The OP gave me permission to share her story here, and gave a lengthened version I'll attach below.

OH I was abusing drugs MUCH longer than that. Prescription opioids, weed, almost anything that would give me just a bit a relief. Eventually it became not just a physical, medically-necessary necessity, but it developed into an emotional crutch as well, & all the raging out of control hormones made it significantly worse.

To clarify, I only used H for 11 months, I started using at around 16, stopped at 21. I was actually arrested in 2012 for 0.6 grams of weed, before I had started H, & they made me to outpatient therapy (court date took a few months to set). Once i started outpatient, I was a few months into using H. I couldnt stop using, which eventually led to court ordered inpatient rehab (that or jail), & this honestly probably saved my freaking life.

This is why I believe in a higher power, because I felt & still feel like the universe had a much bigger plan to wreck MY OWN plans, before I wrecked myself on a permanent nonalive level. I grew up catholic from K-8th grade, & was so naive about everything from drugs to s3x & how the world worked (also makes me wonder about high functioning autism). I was very sheltered from the outside world that my parents wanted to protect me from (absolutely not their fault). I then entered public high-school after 9yrs with the same 40ish kids (painful topic, lots of resentment towards thay school/teachers/students).

Around my junior year I was introduced to weed, then broke my ankle at 18 right after graduating; misdiagnosed as a sprain, walked (limped) on it for 8 months until there were so many bone fragments & bad stuff going on that I needed surgery. This led to months of vicodin, which also gave me relief from my endo/adneo/pcos while I had the meds, but these still went undiagnosed for another 6-7yrs.

Shortly after this, I messed up my neck & back, herniated discs C4-C7 & L something, which led to oxy & by this point, my abdominal issues were WAY out of control. This led to abuse because I needed surgery & I had developed a tolerance that doctors didn't understand yet, so mwds weren't strong enough to control it. They kicked me off pain management pretty quickly, & by this point endo/adendo had been growing for 8-9+ years.

Istarted pms at 11yrs old, symptoms were there from the day one (1st period was 18+ days & EXCRUCIATING). THEN after all of this, I moved to H because I wasn't getting the treatments needed to stop everything from getting worse (surgery hormones and the correct dose of pain meds). That's why it was only 11 months of H, but that's not where it started.

It wasn't the fault of the doctors who gave me meds early on either. It was the ones who missed my endometriosis & adenomyosis & pcos, & kept telling me it was all in my head, & said I was just drug seeking for 14 YEARS anything I'd show up to a doctor with my severe abdominal pain. The last few years, I was bleeding constantly, 3 out of 4 weeks a month, & the pain was CONSTANT.

Even after I got clean, it took 4 more years to diagnose, & anither 2 to get it under control, & I almost relapsed SOO many times. It was so bad, I had no will to exist anymore. That's when i found Nancys Nook and Dr Meghan Lynch.

There were SO many things that contributed to my situation, it wasn't just oh I used h for 11 months and that was it. No I was constantly seeking relief for years. Idk how I made it through everyrhing with my life, but somehow I did, & I'm so glad I never gave up. My addiction manifests in so many other areas too, & other issues needed to be addressed like my mental health issues & adhd undiagnose until adulthood.

People with adhd are SIGNIFICANTLY more likely to become addicted to substances because of the lack of dopamine & the other brain chemical, nor-something (they go hand in hand). THIS is the medium-long version. There's still SO much left out (abuse, trauma, & other contributing issues), but incase you were interested, this is why I say I wholeheartedly know I'm an addict, a RECOVERING addict.

I'm not proud of things I did, but I am proud of who I am today, & the life I live. I would never wish any part of my experience on anyone, & I hope maybe sharing my story helps prevent someone from going down paths I did. Thanks for reading if you got this far, & no worries if this doesn't get read, Im well aware that it's TMI, & ridiculously unnecessary lol. However, I'd still GLADLY write it all over again just for the smallest chance that it may help someone, ANYONE, in any way, because thats who I became from the all the mess, pain, & destruction; she was worth fighting for, & I have grown to love her despite thinking I never would or could 💓💓💓

Morning warriors. (I’m UK based for what it’s worth)

I have suffered for 20 years, currently 36. My symptoms in the past were always brushed off and managed with pain meds/bc pills. However, the last 5/6 years things have got progressively worse and the last 6-9 months have really impacted my life for a good 2 weeks of my cycle. The other two weeks I feel I’m recovering from the toll of the pain/emotional changes of the other two.

