I’ve been in agony for ages, it all started last April, pain in my lower left side that started as a dull ache but just got progressively worse. It’s around the hip, buttocks, lower left leg and sometimes as high as under the rib cage. After keeping a pain diary I’ve noticed it does flare up around the start of the month. I’d described it as if someone shoved a knife in there and left it. Then there can be burning and sticky, stinging sensations with it.
With it came bowel and bladder issues, extreme bloat and I’ve noticed my allergies have gotten really bad as if I’ve no immune system and I’m getting bad fatigue and headaches too.
It’s been diagnosed as IBS (but they wouldn’t examine my bowels further), then blood was found in my urine and a month later a tiny kidney stone was found and even though I said there was no way that was the cause as I have gallstones and know that kind of pain I was ignored.
I went private to an urologist who saw me for only five minutes, I listed my symptoms and he said it wasn’t kidney related. He brought up my file and said that stone was far too small to cause any issues. Still my GP wouldn’t do anything until I spoke to the NHS urology nurse who said the same thing and referred me to have my bladder looked at urgently due to the blood.
I ended up in A&E with the pain and they advised endo based on my symptoms but then a large amount of blood was found in my urine so they thought maybe the kidney stone had grown and was passing. I got a scan the next day and it was clear, kidney stone gone.
After that I was signed off work for six months but now back and WFH because I can’t afford to go on sick pay.
Been waiting over a year to see a gynaecologist,
During my time off sick I went private to a chiropractor, a gynaecologist, and a physio and got nowhere.
The gynaecologist said because I wasn’t describing my periods as agonising that I couldn’t have it. By this stage I’d been on the pill for about three months and I just said my periods have always been heavy and sore but I presumed that was normal.
I had a MRI and ultrasound and they were both clear so I was told I didn’t have it but I then discovered during an unrelated surgery I had in 2016 endo was found and removed from the same side my pain is (lower left).
I queried this with the gynaecologist and was told that I would need a laparoscopy as a MRI wouldn’t have diagnosed this type 🙄 this from a gynaecologist who said I didn’t have the symptoms of it and couldn’t have it.
I also went back to my GP and asked about it, I was told well sure it was removed so I couldn’t have it and that they knew nothing about endo to advise me further.
I can’t afford a laparoscopy privately so now Ive to try and take my gynaecology appointment forward through Benenden as despite all this I’m only down on the NHS as routine and it’s a 4 year waiting list.
I’m struggling a lot with work I’m in pain and I’m stressed and depressed. As my pain killers aren’t doing much (Naparoxen and Co-codamol) my GP has put me on Tramadol and I’ve had to ask for anti-sickness tablets.
Im just wondering how others feel right now because I just feel like no one believes me, is listening or wants to help me.