I've suspected I have Endometriosis since 2020, but the doctor wanted me on BC first (didn't go that route) and it wasn't that bad.

I have Ehlers Danlos syndrome, so I'm used to chronic pain, I have no baseline for pain. But lately there's been a spot, left to my navel, that hurts so bad that I can't sleep. I also have other symptoms.

Thing is, I am homebound (really sick) and I don't have friends. Abusive family.

I don't want to go through Lap (what if it's not Endometriosis?) but the pain is getting to me. I just don't want to be alone. I'm not from an English speaking country and I don't know what to do. I can't walk a lot and I am very fatigued. I can get a cab back home.

I don't really want to ask from internet strangers to be there for me. This situation causes me to put it off.

I could use some advice and insights from those who have been there. Thanks.

When I get my period I always get aches, pain, tingling and cramping in my legs, as well as this they often feel really heavy and tired and sometimes tight. All of this always goes away when my period ends, except I just finished my period (I think, who knows 🤷‍♀️) and I'm still experiencing all the pain, fatigue etc in my legs. And it's worse then ever before. Does anyone have any tips/tricks/advice for relieving or getting rid of leg pain associated with endo? For me heat and pain killers don't work, I usually just suffer until my period ends but the pain has never been this bad, or lasted this long and it's also pretty uncommon for me to feel all this at once so I have no idea what to do.

When I get my period I always get aches, pain, tingling and cramping in my legs, as well as this they often feel really heavy and tired and sometimes tight. All of this always goes away when my period ends, except I just finished my period (I think, who knows 🤷‍♀️) and I'm still experiencing all the pain, fatigue etc in my legs. And it's worse then ever before. Does anyone have any tips/tricks/advice for relieving or getting rid of leg pain associated with endo? For me heat and pain killers don't work, I usually just suffer until my period ends but the pain has never been this bad, or lasted this long and it's also pretty uncommon for me to feel all this at once so I have no idea what to do.

I have just added a new post flair called “Diagnostic Journey Questions”.

This is because of feedback from many sub users that they would like a specific flair for people who are asking questions about getting diagnosed.

I thought carefully about how to phrase the flair as something like “seeking diagnosis” could imply that the sub can provide diagnosis, which we can’t, because the sub is for support and sharing information, not for medical advice.

If you see posts that you think should have this flair but don’t then please feel free to report them under the missing flair category. Please don’t report all the historic posts as I don’t have time to go through the last decade of the sub changing flairs!

As always, if anyone has any comments or suggestions on flairs I would be happy to hear them.

Just hoping for some advice or tips and tricks that might make my life easier with recovery. I've been advised it'll be an overnight stay - potentially two or three if endometriosis tissue is found and anything is removed (obviously depending on a lot of factors here).

Thank you

I just wondered if anyone might have the same or similar experience to me. After I have an orgasm I have prolonged abdominal pain that won't go away without heat pads or pain meds. The better the orgasm, the worse the pain. It's really a turn off. It started after I experienced my (most frequent) pain spiral over two years ago. I already deal with vaginismus, frequent and prolonged bleeding, and mental trauma surrouning sex thanks to purity culture getting in the way pleasure. I just want to feel normal and enjoy sex and it feels like my body just keeps adding barriers. Taking pain meds just to orgasm takes away the spontaneity and most meds don't work due to medication interactions. Heftier pain meds aren't really an option either because my job doesn't allow for substances that could potentially alter my mental state. If anyone has a magical solution, I'd love to hear it because I don't think I can really handle sympathy right now.

I have posted before but just wanted some advice

Bilateral 6cm endometriomas, uterus and ovaries attached to bowel.

I have had these cysts grow quickly in the last 5 months. I have painful, heavy periods. The cysts can hurt too.

But, I don’t have daily pain. I do feel better with a healthy lifestyle.

I also have autoimmune arthritis (not taking medication cause it comes and goes)

I’m worried the arthritis will get way worse after surgery, please no horrific stories, I do that well enough in my head. I am though, worried to loose my ovaries too soon if they can’t save them.

What would you folks do?

So I literally went to my gyno on Friday.

I've been on 5mg of norethindrone acetate for a full year now, I began and my period stopped in the 2nd month of being on it.

