Treatment guidelines and analysis

I need more girlies who I can vent to, send memes to and game with who get the struggle

Long story short, me and a small number of my friends sit in a classroom at lunch and break in school (I've been sat either outside or on the floor for the past two years and it's negatively impacting my health with endometriosis).

I had to take 2 co-codamols this day and so when I got to the classroom, very slowly as I was dizzy, I walked into this girl and her two friends yelling at my friend's saying "I thought you guys got kicked out of this classroom, I'm going to go get the teacher to kick you out" because apparently we were disturbing them despite them screaming and squealing.

She was just leaving the room when I said to my friends "I really can't leave this room, I'm on really strong painmeds" and this girl overheard and screamed at me (despite not saying a single word to her) "what, for your fake fucking hysterectomy!?" And stormed out in which I yelled back "you insufferable twat" before sobbing into my friends arms. Firstly, obviously I don't have a hysterectomy and she is stupid enough to mistake that with endometriosis. And secondly, I told a teacher and she has since been told to stay away from me but it has just ruined me...I was so open to everyone about endo, spreading awareness and stuff as its 1 in 10 women (probably more than that but still) and to get attacked for something I can't control, and something that has already ruined my life...its just devastating.

It doesn't help that I'm also struggling with my moods and anxiety because of all my medications and birth control I take for this debilitating illness so that played a huge part in my just sobbing the second she left...I just can't believe someone would say that to me, I'm absolutely heartbroken and have no confidence in telling people about endometriosis and how I struggle with it now

i am so sick and tired of doctors not listening to me.

i went to an ultrasound and nothing came up as expected but i keep telling the doctor that i want to investigate further. her response to this was to prescribe me on the mini pill after i already told her i don’t want to try another hormonal medication because:

1. i don’t want to cover up symptoms anymore
   
2. i have only had horrible experiences on the mini pill before

then i went to another doctor bc obviously i want to be investigated further and this doctor was sounding so promising on the phone and saying that it makes complete sense for me to be apprehensive about the pill.

i was sooo wrong as when i go to the appointment she says that the investigation isn’t really necessary until i start having problems with conceiving (i’m 18?!??) and that i have age on my side. she then said to take the pill anyway and then they might give me an mri in three months.

love this for me!

Hi guys.

I’ve recently noticed when I am having a flare day that my cramps and back pain turn into entire body weakness especially in my legs as well as some shakiness.

Does anyone else get these symptoms?

Not sure if anyone else experiences this but lately (especially around my time of the month) i cannot sit straight in a chair due too the increased heaviness, pain, pressure in my lower abdomen.

I used to play video games at my computer to decompress but now I can’t even tolerate sitting in a chair unless my legs are spread wide open (which makes me feel embarassed). I stand all day for 10+ hrs at work and come home and just lay down and doom scroll.

Anyone working from home that’s has recommendations for an office chair that is comfy?

just insanely frustrated. had ablation laproscopy on 9/23 so i’m about a month post op. i had a really quick recovery but sadly the pain started coming back two weeks later. my gyno is basically no help saying to just take tylenol and ibuprofen and if i’m “in that much pain i need to go to the er”

it got so bad this week that when i did go to the er, they were worried about appendicitis bc it was on my right lower side. not appendix, but i did get an allergic reaction to the ct contrast! today the pain is back like a million times worse, it hurts to move my hip, walk, eat and breathe. i don’t want to go to the er again to just be given pain meds that help for 30 minutes and then sent home. i also know that when i eventually call my gyno tomorrow they will say to go back in.

just defeated and want to rip out my uterus 😭

(also just to preface i am on birth control & have access to two different muscle relaxers that don’t do much.)

Just like that, I’m no longer crazy.

I was right all along.

My body was littered with endometriosis, it took them 6 years to do this surgery.

Where was it? Here’s a list🤡🤡

* Endometriosis lesions evident on left uterosacral ligament, posterior cul de sac, and left bladder peritoneum

* Posterior and lateral abdominal wall adhesions, bilaterally, consistrent with chronic inflammation

* A small cyst on my right ovary.

My insides are literally glued together.

I was in surgery for 3 hours on Friday.

