Diagnosed too late

I was in my late teens when I started getting terrible pains but my Dr kept putting it down to my age, growing up etc. They changed my pill and kept sending me away. It wasnt until I was in my eary twenties that they decided to actuallly investigate and low and behold I had extreme endometriosis, resulting in them having to take everything from my left hand side and making me infertile. Since then I have had to go through major surgery on my bowel, colon & bladder to "put" them all back together again. The surgery has resulted in damage to my ureterwhich now causes kidney problems & have had 3 stones removed. I cant help but think that an early diagnosis would have prevented all of this and given me a much better life overall. Im now 42, childless and still suffering from endo plus kidney problems.

6 Replies

  • Me too. I started getting terrible period pains in my early teens and was diagnosed with endo in my thirties.

  • aww hunny ,what a time you have have had ,i to suffered in my teen ,i had everything like IBS,eating disorder ,stomach problems etc ,took me till i was 30 to finally be told after collapsing with 10cm + 5 cm cyst .i struggled to concieve for 13yrs but after 11 fertility treatment and a lot of stress i have twin boys .So after 7yrs and 7 ops ,i had a full hysterectomy (at 37) last june ,thought that would be the end of it ,but sadly no ,still have leg/groin pain ,found i also have nerve damage on my spine .Never ending ,take care hunny xxxx

  • Hi Lainey, thank you for the reply. They wanted to do a full hysterectomy when I was 23 but i refused as was hoping there would be some chance of conceiving even though it was awfully slim. Back then we attended the Bath Fertility Clinic only to be told that the start off fee for IVF was £8000 and we just didnt have that kind of money. Since then my then husband and I divorced and I've not fallen pregnant with my partner since then so with age and endo against me I now know it will never happen. Its strange that you should mention nerve damamge to your back as I've been suffering badly with a trapped nerve down my left leg, they've now scanned and diagnosed me with two slipped discs but I have no idea how this happened except its all been since having major ops etc. I think if had four legs they would have put me down by now lol xxx

  • I started with pain and heavy bleeding at the age of 11, but was ignored until I eventually colapsed in my 20s with bowl problems, and they found I had endo and pcos. By then the scar tissue was all around my appendix, bladder, bowl, womb, ovaries and abdominal cavity. I had several hysteroscopies and laporoscopies and ablations, fibroaids also removed, and also a womb scrape due to complex hyperlasia of the womb, but its returned now in my 40s worse than ever, i now need to ware incontinance pants each month for 5 days, I am crippled with pain and bowl incontinance for 5 days a month, migraines, sickness and nausia, black outs and been unable to go beyond the house for 4 days and then it leaves me exhasuted. I have been left to get on with it, not under gyno anymore or on pills etc. I am finding it really hard to cope living on £63pw benefit due to this and other medical conditions

  • I also have back problems, degeneration of the discs and back pain

  • I tell my doctor everytime I go there for my pill that I have this and they just ask me if the pill is working in regulating me and thats all, but I still have really bad pain, sometimes the stories I hear really scare me, and I dont know what to do anymore?

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