My story

[CherylPea]

I’d always suffered from problem periods which were painful and irregular. I married very young (20) and saw a gynaecologist who after tests told me I was not ovulating properly. I was very surprised to discover I was pregnant shortly after this time and had my first child after a normal pregnancy. Following a laproscopy for pelvic pain a couple of years later and was diagnosed in 1996 with endo with my right Fallopian tube almost completely blocked. I again fell pregnant and had another daughter and later a son without problem. I think having three pregnancies in 6 years helped and the symptoms did ease for a few years but gradually came back and worsened. Another laparoscopy in 2012 revealed stage 4 endo with damage to bowel and I was advised to have a sub-total hysterectomy and had the operation in 2014. The consultant left behind my left ovary and cervix and sadly whilst I thought this would be the end of things my symptoms actually seemed to worsen. I believe that because they did not remove the endo (or my ovary) it simply continued to grow and because I no longer had a womb it began to attach itself to other organs. I was told I would always have pain and basically had to put up with it ! After several gp visits I happened to see a locum GP who sent me for a scan - this showed issues with my kidney and after tests showed the function of my right kidney was 7% - with endo wrapping itself around my right ureter and also my bowel and cervix. The urologist operated and I now have a stent which has improved the function and saved my kidney. I saw another gynaecologist who prescribed zoladex injections but did not seem to know what to do with me ! I eventually went back to my gp and asked to be referred to another hospital who had a specialist endo unit. I had a furher operation in Feb this year to remove the endo and my left ovary and initially felt really well - the best I’d felt for years. Unfortunately this was short lived and I again began to feel pain - an MRI in September has revealed the endo has recurred (I’m not sure how!) and I am awaiting my next app with he consultant to see what my options are. Endo is such a debilitating disease and I often feel like I am unable to make plans as I don’t know how I’m going to feel day to day. However - I do know I’m very lucky to have had three normal and problem free pregnancy and healthy (now grown up children). I do feel like it’s never ending though and worry that both daughters have inherited this condition. My oldest daughter has been diagnosed with poly cystic ovaries and my youngest daughter has been hospitalised once during her period due to severe pain. Unfortunately she wasn’t scanned and sent home when symptoms settled as non specific pain which is now manageable due to the pill. I hope for them that they don’t have it - I do think there is a genetic link but in my experience isn’t something consultants seem to be concerned with.

[Niamhy]

Hi

I have recently just been diagnosed with endo but I have also got PCOS. It took me 10 years to be diagnosed with endo because I think my age was the problem because I was 15 at the time it all started. They told me I was to young to have any of these problems which isn’t true everyone I have met on here says they where also ignored by docs because they were young like me. I have irregular periods due to my PCOS. I’m really sorry the surgery has not helped you with your pain. I had my surgery on Oct 2nd this year. My pain still seems to be there but it is far worse than before. I have an issue also with my right kidney it isn’t functioning properly but I was told not to worry about it. When I had my laparoscopy the surgeon had needed to rush to an emergency at a different hospital so I still don’t know how bad my endo was or what it attached it’s self to. I got PCOS when I was 16 I knew I had but docs told me it was in my head even though I had all the symptoms. I was later diagnosed at the age of 19 with PCOS But I was put on the pill from I was 16 I’m now 24 & I’m still on it. I’m waiting to be seen by my surgeon again. They told me that they would be in contact. I hope you get help in some way x