Endometriosis UK
36,178 members32,158 posts

long long journey

hi everyone

this is the first time i have written on here hoping to get some support feel bit lost at the momment. its a very long story but basically have suffered all my period life (now 37) with very bad period pain that cripplies me up makes me sick etc im sur you now the story have been hospilized once with it been very close to phoning an ambulance sereral times . In my twenties was misdiagnosed twice and when i told people friends and collegues about the pain i think they just thought i was a whimp!!! finally when i was about 30 i had a lap and had bad endo on my bowel, uterus and my ovaries and one ovary is stuck to my bowel. have a lots of different treatments zolodex injections, prostap and preveria tablets and a op to remove nodules and cysts. had all this inbetween 4 failed attempts at ivf as unfortunatly the endo has made it very hard (miracle) to conceive as because it om my ovary my eggs are rubbish and the sperm cant penetrate them. I am currently on the pill for 6 months continus as we consider if we want a 5th attempt of ivf but unfortunatly after every trratment the pain comes back after a few months and work are now getting very very fedup at my sick time hence the pill, but my pill ends in feb so im dreading the pain coming back and my manager!! i do suffer with tiredness and bowel probs like ibs symptoms too witch are always better on treatment. well thats my story xx any advicexx

6 Replies


I know you said that your endo is spread in quite a few organs, but its worth to find another great endo gynae and check for 2nd opinion. You never know, sometimes some doctors are more experienced and have different medical approach. I was saved when i went for 2nd opinion.

Try the endo diet too, you can find all about it online, it will help you with the pain, its quite strict and give it a few weeks to work. xx


thankyou i will try thatxx


Hi ni-Nicola,

Just wated to send you a hug, I relate to everything you have said. I think the thing I have always found hardest is the aspect to trying to communicate pain to friends, family and work colleagues. After my diagnostic lap I remember telling one of my best friends abouts my diagnosis, I have sever and very deeply infiltrating endo, when I explained the diagnosis and the disease to her she laughed and said she always thought I been exaggerating, seriously people really don't have a clue. She has just been diagnose with breast cancer and after her mastectomy they keep her medically aneic to encourage we body to heal. I have always been anaemic from heavy bleeding and as she started to tell me about how tired depressed and awful she felt all I could was say that I understood and she kept insisting that I didn't, when I told her what my iron levels were at my last blood count she was totally stumped as they were below her medically induced levels.... Why do people refuse to believe how sever this disease is????

Can I ask Hun if the ni in your name stands for Northern Ireland? If so there is a great group of ni girls over on fertility friends who are all going through ivf and inbetween cycles. We 're a great support for each other and share valuable knowledge about the clinics and surgeons available to us over here. If you want to come and join us let me know and I'll post the link to out thread.





no its just for my name i live in england but thankyou for your comment and your supportx


Oh it's awful isn't it? I wasn't diagnosed until after several decades of hell and I actually gave up telling female friends that I had really bad period pain because they would just tell me I should exercise or eat some herb or other or whatever, presumably assuming that I was feeling what they usually felt and I was just being moany.

I remember one member of my family saying she had bad period pain. I asked her what painkillers she had taken and she said none because she didn't believe in them! I made her take 2 paracetamol and she was instantly back to normal. Can you imagine having 'bad' period pain that could be solved by 2 paracetamol?!

Ah well, sorry things are so rough for you atm. I am actually so relieved now to be past the stage where getting pregnant was something I could try for. It was so unbelievably stressful, I really feel for you going through all that and endo as well and trying to work too, that's such a huge amount to cope with.

Of course it does make me sad that I don't have children,, but I am beginning to accept that some things just don't happen for everyone.

Chin up and hugs for you




thankyou so much for your reply i am sorry to hear your story too thankyou for your support I am beginning to accept that too and i am pleased that there are people who understand because sometimes you do feel like you are going mad

hug to you tooxx


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