Discussions By Condition: Urinary conditions

Youssef's Syndrome?

Posted In: Urinary conditions 3 Replies
  • Posted By: onemore4gsus
  • March 30, 2007
  • 08:13 AM

Has anyone out there heard of this? Experienced it? (besides me)

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3 Replies:

  • Hi, I think i have it, Urologists and gynocologists have been trying to track down a suspected fistula for (it seems like forever). I have had numerous scans x-rays ivu, cystoscopy, halsalpingograms? laproscopy etc they still have been unable to find anything. I just yesterday came across the term Youssef's Syndrome, which seems to fit my symptoms almost exactly. I had a Lscs 5 years ago after a long and protracted labour, during c-section my bladder was nicked. so had to undergo bladder repair. recovery seemed uneventful. When my periods returned, i only lost blood when i went to the toilet. for a long time i refused to believe that i was bleeding through my bladder. Eventually, had to face reality and see someone, so 18 months ago stepped onto the merry-go-round that is the nhs. No-one has mentioned Youssef's syndrome to me, do consultants know about it? I'm scheduled for another cystoscopy on Monday, hopefully with both urologist and gynycologist there. Not altogether hopeful that they are going to find anything. please email me as i need to know someone else knows what i'm going through, none of the fertility sites have anything.
    Wellinever 1 Replies Flag this Response
  • Thank you so much for your reply! The more I look into this on the internet, the more convinced I become that it is my diagnosis. However, we do not have the money to go around to doctor after doctor, investigating what is going on, if they can find the fistula, waiting until the symptoms occur (monthly, of course), poking, prodding, x-raying, etc. I am a Christian, and I am believing that the Lord will heal me. In the meantime, I pray during the times my cycle is not here to prepare for the next one and believe that it will be "normal." Maybe you could ask the doctor who seems to be the most interested in your health (hopefully one sticks out among those you have seen) to look into the possibility of Youssef's Syndrome. Much of the research on the internet is only available to doctors. Before you visit, you could print out some of the information you have found as well, maybe highlighting the sections that apply to you. Your history of bladder injury sure sounds like a likely cause for a fistula. Fistulas themselves are common in Crohn's patients due to their abdominal surgeries. There is a test they can do to "find" the fistula that involves inserting dye into the uterus and "watching" where it goes on a scan. (I may not be describing it very well.) Basically, it can detect if fluids that normally flow from the uterus only through the cervix are flowing outside the uterus. Today is your appointment? Please let me know how it went. I found information by Googling "fistula" and "Youssef's" to be very helpful to me. Thank you again for replying.
    onemore4gsus 4 Replies Flag this Response
  • If anyone is still wondering about Youssef's syndrom, also called a vesico-uterine fistula, I have just managed to have it diagnosed after 13 months of hard work. The symptoms include lack of periods (menouria) and blood in the urine (hematuria) on a cyclic basis. This usually happens after a c-section.I had my daughter by c-section last year, and ever since I have had a lot of blood in the urine every month, but no period. The best diagnostic test was the Hysterosalpingogram, which showed very clearly the dye going from the uterus into the bladder.Since, an operation has separated both organs, and I opted for a hysterectomy so as not to have any more problems in the future, as I have had the 2 children I wanted ot have. There are some interesting medical articles on the net if either of the two names is typed in. It took me a lot of time and effort to get the correct diagnosis from the consultants, as no one had come accross this problem before!!!
    Nathalie 1 Replies Flag this Response
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