Pelvic Pain Support Network
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confused have i been mis-diagnosed?

hi im new to all this.... i was diagnosed around 4 yrs ago with chronic pelvic pain syndrome & after a few years of being a gunie pig on meds iv now been on morphine for the past 2 yrs as i am only 27 atm its not something i want to be on for the rest of my life but if there is no way of gettin rid of the condition or the pain without the morphine if it works it works!!! around the time of diagnosis i had to have a laproscapy & they found 2 cysts on each ovarie but was told it should be nothing to be concerned about & shouldnt be linked to the pain that im having. so i went on my way not knowing much about either. 4 years on & the pain still there seems to be spreading in my body i went for another scan the other day & it shown the same 2 cysts but twice the size, was told again it should be nothing to be concerned about & shouldnt be linked to my pain. after coming home from this app being shocked at the size of them i did some research to find out all the pain i have & other symptoms are those pretty much exactly the same as those with people that have suffered with ovarian cysts. this makes me wonder if i have been misdiagnosed with chronic pelvic pain when it could really be these cysts as they have been there from the start? im only young & for the past 4 years been passed from pillar to post with the nhs.... any advice on what i should do from hear? any opinions would be appreciated

2 Replies


As the cysts are still there and bigger, I would get copies of the scan reports: were these ultrasound or MRI ? If ultrasound you can get a copy of the letters from your GP. If MRI you should request the images from the hospital which they can provide on a CD along with the written report.

Are you taking the pill or any hormone treatment at the moment ?



Really sorry about your pain and am shocked that you have been put on Morphine, this is not a solution. Cysts can be very painful and I think you cannot settle for being told that no further treatment is needed. Ask your GP for a referral to the gynecologist (not the same person you saw before, you need fresh eyes) and arm yourself with a list of questions that you want answered. If you can afford it a private consultation may help as you get 30 mins of a specialist listening to what you are saying, you'll need reports and your last U/S (it costs about £180-£200 for a private consult), once you have info you can go back to GP. Good Luck PS. I hate to recommend private healthcare but sometimes when you have been passed from pillar to post then you need someone to spend some time with you.


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