I need someone who understands. Contributed by amymag

hi my name is amy, im 22 and this is my story.

June 2004, i experienced a break through menstral bleed and was bedridden in serve pain. Once the bleeding stopped the pain continued to worsen. For the next month i was treated for every uterine infection under the sun, and after one month of constance antibiotics i was sent to my local gyno clinc. 2 Weeks later i had a laparoscopy and i was found to have endo. I had fresh and healed lesions in both my uterosacral ligments, deposits in my pouch of douglas and a patch to the right of my right uterosacral lig- it turns out it its this patch which is causing the most pain. The doctors burned what they could and when i woke up i was told i had endo, dont leave having kids too late and that was it. I have now had to quit my medical degree at uni, and for the last year i have faced each day in pain. Some days the pain is so bad i’m bedridden, other times im admitted to hospital.

It turns out i have had this disease since i was 14 and each time i complained to doctors about painful periods they told me to toughen up, which makes me want to scream since i have an extremely high pain threshold.They even took my appendix out cause they thought that was the cause of my pain when i was 18.
After my operation i began receiving a monthly depo-provera injection which caused more problems then benefits. My hair began falling out and still is, i experienced severe bouts of depression, intense back and leg pain, i began lactating, i developed an extreme case of acne and put on 20kg in 2weeks and i was going to the gym!!! I have to admitted not having a period was nice, but the pain didnt improve. So this yr i beagn taking zoldax, my breasts have gone from a nice c cup to a double d, the stretch marks on my breasts are really depressing, my acne has gotten worse- which is terrible because i was lucky enough not to have it during my teens. Ive put on a few more kilos and after all this im no better off.
Today i have been referred to a specilist in sydney but thats a 2month wait, and they are telling me they are going to do another laparo but this time cut out the deposits. But they cant guarantee this will work. I asked the doctor today what happens if it doesnt work and she looked at me and said long term pain medication.
So tonight i sit here ready to scream, knowing my uni career is slowing slipping away from me and facing a future of constance pain. I need some help from someone who really understands what im going through. My fiance has tried to be supportive, but the whole no sex thing is really causing him some grief. I dread the words do you want to fool around because each time we try i end up in tears, in agony and this is a minute into the whole ordeal. I feel fat, unsexy and seriously not in the mood and i wish he’d understand.
So plz if anyone can offer some help, words of advice or a shoulder to cry on id be forever grateful. Amy

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