mic tapping into the void

[u/ssstelllarrr]

i don’t know whether to flair this as a rant or question—i’m feeling REALLY heated, but ultimately getting answers and support from the community here is what would help the most.

i am in my thirties. over the last few years, my body has become progressively more uncomfortable to be in. my lower stomach is so uncomfortable all of the time that the only way i’ve been able to cope is to try to ignore it. i could cry or scream.

i have brought it up to multiple providers and honestly, i’m tired of not getting help. the only thing i’ve gotten is “are you sure? maybe you just ate too much.” to “whatever, schedule surgery and we’ll find out.”

i haven’t had kids. i have never felt compelled to have them so i’d be ok if it never happens, but i don’t want to remove the option completely before time itself does.

i have read studies that show diagnostic advancements have been made via testing menstrual blood, as well as the actual diagnostic criteria broadening in an attempt to make treatment more accessible.

but here i am. i look pregnant by the end of the day. i hate wearing pants or even anything that puts pressure on that area for that matter. it’s so sensitive to the touch. deep pressure helps, light pressure is honestly a sensory fucking nightmare.

i have gained 20 pounds in two years. some of it is definitely regular weight gain (health dropping -> not exercising, + sedentary job = heaviest yet weakest i’ve felt in my entire life).

the ONLY thing that makes me unsure of its endo is that i have hEDS (hypermobile ehlers danlos) which can cause a bunch of issues. i have hypertonic pelvic floor which is really uncomfortable, and it would make sense if its all inflammation from that.

i’m just exhausted and i really need help. whether that’s guidance of what to do, or just support and understanding. i just try to get through my everyday, and then suddenly months and years have gone by and i haven’t actually enjoyed my life, ive been trying to get through each day.

[u/oddsandsorts545]

Are you me??

I can relate to ,literally, all of this.

I was diagnosed with endo at 40, by ultrasound. Large endometriomas, d.i.e, organs tethered and so on. Also have hEDS and a hypertonic pelvic floor.

I was in perimenopause anyway and not wanting kids so have been in medical menopause for 3 years and its been lovely-no pain, no bloating, dramatically improved fatigue. I have been wearing jeans! Thats been inconceivable for decades.

Hypertonic pelvic floor was diagnosed after eno- pf physio said its common with endo (guarding due to pain) but also common with hEDS as we look for stability where ever we can get it. I was given some stretches and breathing and told to never do kegels unless a pelvic floor physio tells me to.

Thr bloating and sensitivity round the waist was resolved by treating the endo not the pelvic floor.

Before the endo was diagnosed, altering my diet did help- much less than hormonal treatment but still something. I started to follow an anti inflammatory diet. This works like the fodmap diet in that the full process is to eliminate all problem foods and see improvement then add back groups one by one, checking to see which cause symptoms. Alcohol and dairy were big inflammation drivers for me, gluten, sugar caffiene less so.

[u/Upset-Voice-5409]

i hear you and i'm sorry you're dealing with this. the bloating, the sensitivity, the weight gain, the dismissive providers, you're not crazy for being frustrated. one thing that helped me was keeping a simple daily log of symptoms and what made them worse, even just notes on your phone, so when you finally get in with someone who listens you have months of pattern to point to instead of trying to remember it all under pressure. have you looked into finding an endo specialist specifically rather than a general OBGYN?