Re: New diagnosis - Karen

From: Jo Eslick (wallamara@hotmail.com)
Tue Dec 4 19:18:40 2001




Welcome to the board Karen

I am sorry that you too suffer with adhesions, it is a hard thing to come to terms with when you first get the diagnosis.  I am so happy that you are in such a helpful and caring work environment, that is very rare indeed!

Yes, if you have had your uterus & ovaries removed, then it is quite probable that you have adhesions on your bladder.  The most important advise any of us can give you is to avoid surgery!  Don't let a urologist perform a "stretch" if you are now experiencing bladder pain & needing to empty it more frequently.  Many of us have experienced bladder problems to varying degrees, and the common denominator mostly seems to be that the inside of our bladders appear health, but the frequency is due to the adhesions around the outside of this organ stopping it from expanding to it's natural capacity.  Our bladder is like a balloon and stretches as more urine collects in it.  When adhesions are covering it, it cannot stretch, because adhesions aren't like elastic bands, they simply act to restrict it.  This causes the outside of the bladder to become irritated and that is why I believe we have pain associated to our bladders.

I would strongly urge you to read the stories on the adhesions quilt mine is there too, as well as a lovely lady called Karla, please read her story because she now has a urostimy (sorry Karla if I have spelled that incorrectly) and she is the living proof why we urge caution in seeking surgery after surgery to rid ourselves of pain.  Please put your story there too, because the quilt acts as a useful source what can happen and indeed does happen when we start to seek cures for our pain.

I happened to have just had a very long conversation with a wonderful doctor in Sydney yesterday, who was very willing to answer all of my questions and he was happy to give me loads of detail and we chatted for an hour & a half!  He agreed with my decision not to seek more surgery and to instead look for a total pain management plan involving a number of health care professionals that I now see.

I have excellent access to adequate pain relief as well as a pain specialist to advise me on medication, side affects and to help me find the right combination of drugs & therapy to give me the best quality of life without surgery.  This team also includes an incontinency physiotherapist to find exercises that will help me to relax my pelvic floor muscles.  Yes relax them!  I was surprised when this was suggested to me, so I will explain it as in factto the way I remember her telling me.

Firstly avoid diuretic substances which make you need to urinate more frequently, these include coffee, Coca-Cola and alcohol.  It was then explained that  my pelvic floor muscles were infact spasmed due to the long and high amount of pain I have lived with in my lower abdominal area for so long.  Apparently this kind of spasm also influences the bladder and somehow it stimulates the urgent feeling to empty it.  Also the muscle just inside the vagina will can be spasmed and cause pain in the first instance of penetration.  The funny thing is, because of the occassional leakage I experience from my bladder, I have madly done pelvic floor muscle excersises for years!  LOL  So now, the physio will teach me different excersises to help me relax the pelvic floor muscles.

My advice to you is to find a specialist clinic similar to the one I now attend which specialise in endometriosis and gynocology.  These will be the people who best understand your symptoms & your circumatsances.

Don't hesitate to come back & ask more questions, but please remember we are not medical professionals, just fellow adhesion & chronic pain sufferers trying to help each other based on our own personal experiences.  So again Karen welcome, and I hope the information I have given you will give you a sense of optimism and an idea of what your next step should be.

Yours in friendship

Jo (Australia)


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