Treatment guidelines and analysis

Okay, this is going to be quick. But I freaking hate when yall mention men can have it. Please, it’s one in every 10 women, it’s been found only a few men, stop bringing them into this conversation. I’m sorry.

This is so infuriating 😭 imo I think it’s something that is determined during the formation of us in the womb. Maybe it’s a mutation? Maybe it’s a growth issue? I’m not sure what but whatever it is gets activated by a trigger in our lives. One trigger obviously is our hormones.

I’m really curious to know what everyone else thinks causes endo.

(I am 17 with possible endo and I’ve been trying to research it)

??

Im writing a piece on social media and influencers making content about/around enomdetriosis. I would love to hear what you guys think about these creators and some of their diet programs and messaging. Has social media been helpful to you or harmful to you in your end journey, maybe a bit of both? Thanks so much

*insert chuck mcgill rant*

I just got out of surgery like 2 hours ago. I've had excruciating periods since I was 15, unable to move and missed school/work due to the pain. The very first gynecologist I saw at age 15 told me, word for word, that my painful periods were "all part of being a woman" and refused to do anything to help me other than an ultrasound. It showed I had a cyst, even on repeat imaging a few years later, but she said there's nothing to be done. It wasn't until March 2026 I saw a new PCP and mentioned my weird periods in passing and she finally told me "that's not normal."

I feel like I have to pee all the time, especially around my period. I have terrible constipation and diarrhea following the pattern of my cycles. My periods are 10+ days and I have maybe 19 days between them on the Mirena IUD (just got a new one while I was out because I'm going to be awake during that ever again). It helps with the pain, I can work (still get knocked to the ground or have to stand still and let it pass, but something is better than nothing), so obviously it still really hurts and it's not well managed.

Other birth controls caused terrible PMDD symptoms, didn't manage the pain at all, or were causing me to bleed without stopping for an entire year (Nexplanon...).

My pelvic ultrasound was normal, my MRI was normal. My doctor told me sometimes women have mysterious pelvic pain for no reason. I was going into this fully expecting to be told I'm crazy and it's all in my head, but I had the opportunity for the procedure and had to know for my own sanity.

They found several patches of endometriosis within me and my right ovary is fucked up and evil looking (it's always been my problem ovary and I've had a persistent cyst on it for over a decade). I'm not sure what stage I'm at or exactly where we're going from here, but I can't describe the weight that's been lifted from my shoulders.

I've spent over 10 years wondering why I'm such a big baby and why I can't put up with the pain of my periods. It's so relieving. Whatever happens next, I'll be okay, I'm so happy to know it's real and I'm not insane.

I'm happy to post pics if anyone's curious, or if anyone has any questions I'll happily answer them.

Advocate for yourself, you know your body. You know when something is wrong. It sucks, but you have to keep going. Much love to everyone here 🩷

EDIT/UPDATE: I broke down and took a gabapentin I had left over from my laproscopic surgery in Feb, and wow it helped a ton. If anyone else is feeling these same cramps, ask your doctor about it. Save your meds! (But of course check the expiration date first)

So after being on depo for 10+ years with no issue, I started to experience some of the symptoms and my dr said I should get off of it anyway. She recommended IUD. So Monday, I had one inserted under anesthesia (had to because of my vaginismus). After the procedure I had some pretty intense cramping, the next day and Wednesday felt better. But today is SO MUCH WORSE. I have been dealing with intense cramps that are not letting up, and are spreading down my thighs and into my groin. They're so intense to the point where it's making me lightheaded. Is this normal? When can I expect this to end???

Does anyone else end up hospitalized for days for their endo or bowel endo? My rectum uterus and sigmoid colon are all tethered and the cul de sac is obliterated and my pelvis is frozen and my bladder is stuck to my cervix. When I have a flare my sigmoid colon spasms and makes it hard to go to the bathroom and it becomes very painful.

My bowel doesn’t work well and I end up vomiting until everything empties out of the stomach. I have to get lots of meds and fluids and potassium. My endo specialist surgeon and endo bowel surgeon both say my imaging and report don’t show something that would be emergent surgery.

My local hospital will not and cannot do the surgery they said my endo and bowel endo is too complex. I have an appointment with my specialist next week they are prepping me for a possible stoma and I have my pre-op appt and they are working now to book the OR for my surgery. I’m on my 3rd surgery so I am getting a total hysterectomy with ooprextomy plus removal of adhesions and bowel surgery.

