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fybromyosis anyone?? fybromyosis anyone??

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  #1  
Unread 09-20-2004, 12:47 PM
fybromyosis anyone??

hi,
sorry i cannot spell i went to my post-op friday and she said everything went well she removed everything and she also said i have fibromyosis? i asked her and she tried to explain it.. i guess it's like a layer or scar tissue...my question is could that be why i'm in pain again so fast after surgery what the heck is it? she didn't explain it much so i'm very confused... has anyone heard of it???? thanks
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  #2  
Unread 09-21-2004, 08:07 PM
fybromyosis anyone??

Oh ((((sweetie)))) I do hope that you find answers soon Did your doctor mention how to treat this condition? If it's what's causing the recurrance of pain, I would hope that there's a way to control... or avoid the recurrance?

Sending tons of s your way and hoping that someone drops by soon with some insight to share.
  #3  
Unread 09-22-2004, 04:17 PM
fybromyosis anyone??

Hi...I am so sorry to hear your still experiencing pain I have a condition known as Fibromyalgia that causes me body wide pain & aching, extreme fatigue and several other symptoms that most result in pain My condition has a few other names also; one being fibromyositis and i'm wondering if it is the same
Here is a link to our Resources that contains several excellent sources of info:

https://www.hystersisters.com/vb2/lin...=browse&cid=31

Does it sound familiar?

((((hugs))))
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  #4  
Unread 09-23-2004, 12:35 AM
fybromyosis anyone??

Hi coffeelover

Fibromyosis is another word for interstitial endometriosis. Some other synonyms are endolymphatic stromomyosis, parathelioma, stromal endometriosis, stromal myosis and stromatosis. It refers to the presence of endometrial tissue in the form of the stroma thoughout the myometrium. That means that you had endo in the connective tissue surrounding your pelvic organs.... that could explain the pain

Here are a couple of links with more information:

http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=7116313

http://www.pdrhealth.com/content/wom...s/fgwh08.shtml

The first link suggests that perhaps depo provera can be helpful in some cases of fibromyosis... has your DR talked about trying it to see if it helps you? That might be something to ask about at your next appointment.

I hope this helps!
s,
-Linda
  #5  
Unread 09-23-2004, 11:17 PM
So confused !!

hi,
i'm confused... is it a form of cancer? or can it turn into cancer? she didn't say anything about cancer... i just thought it was a form of scar tissue,but now that i read your post she did mention intersistial endometreosis ..should i be looking for another dr? she didn't even go into any kind of detail with me just that everything looked fine. and when they found the fybromyosis the left it.. shouldn't they have removed it? or would that make it spred? i'm so in the dark.. thanks for the post you were so helpful ...
  #6  
Unread 09-23-2004, 11:36 PM
fybromyosis anyone??

Here's what I'd do... I'd get copies of my surgery and pathology reports (I usually get them from my DR for free, but you can also get them from the hospital where the surgery was performed; they may charge a per page copying fee though). I'd also get in to see the DR and ask her to explain exactly what this diagnosis means to you in terms of any possible future problems it might cause you and any treatment that could possibly minimize any potential problems. Then I would get a second opinion from a different, unaffiliated DR.

Endometriosis itself isn't cancer, but stromal myosis is a bit of an odd situation. My understanding is that it isn't cancer but it grows like a cancer, but please don't quote me on that - I'm not an MD. You'd be best off consulting an endometriosis specialist to get a more precise understanding of what you're dealing with and any potential treatment options.

In general, the only "cure" for endometriosis is its complete removal. However, I believe in the case of fibromyosis that's not possible, so they are using hormonal treatments to control it. That might be something you could consider trying.

Let us know what you find out, OK? I'll be keeping my fingers crossed for you.
s,
-Linda
  #7  
Unread 09-24-2004, 06:54 AM
SO HELPFUL..

HI,
THANKS YOU FOR ALL OF YOUR ADVICE.. I AM GOING TO GIVE HER A CALL.. BECASUE SHE NEVER EXPLAINED ANYTHING.. YA KNOW I FEEL SO BAD BECAUSE THIS IS THE 3RD DR. THAT I HAVE HAD SINCE I FOUND OUT I HAD ENDO.. 8 YEARS AGO..DO YOU NEED A REFERRAL FOR A SPECIALIST? I THINK A ENDO SPECIALIST IS WHAT I NEED... YA KNOW I HAVE NEVER HEARD OF THIS UNTIL NOW.. AND IF I DIDN'T COME TO THIS BOARD I STILL WOULD BE IN THE DARK...
THANK YOU SO MUCH !!
  #8  
Unread 09-24-2004, 06:05 PM
fybromyosis anyone??

I'm glad to hear your getting some answers ((Coffee Lover)) An Endo Specialists sounds like an excellent idea, IMO
As for the referral, it usually depends on your Insurance provider...like mine I dont need a referral to see on but a girlfriend of mine has to go see her Primary Care Dr & he then gives the referral...
There are some Drs, exp specialist that require a referral to get an appt. I assume to make sure that the condition requires one

Good Luck! Pls keep us posted on how things are going for you...(((hugs)))
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