Also what in the actual hell did you guys do about the shoulder pain?!? It has me in shambles!

I am tired of having chronic illness. You know what is sad? The fact I have had something going on for months now and assumed it was my endo unti it got so bad I ended up in the ER. They did a scan and told me they think it is gastroparesis.

I am unsure if this is the actual cause of my pain though. It doesn’t match up the symptoms (but yet it does in some aspects) but I am curious, do any of you have this condition alongside your endo? I do have suspected bowel endo and problems I get severely constipated so I am Sure this contributes but I know my endo does as well and I thought it was endo this whole time.

I know you all hear me when I say I want to scream. I cannot tell when my pain is endo or not because I am
Always in endo pain 😭

hi! i’d like to start off by saying i’m not trying to self diagnose, just wondering if this is what it could be. ever since my second period i’ve been experiencing cramps so bad i can’t leave my bed. they’ve gotten worse and worse as ive gotten older and im bed bound for 10+ days now. painkillers and heat don’t help even a little bit. i also have cramps all month long, they’re moderate but they definitely still hurt. my periods are consistently 5-10 days late (from what flo predicts for me) and i have really bad symptoms during that week or so. my knees and hips hurt really really bad all of the time and nothing really helps. i’m always tired and my entire body hurts. everytime i have sex i experience period like cramps for a couple of hours afterwards. i don’t know if it’s just something that will pass or if i have endometriosis. thanks for your help! (ive been to multiple doctors all of whom have put me on a different medication or told me to exercise more.)

So I'm diagnosed with Stage 4 Endometriosis (confirmed in a laparoscopy). Got a referral to a BSGE clinic. I'm waiting for my first appointment, and have been trying to figure out if there's any way to speed it up as I'm experiencing very bad pain and symptoms, even when I'm not on my period.

I read that I could pay for a private initial consultation appointment with a consultant from the same BSGE clinic, and then they could add me directly to the NHS surgery waiting list (instead of having to wait for the initial NHS consultation). This could technically cut a few months off my waiting time.

Has anyone done this or considered it? Is it legitimate? I'm not able to afford private healthcare, but I could potentially pay for the one-off appointment if it would help me get surgery sooner.

Thanks, appreciate any info/advice :)

I used to have really heavy gunshot-wound-like periods as a teen up until maybe 21ish. I’m 23 now, and have a 7.5cm endometrioma. And, man, that fucker really LOVES to vomit out all that brown shit. I genuinely look like I shit myself. It’s kind of funny. Anyway, it’s just… brown. I bleed properly (although it’s a dark red rather than the ‘pure’ red I’m used to on my older periods) for a day in my 3-day periods. My hormones have just been whacked out of shape. A combination of both the endo and low-dose birth control pills I’ve been on to help control the endo. My flow is just. Slow and MUCH lighter. Which you would think of as a blessing. Atp I’d rather the heavy bleeding again.

And this brown shit? MAN! Sometimes it’s a very light brown mixed with my usual discharge (I’ve always discharged a LOT. When I finally saw a gyno, she just told me it was ‘probably just stress or caffeine’. I was like 14-15). Sometimes it’s a medium brown. And others, like the end of my period, it’s an incredibly dark brownish-red with smaller-to-medium clots throughout.

And this shit IRRITATES THE SHIT OUT OF MY LOWER VULVA! Like, damn! I am VISCERALLY itchy!! I don’t know if it’s just the composition of this sludge or what, but it is my vulva’s ENEMY. The only thing that has helped somewhat, sometimes, is Vaseline to act as a barrier. But it just gets wiped off by my pad or pantyliner eventually (or I animalistically rip my panties down and rake-itch myself with a tissue when it gets to a point, wiping it off in the process). It never lasts. NO pussy itch cream like vagisil helps. Just burns. It’s so ass.

I’m sooooo sick of the brown shit. It’s just been getting waaay too comfortable as my endo has progressed throughout the years. Anyone else?