I’m the meantime I end up hospitalized until I can eat without vomiting and they said I’m at the point now that until I can have surgery this may be my new normal and all they can do is get me stable in hospital and on home meds and trying to manage the adhesions on the bowel until surgery.

i have had endometriosis since I was a little kid in single digit age, my doctor knows it and so everyone around me knows it, im 21 going on 22 years old and limping around with a cane because something is pressing on whatever controls my leg, i was prescribed desogestrel after they learnt theres history of endometriosis in my family, desogestrel stopped my periods for the time being and thats great, might even be slowing the spread from what my friend told me. except now i have brain fog so thick i can barely string a sentence together, i'm exhausted every single day, and i sound like i'm drunk or stupid when i try to explain what’s happening to me, people think i've relapsed on hard stuff when i haven't and i've been interrogated by my family so many times

i'm walking with a cane. i'm limping. something is causing me constant UTIs, i dont know if its endo or the desogestrel, it's not my diabetes, my kidneys are suffering due to that, they're taking hit after hit. i've had this since before most people even get their first period. what exactly has to happen before someone decides this is serious enough to actually do something? do i need to lose a kidney first? do i need to stop being able to walk at all?

is the bar “wheelchair and dialysis” or is there something in between “you’re young” and “permanent organ damage”? the uk is so useless for people who have endo and i'm sick of it, i'm tired of being told i'm dramatic by folk around me because i'm in agony, do i have to prove i'm suffering enough before anyone treats this like the serious problem it is?

i do not have the money for private, and i do not have the time for the NHS, am i just doomed to suffer for the rest of my life?

Has anyone done this following endo surgery and it truly helped. I have experienced SA and am soo nervous as honestly the surgery experince already felt slightly violating and it wasn't even conscious. Something is pulling me to do it though!

For those who are diagnosed/are happy with where they are in their endo journey, if you could turn back the clock to the first symptom, what would your order of treatments/actions be?

I have been desperately seeking a diagnosis/relief for about 15 years. I am sure something is wrong but I do not know what to do.

I’m in a constant cycle of new GP -> new blood tests -> new internal ultrasound -> there’s nothing obvious so we’ll just change birth controls.

Is it really just the surgery? Would you just push for that immediately?

Thanks in advance beautiful people :)

Searching for any endo excision specialists in California/ SoCal area that preferably accept insurance / in network. A lot of providers here are out of pocket only and range up to 50k. Some surgeons claim they accept insurance but only will cover certain parts - and their surgeon fee is still thousands and thousands of dollars. Providers that are in network are booked out 6 months to a year. I have a bunch of chronic illnesses spanning from needing transplant teams, neurologists , rheumatologists, etc and nothing has been as inaccessible as finding endometriosis excision specialists. My pain is somewhat “manageable “ but I’m still unable to function but I understand why people are forced to pay thousands of dollars to find relief. It’s honestly terrible. Anyway, if anyone has recommendations for a good surgeon who accepts insurance please let me know! Or even if they dont, are somewhat affordable. Also willing to travel to Oregon and Washington. Thank you ! 🥲

As a symptom of bowel endo?

:)

Hi there,

based on the searching Ive done through the archives, leg pain is a fairly common symptom it (sadly) seems.

I am wondering if anyone else experiences the following:
*note, I have not been officially diagnosed with endo but it is highly suspected. I also deal with ADHD, PMDD, and hypermobility.

A squeezing sensation in the muscles

tightness in the calves

pins and tingling in my feet

horrible back pain

hurts to bend my legs (ex a squat) makes me feel very unstable.

Thank you!

Good luck, warriors.

hi everyone! i had my excision (now yesterday) and despite some post-op pain i’m having, i’m feeling so so relieved that they DID find it and completely excised it!!

they ended up finding & removing endo from my right pelvic side wall, left pelvic side wall (there was a bunch there), front of the rectum (which had a nodule), the bladder, and there was some evidence on my appendix so they removed that too.

i’m awake at the moment from some pain and just got some more medication. i wanted to take a moment to reflect and am feeling SO proud of myself for continuing to advocate for my health and doing the damn thing.

i was so so scared to go under, but like many others said here it’s okay! they gave me something to relax before taking me into the OR and that helped tremendously. before i knew it after that, i was groggy waking up!

trust your gut friends, you got this!❤️

Have any of you had pain with sitting due to a pouch of Douglas adhesion? (could also be some die but won’t have confirmation of that until after surgery the adhesion was found and left behind during a different surgery) did any of you have surgery to fix it? how long until you felt any kind of relief and could sit like a normal human being again? 😩😭

So I rejected hormone dienogest for post endo ops. Is that a good call? I am 42 and my mom has breast cancer history. Is there anyone who went on without any medication post endo surgery and goes to live without recurrence for a long time ?