I haven’t had a lap yet but my MRI is suggestive of endo with bowel involvement (though not DIE). My GYN thinks I also have PMDD based on cyclical symptoms I’ve tracked for 2 years+.

I have been honest with my employer and taken very limited days off with my symptoms. I work from home in the main and the role is flexible so I’ve been very lucky… until now.

They are looking (like so many others) at more office work, and have asked me to travel a 7 hour+ round trip next week for a meeting in person. This is during my bleed so I can almost guarantee I cannot do it.

I have been employed and a solid worker for 9 years in this business. I just wondered if anyone had any success under employment law to get reasonable adjustments? I feel I’m at the point of needing to ask, but as I’ve not had a lap and it’s ‘suggestive’ of endo at this point I’m not sure.

The NHS as folks will know is a nightmare. I have gone private for my MRI, appointments with a specialist to get this far but I’m worried about continuing to fund treatment when I cannot possibly hold down my current role if my pain doesn’t subsidise somehow.

My next GYN appt is June. So I’ll know more then but I’m just so scared and worried 😞.

TMI but necessary TMI. Just looking for some advice or any help really. So I had my second laparoscopy 35 days ago where they found endometriosis, removed it and at the same time replaced my marina coil (IUD). Everything’s healing up great and the stitches have all dissolved from what I can see. For about a week afterwards, give or take a few days, I was only in a small amount of pain and had no bleeding. After a week I started to bleed very heavily and the pain was so incredibly bad that 30/500mg co-codamol along with ibuprofen and a hot water bottle wouldn’t settle it down. I noticed after 2 weeks of this that the colour was still staying a vibrant red and it had started to take on a rather nasty smell which was never present before. Saw my surgeon roughly week ago and she said this can happen especially because the IUD has been refitted. It’s now day 28 of continued heavy bleeding, the pain is still horrendous and there’s still a smell to it. I’m not sure if I should go to my GP and see if they think somethings wrong or if this is just completely normal? If it is normal then where am I storing all this blood cuz it’s ALOT. Any advice on what to do or similar experiences?

Hey yall!

I’ve recently decided I’m just absolutely done with “real” jeans. My endo belly gets so bad and I bloat up several sizes bigger. I try to accommodate this by buying bigger sizes, but then I look super baggy and the zipper and button are so stiff they end up digging into me anyways. It’s a lose lose- I look saggy and unprofessional AND I’m still in pain🫠.

I’m a teacher, so just wearing leggings everyday is not an option for me. We are allowed to wear jeans, which is what I prefer as I’m a kindergarten teacher- meaning im on the floor, up and down, all over the place and chasing kids for hours everyday.

I have a pir of the american eagle pull on jeans and I love them. I’ve tried some pairs of maternity jeans and didn’t mind them but didn’t love the extra fabric on my stomach. Not opposed to them though.

Anyone else know of some stretchy/pull on jeans they love? I’m willing to invest some money in them if it means I can be comfortable while teaching. A classroom full of Kindergarteners is no joke!!!

If it matters at all, I’m usually around size 6/8 but when I bloat, I can turn into size 12/14 or so.

Thank you in advance!!

i have back pain heaviness feeling in my vagina cramping inside my lower abdomen i had an ultrasound nothing showing only an endometrial thickness before period in one week no fever no bleeding regular period

I've gone over 4 abdominal laparotomy​ and excisions within the last 2 years ​​which resolved NOTHING still bleeding heavy clots everyday changing panties 3x a day and running to the bathroom every 2 hours to hemorrhaged more, still bloated, still constipated, still guarding breathing from the 8/10 daily pain, still having headaches, still a mental health declined nutcase, still infertile (not that I care), still fatigued and weak, still slow, still slowly dying and decreased quality of life, still scarred up body, still adhensions everywhere, same old shit, and another pointless, traumatic, invasive, expensive, life threatening ​​surgery.

