u/lilac-glow

I got the blood results that showed my prolactin was 2000 in early March and have been waiting since to see an endo. The symptoms that brought me to getting tested in the first place were exhaustion and delayed periods. My periods still occur but sometimes are delayed by 2 weeks. Those symptoms started in November last year but have had other symptoms like sexual dysfunction for probably over a year.

I had another test shortly after to check my other hormones and it found I have slightly elevated igf-1. My prolactin had decreased to 1000 but still elevated. My other hormones, including adrenal function and thyroid were absolutely fine, as well as full bloods.

I also had an ultrasound which showed a small mass in my uterus (maybe fibroid, non sus), and a newly polycystic ovary which wasn’t on my previous ultrasound a year ago.

Since then, my breasts have grown and are almost always painful, I get almost daily sinus headaches, I’m always too cold or too hot, I retain fluid, my weight won’t shift, I have anxiety and depression, a strange feeling in my chest and throat, acid reflux, dry eyes, spots etc etc.

I finally got an endo appointment booked yesterday and will see the specialist in a few weeks, as well as a gyno too. I just can’t shake the worry that it’ll end up being something bad like cancer- something life shortening. I know prolactinoma’s are benign but my physical symptoms like period delays came on suddenly and have progressively gotten worse quite quickly (or so it feels). I have had symptoms that go back months, years even, like sexual dysfunction, dry eyes, depression and anxiety but I can’t help but worry I have some aggressive situations going on with how fast it feels things have changed. Can anyone relate? Please share your story!

The NHS is a bit of a post code lottery and some people have to advocate for years to be taken seriously. For those of us waiting, the lack of communication from the NHS can be tricky. So, what was your road to diagnosis on the NHS?

I’m waiting to see an endo in July, an MRI is supposed to be booked before hand but have heard absolutely nothing. I’ve had an ultrasound of my uterus and ovaries which shows a new cystic ovary and fibroid which wasn’t there a year ago, potentially impacts of the down stream hormone imbalance.

My head always hurts, my sinuses are always blocked, I feel off and tired every day, my period is no where to be found but constantly cramping, I’m fat and spotty and too hot and then too cold. I retain fluid so much that I barely recognise myself. My chest always feels weird and I have chronic acid reflux. Everything is too dry…everything. I can’t fuck or enjoy sexual activity.

I’m seeing the gyno about my ultrasound before I’m seeing the endo and I was referred there first!!! I just feel utterly let down and foreign in my own body. I want to advocate for myself but I don’t want to be ringing the doctor every day. It’s so fucking difficult. I just can’t take it anymore.