NCCAH Diagnosis Journey & Dexamethasone
Hello! Sharing my NCCAH diagnosis story and seeking advice on medication management 🫶🏼
I (f24) have had a long history of mental health issues and heavy/abnormal periods, all started during puberty in 5th grade.
By the age of 12 I was diagnosed with severe depressive disorder and general anxiety, I was in-patient and subsequently cycled through Prozac, Zoloft, Celexa, Lexapro, etc, none of which ever worked for me. There were times as an 8th grader I’d have to stay home from school because I wasn’t dosed/switched from meds correctly and would be bed-ridden with withdrawal symptoms. (no fear, my former psychiatrist is no longer allowed to practice 😅)
Around the age of 16 my mental health improved naturally and without prescriptions meds, instead taking a large variety of supplements/vitamins I was found deficient in (B12, B3, C, D, Iron, Magnesium, Omega 3’s)
Turning 18 and going to college I stopped with the vitamins because I couldn’t afford it/hated taking 7 pills a day to feel somewhat normal.
Also got a Kyleena IUD placed at 18 when going to college, it had no effect on my mental health but did improve my heavy periods and irregularities.
Fast forward to 23 yo, and I begin experiencing sharp and severe lower abdominal pain. I would describe it as being stabbed, honestly. Would stop me in my tracks and bring tears to my eyes, often took my breath away.
In conjunction with the stabbing pains, I began having trouble eating. I felt so inflamed and like my stomach physically couldn’t hold food, despite only being able to eat one meal a day, and I’d often have to space it out to avoid the inflammation pains. This went on for 4-5 months.
I began experiencing insomnia as well (2-4 hours of sleep every night, for 4-5 months straight) and always felt “wired”. I was hyper-aware of my surroundings/what others were feeling/doing, and it consumed me to the point of paranoia. I always had pain in my jaw/teeth from carrying tension there, and my chiropractor was none too pleased with adjusting my neck/shoulders from strain.
I’ve always been a hairy girl, partly due to distant Native American heritage. However I began getting more thick and frequent hair growth in my midline as well as “beard” area of my neck and face.
Painful acne began spreading across my upper back/shoulders & the “beard” areas of my face and neck, despite washing every day.
All in all, in the span of 5 month I felt like I was deteriorating at the age of 23. Paranoia, anxiety, and depression were to the point of “no return”, and I was desperate for answers. I was barely eating, barely sleeping, and in pain almost every minute of the day in some form or another.
After meeting with my gyno and trying to figure out the issues, she did a TV ultrasound and reported that my uterus and ovaries were certainly inflamed and a source of my pain, but I didn’t have PCOS. She diagnosed with PID and referred me to an Endo.
After one meeting and some labs with my endo, he diagnosed me with NCCAH and started me on .5mg Dexamethasone immediately.
Within 2 weeks the mental health issues went away. I remember crying when I realized how quiet my head could be, and I realized I hadn’t felt this way since before 5th grade.
My acne has since cleared and hasn’t come back. The hair growth has slowed a very small amount, but it’s making progress. I’ve never slept so good in my life and I enjoy eating now.
All in all, my Endo’s diagnosis and the dexamethasone has saved my life.
However… since starting it 5 months ago, I’ve gained 40lbs, and I often experience water retention/distension after eating any amount of food. I’ve had to completely trade in my closet because nothing fits, and when I look at current pictures I struggle to recognize myself. I’ve been 130lbs since 8th grade, with less than 10lbs of fluctuation until I started Dexa at 24yo.
On a weirder note- on Dexa I often get severe leg/foot cramps, is that a thing?
I LOVE the dexa for showing me my body CAN function, because I really needed that. But I’m struggling with the side effects and feeling like myself, even though I’m the most myself I’ve ever been.
Any advice or shared experiences would be much appreciated 🫶🏼 I’ll include my labs pre and post dexa!
Pre-Dexa (02/13/26)
3 months on Dexa (05/19/26)