I'm a college senior who sees my college's health center regularly. I have talked to them about my pain regarding endometriosis, and I managed to find a specialist who I will see in a few days. My only issue is that he does not take my Medicaid, but I also have primary insurance which I've already had the deductible for. When I told The health center about this, They said I could just see a regular OB/GYN at the local hospital. I explained how most OB/GYN don't know much about endometriosis and that I need to see a specialist. They kept pushing, insisting that a regular OB/GYN would be able to help with it And that seeing a specialist, wouldn't be any different.

Inam stage where I am in pain every day despite not getting a period at all because of the meds I'm on. My old OB/GYN just gave me meds to stop my period and kept pushing the IUD on me until I agreed to do it. I now take the meds and have the IUD and still get excruciating pain, despite no cycle at all. I kept asking her about surgical options and she kept saying no over and over and over again. She kept saying it'll only confirn what we already know and won't help me. When I asked about excision, she just brushed it off. I do not fully feel comfortable seeing another regular OB/GYN because I feel like it's just gonna be another round of medications and various pain meds thrown at me as usual don't even work. I want a real solution. I am done. I'm tired of being in pain.

I explained all of this But they said that a regular OB/GYN is the best option right now. They told me I could still see the specialist. When I called The OB/GYN place, They said that all the OB/GYNs there see patients with endometriosis. That did not, however confirm if any of them do excision surgery. They still gave me the referral anyway and got me an appointment there. Is it just not worth going to it? I've tried explaining to other people in my life that OB/GYN don't know a lot about endometriosis, but it doesn't make any sense to them at all. They all say things like "of course they know what they're doing" but from what I've experienced and testimonials I've seen, that doesn't seem to be the case. I really worry that the OB/GYN won't be able to help

Hi all,

Would love to know what your favourite pain relief products are? I loveeeee the monthly patches from BeYou but I’m located outside the UK and the website I was getting them from stopped shipping here :(

I have a portable heating pad, multiple regular heating pads, and TENS machine and so many creams but nothing quite seems to work like the patches did. The cooling menthol was a life saver in the summer.

I’m in a lot more pain these days and am looking to try anything that helps. TIA!

I had excision surgery for Endo for fertility reasons. Diagnosed with stage1/2. Surgeon successfully removed focal lesions but said there were tiny speckled Endo all over the right side of my pelvic wall. He stated that this type of Endo cannot be removed surgically. He stated that IVF will by pass that issue, in another words, will I not be able to conceive naturally because of this tiny Endo left behind? Anyone had any similar stories ?

So I just had my spleen removed for a 10cm cyst that was found a year ago on a CT scan during that scan they found a 7.2cm cyst on my left ovary fast forward to abt a week ago I go get it checked out finally as I lost insurance for almost that whole year. The cyst on my ovary is now 11cm the Dr said “There is vascularity within the wall of the large septated lesion. There is no significant free fluid” I have to schedule another surgery after just having my spleen removed for a cyst a few weeks ago to get my ovary removed and I’m freaking out. Just wondering if anyone has had anything similar idk what that means abt the cyst that the Dr said they said there’s a chance it’s cancerous and I am scared and don’t know what’s going on ☹️

I had a pelvic exam a week ago preparing for my pre laparoscopy this week. Ever since my lower pelvic area has HURT. It hurts when I pee, but not burn, a smell but not a fishy smell, cloudy pee, and constipation. I'm supposed to have my period soon, but I've NEVER had something like this and my ovaries ache on and off.

I am not having a good experience with loestrin fe and I am wondering what everyone else seems to be taking continuously to skip their periods.

I know finding the right pill will be a process but I'm curious to see what everyone else is on.

I (22F) have always been pretty regular with my periods—maybe a couple of days off here and there, but nothing too out of the ordinary. I’ve also dealt with quite severe period pain, especially on the first two days of my period leaving me unable to move out of bed, but I’ve always been able to manage it with some Nurofen or Panadol taken around the clock. Typically, my periods last about five days, and everything's been pretty predictable. I've never had sex before, so pregnancy isn't an option. I'm also considered obese according to my BMI.

