Iv been off work since April last year, my mates don't understand endometriosis, they didn't believe me at first, thought I was making it all up, so I lost contact with them. I have two really good friends and an amazing boyfriend. But I feel so alone...I'm in so much pain where I can't walk far, I'm constantly bloating, completely exhausted physically and mentally for not being able to sleep from the pain.
So I don't get out much.
I'm so frustrated with the NHS and my current GP, Iv just been pasted to one post to the next.
At 11 I started my period, I was being sick, in absolute agony for the first few days of the period. At 16 I got put on the pill to control my symptoms and it helped a lot. Every so often since I was 11 I would be in pain with either my stomach or lower back, I'd go to my gp and get told I'd have a bladder or kidney infection (whatever was hurting at the time) and this was happening 4/5/6 times a year (a lot of antibiotics)
At 19 I started my new job being a support worker for autism in adults, I started in the Feb...in April I was signed off work for a " kidney infection" I went to hospital cause the pain got worse, got told my bloods and urine was clear there no infection, Iv pulled a muscle (considering I didn't lift at work, the service users I worked with where extremely independent, so I knew it wasn't that) I went to see another gp and straight away she said it sounds like endometriosis (first time Iv never heard of it) from there I had ultrasound and blood test for everything possible just to be sure.
About July time I got told I had a muscle thing in my back muscular de..something (again I don't lift or strain my back) so I got sent to a specialist, tried to get me to do poses and movements to strengthen my back, things you can't do with a bloated stomach..so complete waste of time.
I then had my first gynaecologist appointment where I got told it doesn't sound like endo, but I'm under weight so could be that but will do a laparoscopy just to be sure ( so being judged on my weight)
I had the laparoscopy on 14/12/16 and of course I had endometriosis, had the coil fitted and told it will never grow back (recently found out that it's a loud of poop)
I was pain free for 3weeks, then bleeding, pain, bloating. Everything came back... had my 2nd gynaecologist appointment,got told it can't grow back and it's my weight, I'm anorexic ect ect, had to have an emergency ECG
Of course this was very stressful and upsetting for myself and family as we knew I wasn't anorexic, doctors seem to forget reality, when your real with a flu or whatever, you don't feel like eating...endo is the same but there's no stop, feeling sick for being exhausted and from the pain, so appetite out of the window...but of course I wasn't beloved by doctors, I had to see a anorexic specialist...after an hour meeting on my own with strangers knowing the ins and outs of everything said there and then I didn't have an eating disorder of any sort.
Iv now FINALLY been referred back to the gynaecologist for endometriosis...but not till November
I'm not a doctor but I know my body, it's so frustrating that doctors do not listen and lie to people about endo, it can grow back at any point... I'm
Having the coil out next week as it's not helping me, I'm still bleeding and being sick on the first few days as it did before I got put on the pill, so having it out and going back on the pill to November..