u/Hefty-Poetry-6944

I want to start by saying I feel immensely privileged to be received high quality medical care. But it feels like every test ends with "needs further testing to diagnose" or "needs referral for treatment". Like the chase is never ending, I am always having to keep pushing myself to crashes just to get treatment. And now tests are showing I probably need 2 surgeries for palliative care, but how can I handle another surgery when I'm getting worse? It truly feels like there's no end to seeking treatment, it's never a simple test simple answer, and ai am so exhausted. It's hard not to just gice up.

Does anyone have experience with reacting poorly to regular dose abilify, but being helped by LDA. I am not bipolar so abilify causes deep psychosis for me. I'm curious if LDA would give me the same reaction or not?

I had my gender affirming hysterectomy on monday 06/15 after 20 years of waiting. I ALWAYS read all my medical and chart notes from all appointments and procedures. I was reading my post op notes and they put in there that I have "clitoromegaly". I googled it as I've nevwr heard the term, and it means abnormally large clitoris. I got diagnosed with big dick disorder during my surgery. Just something I found hilarious and wanted to share 😅😂

I am fairly positive I am severe. I am almost fully housebound, onlh leaving for required medical appointments which is only once or twice an month and I always have PEM after. While home I am fully confined to me bed, only using my wheelchair to go to the bathroom. I live in darkness, no light in my room. I can't watch tv, or use audio on my phone. I can only tolerate short conversations and need breaks. But, I am on my phone(with sunglasses and a red screen filter) pretty much the whole day. It's the only consistent stimulation I have and even then I still take breaks throughout the day. I just feel like being able to be on my phone means I'm not severe and am under leveling myself. Any thoughts?

I got top surgery in 2019. I had been out for 7 years at that point and it was a long time coming. I was so grateful to grt top surgery and feel more me. Except, my surgeon messed me up. My scara are uneven, my nipples are fully asymmetrical and wildly mishapen, and half of my chest is concaved it from them removing EVERYTHING! They did not sculpt to my body like needed. I got top surgery in 2019 and I have never been out of my house without a shirt on. I've never gone to the beach amd felt the sun on my chest, never gone to pride with my scars out, just haven't experienced having a chest thay I'm comfortable with. I am getting a revision, but that will take a while. Does anyone have any tips for navigating dysphoria from top surgery? It's not the same as normal chest dysphoria before surgery. Any advice or kind words would be nice.

Hello! I've had knee pain my entire life. Crippling knee pain thay put me in a wheelchair at times. They initially told me Patellofemoral Disorder and put me into PT. It never helped. I spent 10 YEARS fighting for help and begging for an MRI. And after 10 years I finally got an MRI, and it showed the things the x-ray couldn't. I was diagnosed qith trochlear dysplasia and had knee surgery on both knees. My knees are the least of my problems now and I was a lot steadier after. This post really is to say 2 things. 1: Trochlear Dysplasia is not uncommon, and can explain poor knee health on many people of all ages. 2: Continue advocating for youraelf, speak until you have no voice, demand to be helped, find new doctors, just don't gove up. Oh and 3: X-Rays don't mean shit on a knee that isn't broken, get that MRI.

Got my funcap for the month, and it's dropped again. I hate seeing this number go down. How do you cope with getting worae?

Sometimes if I have to pushcmysekf, I can do some rhings like physically in the moment. I always pay heavily for it, but it makes me doubt my ME level because oh I was able to walk to the bathroom 5 feet away because my wheelchair waant usable in themoment. Am I actuall fine because I can force myself?

I've been moderate for about 6 months now, but fear O am alipping into severe.

I lay in bed all day and only get up for the restroom. I am brought ally drinks and meals to my bed. I can not watch tv or videos, but can toleratey pgone when weaeong my readers singlasses. I have severe cognitive impairment and lose my thoughts within seconds, and my dexterity is garbagw hence the typos. I use a powr chair in my home amd outside. I leavey house about 1x per week for doxtors appointments because I have so mamy to do. Mu PEM puts me flat on mh bed in order to recover. Am I encroaching on severe?

Hello! I have moderate-severe ME/CFS and am finally getting my gender affirming hysterectomy. I was wondering if anyone here has gone through one with ME and has any advice? My last surgery is what put me from moderate to moderate-severe so I am nervous. Also amy hormone issues I should know about? I have been on T for 9 years and will be on ot forever