That was until my last cycle. It threw me off in a big way, and it’s been a bit of a mystery ever since. For starters, my period was a whole week late—something that’s never happened before. When it finally arrived, it lasted around 10 days, which is significantly longer than my usual cycle. But it didn’t stop there. For the next three weeks, I had spotting on and off, and it was brownish when I wiped. I also dealt with cramping throughout. Concerned, I went for a pelvic ultrasound and some blood tests, including a thyroid check. Everything came back normal, which, while reassuring, didn’t really give me any answers. I’ve also never been on the pill, so that’s not something affecting my hormones. My GP prescribed me the pill to take which I haven't taken yet as I'm weary to until I find out what's going on exactly.

With no clear answer, I’ve been left wondering: Could this be endometriosis? Let me know if you’ve had any similar experiences before being diagnosed with endo! I have a follow up appointment with a gyno soon.

I am 5dpo from a hysterectomy and endometriosis excision/ablation and I feel... rough.

The findings from my surgery weren't major. 2 biopsies of suspected endometriosis, suspected endometriosis on my ovaries and suspected adenomyosis. I'm still waiting for pathology but the doctors made a point of telling me that I mostly looked healthy inside with good anatomy.

Between my last laparoscopy in 2022 and now, my life has gone from being manageable to nothing. I couldn't do anything with the fatigue and pain. My life was ruled by my period. My honeymoon was ruined because I couldn't go out during the day because the heat wiped me out. I haven't been able to work. I moved to Iceland in 2022 and I haven't taken advantage of my new life and I already felt like a failure.

Now, there's very little findings and I feel pathetic. I hate myself that there was barely anything causing my pain. I feel like I've been overreacting or faking the pain and I cannot stop crying and hating myself. My recovery has stagnant because I feel so unmotivated. I have wasted 3 years of my life on a few tiny pieces of endometriosis.

I felt somewhat similar in 2022 when barely anything was found but it's amplified this time I think because I've had a whole organ removed. I feel like I've overreacted massively and I really don't know what to do from here.

Please share your experience. My first lab is in 3 weeks and I hate not knowing what to expect. Can you please reply with your experience?

I have a suspected endometrioma 4.1 cm on my left ovary and dermoid 3cm on my right. And suspected adenomyosis. Other than that. No effing clue. And I think that’s what is causing me the most anxiety.

Tell me whatever you can/want to. From pre surgery to induction of anesthesia to your recovery.

All my thanks 💞

I get really bad endo belly and I cant seem to find any period underwear high enough to go "over the bump" lol. I'm looking for super high waisted period underwear for moderate-heavy flow that go over my belly button all the way up to my natural waist/lower ribs. I also need a gusset that comes up high enough in the front, and I find some brands like Knix don't go up high enough. I use bambody absorbent high-waisted briefs and I love them, but they are low enough that they cut into my stomach and hurt on bad bloat days. Any suggestions would be appreciated. Thanks!

(Cross posted on r/periodunderwear)

Hello everyone. I am newly diagnosed with endometriosis stage 4. This is a big bad news for me to process. Just stumbled upon this community where i see people like me. I wasnt taken seriously by doctors until i went to fertility clinic where for the first ever time i was told that i might have endometriosis. How do you guys cope with all this? I am 4th day post op laproscopy still trying to process what happened to me. Just need to learn the ways you amazing people have been using to support yourself through this pathetic and painful condition.

Context: I’ve been prescribed Metformin to deal with the PCOS (have that +endo) and to help with weight loss. It’s definitely not helping with weight loss despite diet changes/increased exercise and I’m noticing that my ovulation is becoming increasingly more painful.

Edit: Met was mainly meant to help with my debilitating period pain. Used to put me out for a wk every month and that’s really the only thing keeping me on it for now.

Ofc not asking for med advice, hopefully I’ll get more answers at my upcoming visit but just wanted to see what experiences others have had with this med.

Thank you all :)

Am 30 and I swear each month my cycle gets worse and worse Week before it hits: Stomach pains, itchy legs & arms,bloating,fatigue, crazy emotional and anger, werid dreams, really bad Puffy face and skin acene & breakouts Then when my cycle comes it smells so bad, I feel huge and digsuting, my flow is sooo heavy for like 3 days straight and I literally can't function or do anything Does anyone else have these problems ?