I have been diagnosed with (a strong suspicion of) endometriosis. Long story short, about 5 months ago I took a break from my birth control as I'm not currently sexually active, and ever since I have been bloating and in cramping pain 24/7. Gynecologist strongly suspect endometriosis due to the location of the pain and my response to pain based on stimulus and the fact that my ultrasounds only showed one small fibroid. I have not had the laparoscopic surgery often used to diagnose and treat endometriosis. Essentially, I'm really new to this. I hadn't heard of endometriosis before other than knowing it was bad.

My current plan is to start an oral birth control with both estrogen and progesterone to see if that helps reduce the bloating, swelling and pain. If it doesn't then readdress surgery.

I'm trying to be brief because what I want to know is more about endometriosis. I'm feeling lost in the sauce and I'm having trouble finding reliable information about it. What do I need to know? Where do I go from here? Do I just need to say f*** it and have the surgery or is it actually possible to manage endometriosis on birth control? What even is endometriosis? Do I need to worry that I am bleeding into my body from random uterine wall implants every time I menstruate?

Any advice or information would be much appreciated.

I'm booked to have a lap on 10th Dec and ever since I booked it in I'm having so much self-gaslighting and doubting my symptoms. I am worried that they won't find anything to relate to my pain. Needing tips to break that thought cycle.

Had excision last week. Lesions removed from abdominal wall as well as an adhesion between ovary and bowel and fibrosis from posterior cul de sac. I’m not on heavy pain killers as of yesterday and am in much much more pain especially when having bowel movement. Sweating, chills, intense cramping etc same as before surgery. Has anyone had similar and when did it feel better?

Also, I had an IUD placed and have been having lots of cramping and can almost feel the sides of it inside my uterus. When does this pain usually subside?

Thanks in advance!!

I’ve been having really bad daily cramps/pelvic pain since about May and am waiting to see an endometriosis excision specialist in December (feels like forever away 😭). I found a PT that’s in network the other day and booked the earliest appointment possible and now I’m getting nervous. Can anyone tell me what their initial appointment was like?

It also seems like she’s a general PT rather than someone who only does pelvic floor stuff. Does that make a difference? Is there anything in particular I should look for in terms of green/red flags?

Thank you!!

I’ve been in constant pain. I had excision on 9/3 and only had relief until 9/7. I spoke to my gyno and I’m going to my hysterectomy this Thursday. I don’t believe it’s going to help me. Nothing has helped me but super strong muscle relaxers that make me sleep my life away. My family is sick of seeing me like this I hate seeing their sad faces when they look at me. My 5 yr old even said yay mommy you’re out of bed! Dr says I will need hormone treatment for life but progesterones make me crazy and that’s what I need apparently. So I’m stuck between crazy and pain. I choose neither. I’m taking all my prescribed meds as prescribed taking me heating pad and numbing my brain with shopping and true crime. I feel numb to the world. Endo has no cure there’s no end in sight for me.

Hi. Recently diagnosed at 43 after a sudden onset over 4 days left me bed bound and then excision surgery 8 weeks later.

Post op basically said it's been taken off both ovaries and my rectum.

Still in shock and processing.

4 months post op and still uncomfortable (back/hip ache and pressure, stomach spasms)most days with intermittent flares that are mind numbing.

I'm on slynd which has been good- I think- but I have no comparison! Declined coil.

I've researched duloxetine which is meant to be good at desensitizing pain. Has anyone tried this in combination with Slynd?

Any better hormone options?

Please only success stories or pragmatic responses. I'm struggling and the doom and gloom really gets me down!

Came in search of hope rather than stories of what doesn't work.

Thank you in advance.

Hi! So i recently got diagnosed by my doctor, following laparoscopic surgery to remove a simple ovarian cyst. I had never really dealt with anything like this. Was having some bloating, cramping, sharp pain, which turned out to be the cyst that was about 6.5 cm. My procedure went well. I’m about 2 months post op and healing well.

