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Followup To
Question -
HI, I WOULD LIKE TO ASK SOME QUESTIONS. I HAD PROLAPSE AND HAD THAT FIXED 3 TIMES, BUT EVERYTHING IS HOLDING UP WELL BUT I HAVE 1 BIG MAJOR PROBLEM THAT IS LEAKAGE, IT NEVER STOPPED AND AFTER TESTING THEY DETERMINED THAT MY PROBLEMS ARE NEUROLOGICAL AND I AM HAVING A TERRIBLE TIME UNDERSTANDING THIS MAINLY HOW I CANNOT LIVE WITH THIS! i EXPECT TO HAVE A CERTAIN QUALITY OF LIFE AND THIS WOULD NOT FIT AT ALL! i HAVE REPEATED BLADDER SPASMS AND I HAVE A PATCH ON MY ABDOMEN (OXYBUTROL) AND ALSO TAKE DETROL TO CONTROL THE SPASMS, BUT ITS STILL NOT HELPING AND I KEEPING GETTING REPEATED INFECTIONS IN THE BLADDER WHICH ARE VERY PAINFUL AND HAVE TO STAY ON ROUNDS OF MEDS FOR 10 TO 30 DAYS !
i ALSO SUFFER FROM SEVERE MIGRAINE HEADACHES IN THE MIX OF THIS AND I TOO AM A STUDENT WITH CHILDREN TRYING TO GET MY BS DEGREE AND I FEEL I WILL BE 80 WHEN I AM DONE AT THIS RATE!
I THINK I TOLD YOU EVERYTHING, PLEASE COULD YOU WRITE BACK MAYBE WITH SOME SUGGESTIONS AS I REALLY FEEL LIKE I AM GOING IN A CIRCLE WITH THIS AND I FEEL HORRIBLE AND THIS IS THE MAIN PROBLEM AND THIS IS TERRIBLE , FROM THE LEAKING MY UNDERNEATH IS BAD AS IN VERY PAINFUL AND IT BURNS AND I'M VERY UNCOMFORTABLE I HAVE TRIED SOME CREAMS BUT NOTHING IS HELPING MAYBE YOU HAVE SOME SUGGESTIONS ON WHAT TO USE PLEASE!
O.K WRITE BACK SOON !
tHANKS
KAREN
Answer -
Hi Karen: Very, VERY sorry to hear of the difficulties you've encountered. I certainly understand the frustration of repeated surgeries yet still having to deal with residual problems (been there, done that, doing it still).
I'm not real sure just how helpful I can be; wondering what kind of doctor you're seeing (gyn, urologist, or urogyn?) and if anyone has suggested the possibility of a neurostimulator? FYI, check out:
http://www.medtronic.com/servlet/ContentServer?pagename=Medtronic/Website/Condit
Re: the discomfort from the spasms, have you tried muscle relaxers?
For the "raw" skin, you might look into Calmoseptine (if you haven't already). Supposed to be especially good for this sort of thing:
http://www.calmoseptineointment.com/
As I said, I so understand what you're going through. I hope at least that you have a sympathetic and committed doctor on your side. I have been very lucky in that regard.
Please let me know if I can do anything further to help you. If you'd just like the support, encouragement, and/or advice of other women living with prolapse, please check out the UPRISE message board at:
http://www.http://prolapse.hyperboards2.com/index.cgi
Warm regards,
Catherine
HI CATHERINE,
PLEASE I JUST CAME FROM MY DOCTOR'S APPOINTMENT AND JUST RECEIVED SOME BAD NEWS! I FIGURED THIS WAS GOING TO BE THE ONLY SOLUTION TO MY PROBLEM ANYWAY BUT I DID NOT HERE IT OUT OF HIS MOUTH! i KNOW MY DOCTOR ON A PERSONAL LEVEL AND THAT IS NOT A GOOD THING I THOUGHT IT WOULD BE, BUT I WAS MISTAKEN! i WAS TOLD THAT I DO NEED INTERSTEM THERAPY AND I WAS BEING VERY STUBBORN ABOUT IT AND I WAS ALSO TOLD THAT DUE TO MY PROBLEMS BEING NEUROLOGICAL THAT THIS MAY NOT WORK FOR ME EITHER SO PLEASE ITS NOT 100% THAT IT IS GOING TO BE FIXED! HE WAS NICE ABOUT IT BUT VERY FIRM AND ALSO HANDED ME A LIST