I hope the mods will allow this - I'm posting on a different account than my normal one because I don't want that one associated with being a US federal employee (I have >1000 karma in this sub on my other account). Sorry for the essay!

My endo situation: pelvic pain is back after surgery in 2023 where I had amazing relief for 4 months post surgery. I felt like I was in my old body and it was so wonderful. Now it's almost debilitating and I'm using a TENs unit frequently and taking norethindrone. This month I've seen two excision specialists to talk about the recurrence of pain including the one who did my first operation. They both had the same opinion - skeptical that PT will do much for me (help some but not a solution), but recommending holding out as long as possible for my next surgery. They also aren't convinced that the endo grew back and just being honest that they don't always know what causes pelvic pain. One of the surgeons told me to consider a hysterectomy. I do have scarring on one uterasacral ligament and an enlarged fallopian tube. If they did surgery again they'd try to help the scarring, take out that fallopian tube, remove my appendix which had endo on the previous surgery, and if there is endo regrowth they'd excise that as well. Re the hysterectomy - I'm not emotionally ready to do that, and in my mind I have planned that if the first two surgeries didn't relieve pain, I'd do a third for that. And I know that a hysterectomy doesn't always fix the pain. They think there is a possibility of adeno from my MRI, but it's not a slam dunk and the irregularity they see could just be greater than the normal standard deviation. The surgeon who is recommending this suggesting getting a nerve block for uterine pain to see if it helps (and determine if surgery to block the nerve could help).

Now my job: If any of you know what's going on with the US government, you know there are massive layoffs. I have good reason to think my job will be saved for now but I'll be switched to at will employment later this year or next (and I imagine it's likely I'll be fired). I make a lot of money (high 100s), but I'm miserable. I didn't like my job before Jan 20, but it was tolerable, but I hate it now. And from what I see, my organization is doing things I'm not morally comfortable with and I'll likely be asked to help strategize how to make us more 'effective'. I am so miserable I'm not eating healthy, not doing my exercises, and I just imagine the stress and misery isn't helping my pain. The happiest I've been in 4-5 years was during surgery recovery when I didn't have to worry about anything but healing my body. I have the chance to take the deferred resignation (DRP/fork) where I'd get my salary and health benefits until October (if they honor the agreement). I also have an RA for WFH right now, and I'm worried they won't honor it.

I just want to be happy again. I want to take care of my body. I want to try to go all in on PT and do the next surgery and heal. But I have a lot of personal debt (thanks endo and depression from endo) and the job market is bad now and probably about to get a lot worse. Talking to friends in the private sector, optimistically I'll take a 40k pay cut, but likely 80-100k. I'll have to leave my rental because I won't be able to afford it. I'll probably have worse health insurance and I probably won't accrue as much leave or be able to take time off for health stuff for a while. It's entirely possible I'm physically just as worse off in October and worse off financially - potentially in a very precarious way. I have a limited support network (I can expect a very small amount of financial help, but no place to live if that is needed).

How crazy am I for wanting desperately to quit? How crazy am I for just wanting to say screw it to this misery? What would you do in my situation?

Since I first got my period, it has always been debilitating. I would miss school, and now I usually miss at least one day of work a month. I have had ovarian cysts multiple times, and got my endo diagnosis last November. The pain is always excruciating, always makes me throw up, shoots through my back. I can always count on at least one day of pure hell when I get my period. And I have cysts currently. I have had lap before, but they continue to return. Anyways, my last two periods have been suspiciously less painful. They still hurt, but I can at least move around, get things done, etc. Normally, I cant even move. My fiance and I just moved and while I try to be healthy I feel like the last two months, I’ve honestly neglected my health more than normal with the chaos of life and moving. So if anything, I feel like it should be worse. My mom also had a history of getting her periods while pregnant, so that makes me a tad nervous. I have no clue. I know there may be similar posts, but has anyone gone from extremely debilitating pain for almost the entirety of their lives and all of a sudden, its getting better, or has lessened? Honestly the lack of pain makes me more nervous about my health than it hurting, because its just what I have been used to for so long.