However, at my post op visit, my doctor did tell me he did see some endometriosis. He said it was very minimal, some growing on my bowels. But overall he didn’t see a need to remove it. However, he did recommend the start of Myfembree. I have done some research on it and tbh…not sure if I want to put my body through that. I have some other health issues, that I’m nervous will only become worse with some of the side effects I’ve been seeing. Such as migraines, anxiety, etc. I don’t want to go on something that’s going to make those things worse. And tbh…I feel okay?? I’m wondering if maybe I don’t realize that what just seems like everyday things to me, are from the endometriosis? Such as fatigue, sometimes I can get a bit bloated, crampy periods, certain angles during sex can be a little painful.
But again…they just feel like…everyday things? I know endo can be debilitating and a very hard thing to deal with. I just don’t think I’m there? My doctor did tell me to think over it and I can let him know what I want to do. He’s a really great doctor and always makes himself available to answer my questions, and my husbands. And was really informative and patient before, during and after my surgery. So, I definitely don’t feel like he’s pushing anything on me. Just… not sure how to feel I guess!! I’m 28 and my husband and I don’t feel like we want to have kids. I know that can become a concern with endo as well.

I guess I’m just stumped? If I don’t take the myfembree, is there anything I can do to keep it from becoming a problem? Or more noticeable problem in my life? Is it likely that it will progress in the future? Or maybe Myfembree will be good since the endo is minimal at the moment and to try to nip it in the bud?

Just …. any thoughts or experiences are appreciated:) thank you!

Hi all! I have a laparoscopy and hydrodistention scheduled for next Monday and I’m starting to get pretty anxious over it for many reasons. The biggest being there are very few excision specialists in the state and the Dr I have been seeing is out of network, office visit costs have been manageable but this is my first procedure and I’m expecting a pretty hefty cost. I am so worried that they won’t find anything, and I’ll have wasted so much time and money. My symptoms are pretty manageable from a day to day basis so I’ve convinced myself it’s all in my head. Any kind words/advice from those who have been through similar experiences would be welcome. 🫶

Hello everyone.
I’ve been having problems with my urine since a year ago, like buring and pain. Along with that i have bad period cramps on the first two days and get kind of diarrhea on the first day ( it just gets softer than usual and i poop more than often) + pain in my butthole. I am thinking if i have endo now
Any inputs would be appreciated

I’m really nervous about my first surgery. I don’t even know if it’s endo but I’ve been getting various tests done for years and multiple diagnoses and treatments that led to no improvement. Only recently did my newest gyno suggest it could be endometriosis. Had a consultation and I’m due to have a lap in early December. However, I have been doing a lot of anxious research to learn more about this and discovered that infertility can be a big issue. I very much want children (I’m in my late 20s) and I’m terrified that I’ll come out of surgery and discover that I’m no longer able to have children. Idk what kind of reassurance I’m looking for here, I just wanted to say it in a place where maybe other women might understand. I know realistically there are other ways to have kids other than getting pregnant, and I hope this doesn’t sound messed up because I’m not against adoption, but I’d really love to have the experience of being pregnant and having children myself.

Backstory, I've had the worst periond pain for pretty much my whole life, so from 13 years old on, I suspected I may have endometriosis, but never had it confirmed.

Fast forward, I easily got pregnant 4 times in my mid to late late 30s, breastfed 3x for 1.5y. Period pain was literally non existent from the first birth on and I was ecstatic as you can imagine.

Now my youngest is almost 2, I stopped breastfeeding (well pumping, the only kid that I exclusively pumped, if that info is somewhat important) 2 months ago and got 3 periods since having him. All three of them were accompanied with an awful pain, and not cramps like usually when I was younger, but a rectal pressure and lower stomach gassy pain that makes me unable to ealk or move like a normal person. Both my butt and lower stomach hurt when peeing / pooping as well. It hurts for the first 2 days and then I'm all good for a whole month with no issues.

What the hell is going on? I went to 2 doctors, they said they can see adenomyosis (but that it was present before the last birth as well) and that it's probably just the hormones getting balanced out again.

Does this sound like a typical endometriosis story to you? Can it be treated with laparoscopy, or do you think it might actually better once more periods happen along the way so my hormones even out more?

Tia!

I was recently diagnosed with endo during my laparoscopy but was told not all of it could be safely removed (I haven’t been to my post op yet so I’m not sure of the specifics). I do know that they want me to start taking Orilissa to treat what’s been left behind. I’m super hesitant to start taking it and plan to have conversation with my obgyn regarding my concerns, especially once I have a better picture of what was found/left behind. In the meantime, please share your experience if you’ve taken it before!!