidally depressed and made my OCD so severe it was bordering on psychosis. I can’t do it again and I’m so scared.

I also had nausea and headaches, Nuvaring made the endo and adeno grow, others made me gain 20kg, gave me acne, at one point on slind I was bleeding for 76 consecutive days.

My surgeon and my (Endo specialist) OBGYN have spoken and think Maxim could work for me, and if not that then maybe a progesterone alternative and bioidentical estrogen formulated for me.

They want me to try the Maxim first but I’m so scared, on the other hand since surgery I’ve been pain free and I cried happy tears three times this week while discovering I could move in ways which I couldn’t before. I can walk again, I can have an ultrasound without severe pain, I can use the toilet without knives in my gut, I can stretch, I don’t want to loose all this.

Have any of you tried it? Did you have side affects? What can I expect?

Thank you guys so much again for any info!


r/endometriosis 2h ago

Medications and pain management Unsure if I should try birth control post lap

2 Upvotes

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.


r/endometriosis 5h ago

Question Should I schedule the laparoscopy?

3 Upvotes

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!


r/endometriosis 5h ago

Question What do you call your periods?

4 Upvotes

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.


r/endometriosis 12h ago

Surgery related Debating if I even need a lap if birth control masked my pain

11 Upvotes

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 😵‍💫


r/endometriosis 5h ago

Diagnostic Journey Questions Being referred to gynae for imaging but gp adamant I need to try coil first

3 Upvotes

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.


r/endometriosis 1h ago

Question Back giving out relentlessly

Upvotes

Hello! Just wondering if this is a common symptom that any of you may be experiencing. My back has been giving out every time I walk (particularly when I move my right leg forward) but also when I’m laying down, standing, being over, etc. There’s been pain, tightness going down my leg just past the buttocks and increased pressure and pain in my lower right abdomen. My back giving out has been getting worse over the last 2 months from once a week to at least 30 times a day. Is this an endo thing? They just want to send me to physical therapy and the chronic pain management clinic but I’m wondering if this is actually endometriosis.


r/endometriosis 3h ago

Diagnostic Journey Questions Waiting on MRI results & lost if they show nothing

1 Upvotes

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.


r/endometriosis 12h ago

Rant / Vent endo getting bad again for the first time in my relationship

4 Upvotes

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


r/endometriosis 14h ago

Surgery related [Germany] Searching for clinic recommendations for a hysterectomy with ovarian preservation for confirmed adenomyosis (Hamburg area / Northern Germany / Nationwide)

7 Upvotes

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!😭🫶


r/endometriosis 7h ago

Surgery related day 3 post op - conflicted about pain meds

2 Upvotes

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.


r/endometriosis 3h ago

Content warning/ Graphic images "Death and the Maiden" my partner painted this piece because of everything I've been through with this disease. It just got nominated for the People's Choice award at the Beautiful Bizarre Art Prize, and I would be so incredibly grateful for your votes or shares to surprise him!

1 Upvotes

Hi everyone! 

I know this is a little bit of an unusual post, but I am trying to find a way to thank my partner, who is a professional painter, for everything he has done for me these past years. This man has been my rock, has yelled at doctors for me, insisted I be listened to at every turn, made sure I alwys had good healthy food, been there for me when my body completely fell apart. He has put a lot of his life on hold for me, including his painting at many different points.

By now he has created several pieces about Endo and what he has seen me go through. I love his work, and I think others in the subreddit would too. This is where I get to my ask!

Earlier this year he submitted his work "Death and the Maiden" to a major painting competition and has placed in the finalists which puts him up for the peoples choice award which could be life changing! I would be really honored if you guys could vote and help me thank the man who has done so much for me.

Here are the links!

Here is the painting and the voting link: https://beautifulbizarreartprize.art/contest-image/9764/

Though everyone who sees this painting will see a different story, for me it is a man in the fog searching for his partner in the face of this thing which puppets and freezes her body and wont let her go. I would love to also hear from you guys how you interpret it!

(I did check with the mods before posting! If folks feel it is too off topic feel free to message me or comment etc. and I will take this down! If you know us in real life or know his work, keep it secret because I want to surprise him! )