The last 6months I've been under extreme stress and depression because of the stress.

Went to my Dr. Friday and told her the month of January I had weird acne break outs on my back, neck, and chin (usually when I did get break out it was in my t zone), and I was having increasing bouts of anger over December and January as well as small endo symptom flare ups.

Explained her the stress and depression I had been having, and told her I was concerned about it effecting my hormones.

Long explanation short from her, she basically told me to go get my wellbutrin increased...she couldn't do anything for me.

And boom, today I have slight bleeding after no period for 11+ months...

Anyone have a similar experience? Do i need to find another Dr?

hey guys i’m so confused but maybe someone here may be able to shed some light??

so in 2023 i have a pelvic ultrasound, and everyone agreed that my uterus was immobile due to adhesions.

fast forward to jan 2025 i was in emergency for a burst hemorrhagic ovarian cyst, i had another ultrasound and my sonographer was also confused, supposedly my uterus is mobile???

why would this be, was my previous sonographer inexperienced? i am genuinely so confused.

For the past 9 or so, I started to have weird symptoms. POTS, joint pain, swollen painful lymph nodes, vertigo, severe GI issues and pain, bad allergies. I still have all of these things but only developed endo symptoms this year, like it was so random. Has anyone else had any of these symptoms? I was also taking proton pump inhibitors for my GI issues for the past three years which started to make me feel worse, then my endo symptoms started. I feel as though there has been so much inflammation in my body for the past 9 years that endo started to “activate” or something. Not that I caused it because I did NOT, but I feel like my other issues going untreated and ignored for so long could have led to this? I feel like it even could have even been prevented potentially. This is all speculative of course, and I know some women have no other health issue except endo, I’m just wondering if someone else has had a similar situation. I really wonder if there HAS to be a predisposition for the disease or if a shit ton of inflammation/hormonal imbalance/immune dysfunction can cause it in anyone.

I feel pretty good from the time my period starts up until I ovulate. Then it’s hell. Every month I’m convinced I have the actual flu. Aches, chills, diarrhea, colon spasms. Ovary pain so bad I can’t stand straight. No energy left in my body. Nausea for a week where I lose my appetite for everything. Some months it’s one of these symptoms. Other months it’s all of these. Anyone else? Did anyone have these symptoms and get a lap? Where did they find the Endo?

If you ended up not getting diagnosed with endometriosis, what were you diagnosed with?

Hi guys.. please help me.. I am in so so so much depression.. I am asymptomatic kind of.. Fortunately I don’t have debilitating pain like others.. I just got diagnosed with multiple endometrioma cyst on both of my ovaries with a regular ultrasound.. big on 5.8 cm then my gynaecologist put me on dienogest 2 mg.. two months I’m taking it in the hope of shirnking them .. I also taking NAC.. is there anyone who monitoring large endometrioma from a long time?? Please tell me.. but still I am so so depressed after seeing a lot of horrible posts from nancy group and other endometriosis group.. In Nancy group she claiming medicine don’t stop endometriosis and what if I end up losing kidney or bowel or die from endometriosis in future without surgery.. I m from asia and in my country people don’t do any exicision surgery ( just cystectomy) and they’re doing fine with horomonal medicine.. but when I joined western endometriosis group i got too much anxiety and depression like people doing 4-5 surgeries for endometriosis excision and even people end up bowel resection and kidney loss.. what should i do guys? Am i going to die if I don’t do excision surgery.. 😭😭😭😭😭

Hello! Getting ready for my pre-op appointment this week. I am looking for questions to ask to make sure I am covering my basis! TIA

I had my lap on 1/10/25 and they found peritoneal endo on my bladder, ureters, rectum, uterosacral ligaments, rectovaginal septum, and pelvic sidewalls. My surgeon was great and she basically resected the lining of my whole pelvic cavity along with the tissue around my ligaments/ureters. Recovery has been ok so far (never had to use the opioids and was able to manage on just Tylenol/advil for twoish weeks). This past week or so I have really noticed my pain start to ramp up which makes sense since I am about to start my period. I had an IUD placed while I was under too and that has been giving me some major cramping and spotting. Today I’ve noticed that both of my legs (particularly my calves) are so incredibly sore like I’ve climbed 30 flights of stairs. My lower back, hips, thighs, and butt are also so sore and I’ve been having migraines every evening for the past week. My joints are also crunchy af lol.

