Re: I'm new and need some help/advice
From: Sally Grigg (LostCst@mcn.org)
Tue Apr 15 13:58:33 2003
At Mon, 14 Apr 2003, AnnMarie wrote:
>
>Hi I have been commin on this web site recently to read any info I can
>find on pelvic adhesions. I"m 18 years old, and have had 22 surgeries.
>I was born with fluid on the brain and had to have a vp shunt put in me
>whne I was 5 weeks old, that I will have for the rest of my life, and
>most of my surgeries have been either been on my shunt ( which goes from
>my head into my stomache ) and gyno problems such as ovarian cysts, scar
>tissue from all my surgeries, and pelvic pain. I got my first period
>when I had just turned 10, and since then I have had increasing pelvic
>pain. Due to all the scar tissue and only having one ovay left
>becomming pregnant some day will be a challange.I lke most of you feel
>so drained that i dont have the energy or feel well enough to do the
>things normal 18 year olds do. Up untill now, my gyno has perscribe
>pain meds ( ie: vicodon, percocet ect.) but he doesnt feel comfertable
>prescribing them to me anymore due to my age and the risks. so i went
>to see a pain manegment clinic and will NEVEr go back. They were really
>mean, and told me that they were leaving to go to another hospital in
>june so there wasnt much they could do. I am now also seeing a
>urologist because the doctors found out through a cystoscopy I have I.C
>on my bladder also( just what i need more things to add to my pain) when
>i had my lapaotomy and laposcopies the gyno told me my whole pelivs(
>bladder, ovary, fallopian tube,bowels evrything.) was incase in scar
>tissue which was probably what was causing my pain, and now they told me
>I also have I.C on my bladder. I was just wondering if anyone knows of
>any good pain mangement in or near the Boston area. I REALLY need any
>help or info I can get if ANYONE can help please E-mail me or leave a
>message for me my screen name is SWEETLILQT913@aol.com Thanks so much
>for reading my story
> AnnMarie
>
>--
> AnnMarie
>
--
Dear Annmarie, Welcome to the Adhesions Board. I'm sorry I'm not a doctor.
Probably the best advice I can give you is for you to read the stories on
the quilt and past emails which will give you a good idea about all of us
and our problems with adhesions. Your medical situation sounds complicated,
but the adhesions cause agony as we all know. At this time there are very few
doctors who are experts in removing adhesions. There are a few. If I were you
I would email Dr. Wiseman and see if he could make a referral to someone in
your area, for some temporary relief. Unfortunately, the newest and best
substance is caused spraygel and is not yet being used in this country. It is
being used in Europe, so you could go to Germany to Dr. Kruschinski. His site is
http://www.EndoGyn.com I know that's a long way to go, but the worse thing you can do
is to keep having operations by doctors who are not adhesions experts. You
have come to the right place for adhesions, but the hard part is that you need
to do your research yourself. You need to take charge of your medical records,
read, read, read and ask questions. I'm so sorry. Life is not fair sometimes,
but we are here and this is the place to vent and cry if you want to. With kindest
regards, Sally Grigg