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Re: To Amanda and Teresa Re: bathroom pain
From: Heather (anonymous@obgyn.net)
Tue May 7 15:31:31 2002
Dear Bathroom Pain Group :)
I think that we are very unfortunate that doctors don't understand this
disease. I have seen several, as I'm sure all of you have, but even the
ones that seem understanding and compassionate lack the answers to my
questions. I have had many doctors say, "well, you know your body more
than anyone else...I don't know the answers." It is so very frustrating!
The best thing I can suggest is that we continue to do research
ourselves and share the knowledge that we find. I have found so much on
the internet. Although some may be completely a guess, I try and put
all of it together to try and make guesses of my own. They tend to make
more sense than the ones that doctors give. I am going to get hormonal
tests tomorrow from an endocrinologist...have any of you heard anything
about adrenal hormones and the relationship to endo???
Hope you all are having a great day! Remember to keep your chin up :)
-Heather M.
At Tue, 7 May 2002, Amanda wrote:
>
>Selisa:
>I also feel that doctors don't believe me because they don't try to
>suggest anything and they just stare at me and then move on without
>comment. My present gynecologist told me that "it would shock her if
>that pain was a result of endemetriosis and that she would have to see
>that one for herself to believe it" Time for a new doctor I guess.
>Amanda
>
>At Mon, 6 May 2002, Selisa wrote:
>>
>>Amanda,
>>Hehehe....I agree!!! But I am glad too, that they are people out there
>>who not only know, but who truly understand. There are times when I am
>>describing my pain to doctors,that I get the feeling that they don't
>>believe me. Have you ever had that happen? Isn't it frustrating?? Well
>>I will tell ya this Amanda, Teresa and Heather, if I run across anything
>>that looks like it may help, ya'll will be the FIRST to know! In the
>>meantime, I hope ya are able to find some relief. Tomorrow I go back to
>>the doc, hopefully something good will come out of that!
>>
>>Hugs to ya'll,
>>Selisa ; )
>>
>>At Mon, 6 May 2002, Amanda wrote:
>>>
>>>Heather, Selisa, Teresa....it seems like soon we will need a new forum
>>>just for bathroom pain!!! I am not glad that any of us have this problem
>>>but it is nice to know that there are other people who understand. A
>>>frustrating aspect that remains I suppose is that none of our doctors
>>>have any solutions. I suppose if adhesions/scar tissue on our bladders
>>>are the cause of our pain, even hysterectomy would not bring releif. I
>>>have read that 2 self-help measures for endo in general are complete
>>>non-consumption of dairy products and maintenance of a healthy weight.
>>>Please let me know if you have heard of anything else.
>>>Thanks,
>>>Amanda a_farquharson@hotmail.com
>>>
>>>At Mon, 6 May 2002, Heather wrote:
>>>>
>>>>It gives me some comfort to know that you guys are out there. I have
>>>>extreme bladder pain when emptying a full bladder. My urologist also
>>>>said that it is probably due to adhesions from having laparoscopies. He
>>>>said the adhesions form somewhat of a rubberband and when we empty a
>>>>really full bladder, the rubberband like material stretches causing
>>>>pain. Although that sounds great, he had no solution, so I still
>>>>suffer. I have found that not waiting until I have a full bladder to
>>>>use the bathroom helps some...also I have cut out caffeine and I have
>>>>found some relief as well. Let me know what you all hear...I am so
>>>>frustrated at the lack of answers...but we all have each other and
>>>>that's better than nothing :)
>>>>
>>>>Hope you both have a great day!
>>>>-Heather M.
>>>>
>>>>At Fri, 03 May 2002, Teresa wrote:
>>>>>
>>>>>Hey Amanda :o)
>>>>>
>>>>>I thought you might like to know that you are not the only one who has
>>>>>bladder pain all the time - I do too, along with bowel pain.
>>>>>It is annoying as you go to the toilet to 'relieve' yourself, but end up
>>>>>hurting more for a while.
>>>>>
>>>>>Teresa (G) :o)
>>>>>Sending Pain-free vibes.
>>>>>
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