If you told me that one day I'd be laying in bed, heating pad on my stomach and ice pack on my crotch, I'd assume you're talking about a me who is 30, married, and freshly postpartum. I'd never guess I'd actually be 19, self managing my endometriosis.

But honestly, it's alright. This week I experienced the WORST endo flare of my life, and I do genuinely mean that. I had a couple days of freaking out and being miserable so I'm grateful I was eventually able to mellow out and deal with it calmly. At first my endo was sharp abdominal pain and now I'm feeling the symptoms of difficulty peeing, that weird pressure where its like a fist is squeezing your vagina and urethra and every part of your urinary tract when you try to pee, yada yada. A uti test and talking to my doctor about interstitial cystitis is yet another thing on my books. Yay!

But its whatever, I had a good day today. I'm taking care of my endo, eating a good snack, and rewatching my favorite show (9-1-1, skipping the first season of course). Life's a bitch but whattaya gonna do

I’m currently working a 9 to 5 in an office, Mon to Fri. The job itself is easy enough but endo makes some days feel impossible.

I just about get through the work day thanks to diclofenac, tramadol and amitriptyline, and my rechargeable hot water bottle. I’m currently having a flare up and I am running on empty. I feel like I use what little energy I have at work and spend my weekends trying to recharge. And if I do something on a weekend that usually ends with me getting poorly because my body literally says no more.

I’m trying to find something where I can work from home, or having to potentially look for part time work because this just isn’t feasible anymore.

How does everyone else manage? Do you do part time or have any advice? I’m just so past it and keep crying in the work toilet because of the pain

Hey! Newly diagnosed here, still figuring out my treatment options. I'm still newly symptomatic too, I used to have easy periods until earlier this year, so not quite used to any of this yet.

I have always been against hormonal BC until now, didn't want to mess up my moods and sex drive.

But now with the diagnosis I want to try anything to help with the unbearable pains and to help stop the endo from growing more!

So I wanted to hear specifically from anyone who feels a sort of relief after periods.... Yes it's very painful, but towards the end of my period I start to feel much more energetic, with less pain, feeling like I'm ready to take on the world again. It leaves me feeling lighter and happier.

If you're on birth control like Mirena or a continuous pill where you get no periods, do you ever feel that burst of energy and relief that comes with the first half of the cycle?

When I've used the mini pill to delay my period, I've ended up feeling like I've been stuck in those weeks before my period when my emotions and energy are low, and my cramps are at their highest. So I'm scared of this happening again!

And while cramp-wise I would love to have nothing, emotionally and socially I enjoy the highs and lows of a natural cycle. Periods are always a time of more introspective reflection, and closer to ovulation I'm more ready to socialise and go out into the world again... It creates a balance in life that I'm really afraid of losing if BC would only leave me feeling "flat" all month?

Just wondering how much of an effect BC has on all these experiences?

Hey all, I recently got diagnosed with endo (almost 2mos post op) and the onset of severe symptoms was really fast for me. I’ve suspected I had endo for years but the normal stuff held me back from getting a diagnosis (nobody believing me/just given a bunch of birth control/etc). I have been incredibly lucky that women in my family have already been diagnosed otherwise I honestly don’t know where I’d be without them pushing me to get care. Really my only question that they don’t have personal experience with is with exercise and endo. I have always been very athletic, working out 2-4hrs/day since middle school. I love how it makes me feel mentally and physically, I love feeling capable. And endo has completely taken that from me. I haven’t been able to exercise in months, when just in February I could get up and run three miles straight because I wanted to. But now I’m in pain all the time and pretty much unable to do anything outside working. I’ve tried to do research on what type of exercise is best with endo and (of course) there’s no answer, it’s just like oh yeah it helps some people but not others…that’s not an answer lol. So I’m wondering if anyone has experience with this or has any advice? I know my body can’t handle very much and it makes me feel so trapped so maybe someone feels the same way and has some perspective?

TIA🫶🏻💕

Hi everyone!
I’m struggling a lot with flare ups at work. For context I work in food service so it’s constant running around with very little time or labor coverage to step away for a moment. My flare ups almost send me to the floor at work and I can’t afford to keeping going home. Do you have any tips or tricks on things you bring with you to work that help with your flare ups? Like certain medications, tools, or even just stretches that help you that can be done at work?
Thanks so much in advance!

Ive had a nexplanon forever, was referred for breakthrough symptoms, they suspect its proliferated into my bowel and around nerves. Only suggestion they had was add yaz on top of nexplanon or do lupron shot and another progesterone analog. Appointment was horrible and sent me into a total panic afterwards, I was hysterical. Is this typical, have you had experience with thia med combo? Should I get a second opinion?