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SHARING IS CARING


HI everyone,
I want to share my story because knowing what I know today it would have made a difference in the type of surgery I opted for, and if possible, I want to prevent any of you from having what I went through.

I had an enlarged uterus (double the size it should be) due to large fibroids that were in the lining so they could not be removed on their own. Painfull cramps, heavy heavy bleeding and long periods were the result of these fibroids, so I chose to have a hysterectomy and KEEP my ovaries.

I chose a vaginal hysterectomy (laparascopically assisted) because it was least invasive.

The operation was done on June 20th, 2011 (I am writing this at 6 weeks post op) and unfortunately it went about as sideways as it could have gone. When the surgeon went to pull my uterus out, unseen ADHESIONS in my body pulled part of my bladder, colon and ureter with it. So all of a sudden it was a full on emergency, they had to open me up abdominally and get two other surgeons in to do the repairs.

the colon healed just fine. thank God for that!

My bladder did not heal, and now at 6 weeks I have been diagnosed with a vesicovaginal fistula (VVF). This happens when two injuries are close to each other, and they heal together (they fuse). The end result is that you are incontinent and leak continuously - essentially my bladder and vaginal are communicating with each other via this shared healing they did together.

I am now scheduled for a second surgery (this time with a specialist at Stanford Medical Center) to do the VVF repair. This also has a Thank God factor as well - there are very few urologists in the US who are competent to do the repairs since VVF is so rare in the US. Apparently only about 50 people get it each year as a result of having a hysterectomy! So finding the right guy and getting him to agree to take me is a huge blessing and relief!

here is what I learned and would love if someone else can benefit from my experience

1) if you have a very enlarged uterus as I did, do NOT OPT for vaginally-assisted laparoscopic surgery!!! Instead, take the hit and have it done with an abominal incision. If i had not insisted on the less invasive method, I would not be in this boat today. They would have seen the adhesions, and been able to deal with them at the time. All of my Dr's agree on that point.

2) if you do end up with a complication, DO YOUR RESEARCH before you choose a solution. I used every resource available to me. as example - I pinged the American Board of Urologists (and they got back to me!) to help get a recommendation for a surgeon. VVF is very tricky - you want a Dr. who does alot of volunteer work in Africa, since VVF's are very common there (mostly due to very poor obstetrical care and long long labors.)

3) don't panic. There is a solution and you can find it.

I feel very confident that this whole thing will be water under the bridge soon, and that my second surgery will go well and I can move on with my life.

I hope that this story will help at least one of you avoid my experience. Only 1% of hysterectomies have complications overall, and only1% of those 1% end up with VVF. So chances are you will be OK, but hopefully my story will help at least one of you make the right choice.

Blessings to you all!

07-30-2011 - 11:49 AM


SHARING IS CARING


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