I’m curious if anyone else experienced this or had what felt similar to an endo flare during their first few periods after the lap? I know my body is healing and I’m trying to be patient but the pain is honestly starting to be worse than before the lap :( tysm for reading :))

i'm 21f, i had endo excision between my uterus and rectum as well as an appendectomy last may. my periods were alright for two months, then they got bad again so i decided to try depo (i know, i know) and since the depo i've had a huge uptick in my typical period related ibs attacks. usually i could go a month or two without one but now with my periods being weeks long at a time, i'm having full on ibs attacks at least once a week. my cramps on the depo aren't any less severe as they were off bc but my flow is significantly lighter. also i've been having horrific ovarian pain on the depo. i'm getting tested for adenomyosis tomorrow which will be hit or miss with an ultrasound but it's the first step. i just feel defeated and like i'll never find a good balance for my body. i can't tolerate oral bc, i doubt nexaplanon would be any different than the depo and i'm too scared of an iud because i'm scared it would get embedded im my uterine wall. i haven't tried the ring or the patch but i'm also doubtful of those. i feel like there's gotta be other ways to manage endo besides birth control. i'm so done with it!

A new symptom started some days ago. Stinging, stabbing pain of low left side of abdomen ( not urethra) only when urination and lingers for some minutes after urination. Not a uti GP said nothing to worry about.

So it’s been going on for a few months now but before & after my surgery it feels like my uterus has been twitching? That’s the best way to explain it… like a switching in my lower stomach well below my belly button, almost if you got a twitch in a muscle in your leg but specifically it feels like inside my stomach like an organ? Idk. Pretty sure it’s my uterus. It’s where you’d typically gets cramps. Doesn’t hurt or anything but does anyone else experience this?

I’m in urgent need of help!

Last December, during my period, I experienced severe abdominal and back pain. Normally, I have cramps due to PCOS, but this pain was different—sharp, lasting 3-5 minutes, and recurring every 15-30 minutes. I took painkillers, but they didn’t help, so I went to my university clinic for stronger meds. After that failed, I ended up in the ER, feeling like I was dying, with pain rated 10/10.

They ran tests, initially suspecting appendicitis (thankfully it wasn’t). Eventually, they diagnosed me with an abdominal infection and multiple inflamed lymph nodes. Being an international student in Hong Kong with no family or friends nearby, it was terrifying. My parents urged me to return to India for treatment.

In India, doctors diagnosed me with Cholelithiasis and mild pelvic inflammatory disease (PID). They prescribed medication and advised me to avoid certain foods. I managed a few flare-ups but got back to Hong Kong for finals.

Now, the pain is back at 10/10, similar to my first episode. I've taken painkillers, but if they don’t work, I may need to go to the ER again, which scares me.

What do you think this could be? I fear it might be Endometriosis or PID again. Please help! 😭

I have lived with endo for most of my life and thought I'd seen it all. I diagnosed 14 yrs ago, and endo has taken several organs. Now add fibroids to the mix (endo aspect is stable year 4 post-op) my pelvic floor is mad as hell...and the pain has settled into my nervous system.

I am almost 40 but frail like someone much older. Poor circulation, body pain, anxiety, feeling dizzy, tremors... chronic pain cannot be good for my brain either. I am so so so tired. I have a therapist, pelvic floor therapist, dietitian... literally doing it all and my nervous system and cortisol are still cooked. Losing hope.

Hi ladies! I’m new to this community but so grateful to have come across it. I was diagnosed with endo this past summer at the age of 27. I have two, 3 cm endometriomas on my left ovary that often cause a dull ache / pain and bloating on my front left. The good news is I just had a check up in mid-Dec and there was no growth in either cyst since being on birth control the past 6 months.

However, fast forward just two weeks to the 1st week of January and I started having extreme lower left back pain. It started subsiding somewhat the last 5 days until I sneezed this morning. My back instantly tightened and I’m right back to extreme pain and discomfort. It’s been 4 weeks now and really impacting my mental and physical health.

