Hi everyone,
I already feel better joining this site! A bit of a babble coming your way but maybe my story will connect to some of you in some way
All my life I have suffered from the most horrendous periods which I started at 11 years old. I used to be physically sick from the pain and would have to take time off school which I hated. The volume of blood I used to lose I knew, even as a child, was not normal. But after GP after GP telling me and my mother I was just one of the 'unlucky' ones, I learnt to live with it!
I went on the combined pill at 16 which appeared to sort of help but I still would have pain and at least 7 days of heavy bleeding.
For the past 3-4 years I have been on no contraception (following trying the implant for 3 years) and noticed my periods were starting to be the old painful ones again. I had also been diagnosed with IBS and suffered from severe back pain and hip pain regularly. But again, I just dealt with it and shrugged my shoulders of it all.
At the end of July this year, I awoke on a Sunday in the most horrific pain (so much so I remember sitting naked in a cold shower trying to calm down). I deal with pain well but this was something else. My fiance took me in a cab to the nearest hospital (which was St Mary's in London - did anyone else have treatment here?) and I was misdiagnosed with a potential kidney stone. Hooked up to morphine and god knows what else the pain subsided after continual tossing, turning and panting. I felt ready to go home!
After a long wait, my scan results came back. No stone, but a large tumour/cyst (12cm) in my left ovary. Now, I am sure a lot of you have experienced this news too but GOD, they could break it to you a bit more calmly - the doctor nearly cried when she told me! I was absolutely devastated and incredibly scared...
Anyway, I was fast tracked into an op that week (I went under 5 days later which was incredible for the NHS and I cannot thank St Mary's enough). The severe pain I had been in had been my ovary twisting on itself and they were worried it would happen again. The cyst was removed after a 2 hour op (there were complications) and they also discovered endo on my uterus. Oddly, this was what messed my head up the most.
All these questions flood into your head: Will I be able to have children? Is there a cure? What will happen to me?
I was over the moon to keep my ovary (it was the first thing I asked when I came round, drugged up and delirious) but the endo was what was upsetting me so much.
I had great treatment, but I have to say the information and guidance was awful. I read up as much as I could and was shocked that nothing was explained to me following me op.
So here I am.
If anyone can give any information or detail on their experience I would love to know. I am about to start back on the combined pill and have been advised to take 6 months worth back to back (no breaks) - has anyone else done this? They said this should help in some way (how, I do not know).
Also, has anyone tried the endo diet and anti-inflammatory diets? I am currently trying to cut down on diary and red meat.
Also, how are people coping mentally? Since my op I have tried to have sex with my partner but have ended up embarassingly crying after... it is BIZARRE and I cannot explain it.
I am getting married next year (May) and the thought of this chronic illness affecting my chance of having children breaks my heart - we had not planned to have kids so soon but I now have this urge to try as soon as we exchange vows.
Much love,
Bx