Endometriosis UK
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My story so far

I have posted a few questions lately as there seems to be a lot going on in my body that I don't quite understand, so I just wanted to share how things have been so far. Well I am 23 and have been getting somewhat regular periods since I was 12. I don't really know exactly when I started getting period cramps to be honest. I remember a time when I could go about my business and not even realise my period had started. Anyway about 2-3 years ago I was diagnosed with IBS by the hospital in Italy and the doctor noticed an extremely low amount of iron in my body and asked about my periods, and when I told him they were quite heavy he said I should see a gynaecologist which I did not do, since stupidly I thought gynaecologists are for sexually active people and pregnant women, so I came back to London and forgot about it. About a year went by and my periods became heavier and more painful, and I started getting cramps outside my period, especially around ovulation time, i could tell I was ovulating by the amount of pain I was in. My hips hurt, as well as my back and I was constantly tired. I visited my GP who kept treating me for urinary infections, then I saw a different doctor within the same surgery who carried out swab tests and sent me for a scan which showed liquid in my Douglas pouch, and I when I went back to he surgery I spoke to yet another doctor who told me to go to the STI clinic even though I told her I am not sexually active. So outraged by her rudeness and dismissal I took my scan result and transferred to a different surgery. On my first visit with a doctor there I explained my situation and she told me straight away that she suspected endometriosis and I would have to see a gynaecologist at the hospital, so I did and both she and the head of gynaecology at the hospital also suspected endometriosis. I was put on mycrogynon 30 for 6 months on a try-cycle base (3 months consecutively before allowing for a period), the first 3 months were good, then I got my period and from there it was a downhill slide. I was in constant pain and it kept getting worse, before the end of the 6th month I was referred back to the hospital and I was in agony. I would wake up in the middle of the night crying in pain, My cramps were so bad I would have to stop breathing. I was in my final year of Uni and I my grades dropeed miserably as I was either alwasy in pain or on so many painkillers I would struggle to stay awake, looking back I probably should have taken a gap year. I was offered the mirena coil which I refused as I had heard too many bad experiences with it. I had a laparoscopy in November and they found non-active endometriosis scarring and numerous adhesions on both my ovaries, and at the review appointment I told the doctor who was also a fertility specialist from the IVF department in the hospital I wanted to wait about 3 years before having kids but what was her honest opinion about that to which she replied with "its better if you wait 2", that was in December 2012. I was discharged from the hospital and after a bout a month my pains came back, I was put on the pill again by my GP only this time it doesn't seem to be working as well as last time. I am still in pain and I have had irregular bleeding. Lately I have been in more pain, especially on my right ovary (feels like it's on fire) and my back, and suddenly my bladder started hurting so bad I have actually walked out of my office and spent the day in bed on the verge of tears. I also constantly tired and my hips feel so stiff. I saw a doctor yesterday (not my regular one as it was an emergency appointment so I got whoever was available), she was really nice and seemed to know what she was talking about. She tested my urine and found no signs of infection, on examination my abdomen wasn't tender but a little painful especially on my right side. She refferred me for an urgent scan and said once I had that done, unless they found anything I would probably have to be referred to the hospital again, and if the pain gets worse that it was important I didn't hesitate to go the the a&e straight away, that's all she would say but something in her face looked unsettled to me. I am now waiting for an appointment for the scan and hopefully things will be brighter form then on. I will keep you guys posted and hope you are all feeling better.xxx

1 Reply

Hi Romina

Wow bless you, you have been going through it haven't you! I am pleased to hear though that during the useless drs (don't they just do our heads in and make everything so much harder) you have had some good drs who have listened to you and are listening to you now!

I hope the appointment comes through quick for you.

Best wishes x


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