Has anyone else experienced this type of back pain before? Although it seems a stretch I’m worried even in the month since my last appointment one of the cysts has grown. Or perhaps I have endometrial tissue that has spread to my back which would be terrible. Or I’m trying to hard to connect the dots and it’s just a muscle strain

I welcome anyone’s thoughts, experiences, or even tips/tricks for pain management. I’m thinking of trying acupuncture in the meantime

I have zero friends. I used to have 1-2 locally that i considered friends, but unfortunately when I went through a terrible bought of depression they decided I was too much.

I am lucky that I have a supportive husband, but that's it. That's my support group. I can't even rely on my own mom. I feel so lonely and hurt that people decided to just walk away from me. I know in the end, it's good because they obviously weren't true friends... but I'm 40 and I feel like I don't have anyone.

My right ovarian cyst was 1.2 cm last month, six weeks later its 2.5 cm. On the first scan they said its "mildly complex," now they arent sure what kind of cyst it is other than it looks a little different than it did last month. They arent sure if its an endometrioma. I am diagnosed with interstitial cystitis, have suspected endo and having a laparoscopy soon. What rate did your endometrioma grow in size? Is doubling in size in 6 weeks (two menstrual cycles) not typical for an endometrioma? I have also had large blood clots with my periods for my entire life, this is the first cycle that they arent coming out. Its really strange and Im wondering if the blood is pooling into the cyst.

What if I’m just exaggerating? What if the bleeding isn’t heavy enough and the pain is normal for a period? What if I go to get the procedure and the drs are like “this dumb bitch doesn’t even have it”?

Moin, ich benötige dringend euren Rat.

Meine Frauenärztin hat nicht die richtigen Werte abgenommen – oder besser gesagt, zu wenig. Ich habe eine Überweisung bekommen, auf der Hormontests, Ultraschall usw. vermerkt sind. Sie wollte jedoch keinen Ultraschall machen, mit der Begründung, dass wir vor 6 Monaten schon einen gemacht haben. Zum Verständnis: Ich habe Adenomyose und zusätzlich Endometriose sowie starke Symptome, die unter anderem auf ein hormonelles Ungleichgewicht hinweisen.

Die Ärztin meinte dann, dass ich bei Problemen einfach wieder die Pille nehmen könne. Ich sagte jedoch nein, weil ich diese beiden Erkrankungen habe und sie nicht mit der Pille unterdrücken oder sonst wie behandeln möchte. Ich hatte damals Nebenwirkungen durch die Pille und möchte nun der Ursache auf den Grund gehen. Ich wünsche mir ein vollständiges Blutbild, um meinen gesamten Hormonhaushalt zu überprüfen (wie auch auf der Überweisung vermerkt), damit ich herausfinden kann, warum ich ständig unter Kreislaufproblemen, Haarausfall, Nachtschweiß usw. leide.

Am Ende hat sie nur 7 Werte abgenommen, obwohl ich ein großes Bild verlangt hatte, und diese Werte sind auffällig. Allerdings habe ich bisher keinen Anruf von ihr erhalten.

Ernährung und alles ist bereits umgestellt und es hilft auch etwas, aber ich müsste wissen, welche weiteren Werte man abnehmen könnte – zum Beispiel die Nebennieren, die Schilddrüse usw.

Ich bin 20 Jahre alt und möchte einfach nur, dass die Adenomyose und Endometriose nicht schlimmer werden. :/

Slynd stopped working?!

I have been taking slynd for the past 10 months. Slynd has significantly lowered my pain. I am still getting my periods and ovulating, but pain is nowhere near where it was. My daily pain was gone.

Until the past week. I had my period and as usual got the post period pain. But it doesn’t stop. Now its been whole week and it’s only getting worse. I am panicking. It’s not even cramps. It feels like I have an open wound inside my lower abdomen or shards of glass that are just moving there (endo in pouch of douglas).My abdomen feels tender and sore.

I am now taking the green pills, since I skipped them for 5 months, with hopes of resetting my pain.

Can anyone give some reassurance? Or any advice? Why is this happening???

I can’t get another surgery since I recently had cancer treatment, even IUD is risky because I am severely immunocompromised. I don’t even know what to do. Just crying while I am writing this

Conceive or does it just hurts or a quality and is it worth it positive stories please or does it just hurt your eggs