OF THE CREAMS THAT WOULD HELP WITH THE SKIN THAT IS SO RAW UNDERNEATH. WELL WITH THAT, I HAVE ANOTHER DOCTOR FRIEND WHO IS AN INTERNIST AND HE RECOMMENDED THAT I SEE HIS BUDDY WHO IS A TOP UROLOGIST, MY PRESENT IS A UROGYONO AND HE IS ALSO AT THE TOP BUT I WAS HURT THAT HE SAID I WAS BEING STUBBORN I HAVE TO PROCEED VERY CAREFULLY THIS TIME WITH THIS SURGERY AS I DON'T HAVE MUCH OF A SUPPORT SYSTEM HERE, I AM MARRIED BUT I HAVE NO SUPPORT SYSTEM AND I WORK 2 JOBS AND GO TO SCHOOL AND RAISE KIDS AND HAVE BILLS TO PAY SO I CAN'T JUST STOP WORKING SO I AM TAKING ONE DAY AT A TIME AND JUST PRAYING THAT MAYBE THE UROLOGIST WILL HELP ME WITH SOMETHING OTHER THAN THAT INTERSTEM THERAPY. hAVE YOU HAD THAT INTERSTEM THERAPY, I AM O.K WITH THE 1ST PART BUT THE 2ND PART OF THE ACTUAL PLACING OF THE UNIT INSIDE SCARES ME TO DEATH AND I DON'T LIKE IT SO I NEED TO BE COMPLETELY COMFORTABLE BEFORE MAKING THIS DECISION AND MAYBE HAVING ANOTHER OPINION WILL HELP ALSO. I MAYBE ALITTLE THICK HEADED BUT THAT'S O.K. IT'S FOR MY BENEFIT! COULD YOU TELL ME WHERE YOU ARE? I AM IN NEW JERESY, THERE IS HIGH EXPERTISE IN PHILADELPHIA JUST CROSSING OVER THE BRIDGE SO MAYBE THAT'S AN OPTION TOO. BUT I AM HOPING FOR THIS DOCTOR TO TELL ME SOMETHING. I HAVE NO IDEA HOW I COULD HAVE DEVELOPED NEUROLICAL PROBLEMS MIGRAINES, BLADDER SPASMS, ALL SEVERE, THIS DOC SAYS I HAVE NO IDEA WHAT THE HELL IS GOING ON WITH YOUR NERVOUS SYSTEM, MAYBE I SHOULD GO OUT AND SCREAM TO THE HIGH HEAVENS EVERY SO OFTEN TO GIVE IT A BREAK I DON'T KNOW! WELL , I WANTED TO GET BACK TO YOU TO LET YOU KNOW WHAT IS GOING ON WITH ME, AS YOU HAVE BEEN VERY SYMPATHIC AND HELPFUL, WHEN I SEE THIS NEW DOC COULD YOU MAYBE GIVE ME SOME IDEA ON WHAT QUESTIONS I SHOULD BE FOCUSING IN ON I WILL BRING NOTES DON'T WORRY ABOUT THAT BUT I WANT TO MAKE THE MOST OF MY APPOINTMENT AND TRY TO REALLY SEE IF WE CAN SEE IF THERE IS SOME ALTERNATIVE TO HAVING THAT SURGERY. THIS DOC SAID IF I HATE THAT INTERSTEM THERAPY HE WILL TAKE IT OUT IN THE OFFICE THAT'S PART 1. SO I DO HAVE THAT OPTION.
SORRY SO LONG WINDED TONIGHT!
THANK YOU FOR EVERTHING!
KAREN
AnswerHi again, Karen: Apologies for the delay in response; however, I personally no very little about Interstim and wanted to get my own doc's feedback on it. He says he's a big fan of it, when clinically indicated. (FYI, I'm in the Dallas/Ft. Worth area, and my doctor is head of the largest urogyn division in the country.)
I would imagine this is frightening to you -- it's very difficult to be able to put your faith in ANYTHING once you've experienced surgical failures (or results less than expected). It's hard to keep getting your hopes up.
I would encourage you to get that 2nd opinion; hopefully that will at least give you some peace of mind that what's been recommended is indeed a viable option for your particular problem. Fortunately, you ARE in a good area of the country where many fine urogyns are available. In the past, my doc has recommended Marc Toglia to others in the Philly area looking for a doctor.
I'm sorry that I can't be of more help to you. Please keep me updated -- I'd love to know how you're doing. You can reach me by e-mail at: kitcat2364@yahoo.com.
Warm regards,
Catherine
