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View Full Version : Newly diagnosed, also suffering from endo and fibro


KLathin
06-21-2006, 10:22 AM
Hi,

I am new here and new to IC. I was recently diagnosed during a lap for endometriosis through a cystoscopy. A little background on me: I am 23, I have had endo since I was 11 and just had excision surgery at the CEC in Atlanta. (I also have had almost every other treatment for endo, so feel free to ask Qs about endo/treatment/etc, I would love to help if I can!) I also have fibro, which was mild when I was younger but after going on Lupron, for endo, when I was 17 it really hit me hard.

I currently am on a fairly restricted diet (I have *no* idea if it's an IC diet) and seem to do well on it. I am vegan (no animals or animal products of any type, again, if anyone has Qs since vegan is suppose to be good for endo and fibro, please ask, I would love to help!) for moral reasons and wheat and gluten free due to allergies and intolerances.

I didn't get a ton of info from the urologist who did the cystoscopy, as that was just an extra procedure they threw in there since I had some bladder issues. But I do have pictures! (And not a clue what they mean :) )

My symptoms are hard to define, as I am not sure what is causing what. Fibro is suppose to cause some bladder issues, as is endo. But, here is what I think is attributable to IC. When I don't drink enough water I have to constantly use the bathroom, it lessens when I drink enough water, but I still need to go frequently. It also has become harder to urinate, esp before and after my period. I also have extremely sensitive skin in my vaginal area. Also, since my last surgery, if I let my bladder get full, I start to get terrible shooting pain down the front of my pelvic area.

I live near Ann Arbor, MI and am hoping to find a wonderful doctor (aren't we all?) somewhere near me. I have been through so many horrible doctors and "treatments" for my other medical conditions, so I am very afraid to go through that again. Especially as I was told that my IC is very mild and in the starting stages, so if I can find a good doctor I have a good chance of beating this. This is really, really important to me, as all my other conditions are chronic, and even though the endo should be better after my last surgery, I still need to cope with the fact that it can come back. So if anyone can help me to find a good doctor, please feel free to respond here or email me privately at klathin@emich.edu.

Thank you so much for reading this and being here for support!

Karin

zfairy
06-23-2006, 09:04 AM
Hi,

I am new here and new to IC. I was recently diagnosed during a lap for endometriosis through a cystoscopy. A little background on me: I am 23, I have had endo since I was 11 and just had excision surgery at the CEC in Atlanta. (I also have had almost every other treatment for endo, so feel free to ask Qs about endo/treatment/etc, I would love to help if I can!) I also have fibro, which was mild when I was younger but after going on Lupron, for endo, when I was 17 it really hit me hard.

I currently am on a fairly restricted diet (I have *no* idea if it's an IC diet) and seem to do well on it. I am vegan (no animals or animal products of any type, again, if anyone has Qs since vegan is suppose to be good for endo and fibro, please ask, I would love to help!) for moral reasons and wheat and gluten free due to allergies and intolerances.

I didn't get a ton of info from the urologist who did the cystoscopy, as that was just an extra procedure they threw in there since I had some bladder issues. But I do have pictures! (And not a clue what they mean :) )

My symptoms are hard to define, as I am not sure what is causing what. Fibro is suppose to cause some bladder issues, as is endo. But, here is what I think is attributable to IC. When I don't drink enough water I have to constantly use the bathroom, it lessens when I drink enough water, but I still need to go frequently. It also has become harder to urinate, esp before and after my period. I also have extremely sensitive skin in my vaginal area. Also, since my last surgery, if I let my bladder get full, I start to get terrible shooting pain down the front of my pelvic area.

I live near Ann Arbor, MI and am hoping to find a wonderful doctor (aren't we all?) somewhere near me. I have been through so many horrible doctors and "treatments" for my other medical conditions, so I am very afraid to go through that again. Especially as I was told that my IC is very mild and in the starting stages, so if I can find a good doctor I have a good chance of beating this. This is really, really important to me, as all my other conditions are chronic, and even though the endo should be better after my last surgery, I still need to cope with the fact that it can come back. So if anyone can help me to find a good doctor, please feel free to respond here or email me privately at klathin@emich.edu.

Thank you so much for reading this and being here for support!

Karin










Hi there, my name is kara. I too suffer from I. C since Feburary of this year, only after my cyscopy they found it. As well i have Endo and Fiber, yes symptoms worse after age and different surgries. But i have a floating bladder since then as well, been on bed rest since.
What other foods do you eat? Do you know the I.C friendly foods? my email is Zfairy here on ICN FORUM. FEEL FREE TO EMAIL ME.

Trishann
06-23-2006, 09:28 AM
Hi, it is really good that your IC is mild. You have a better chance that medicine will help it. The pain you are describing can be from IC but I do not know because of the other health issue you have now. Definitely let the doctor help you with the IC because it sounds like you don't need to deal with more pain. Sorry I don't know the doctors down there, I live in Illinois, but I know there are people here on this net can help you. Hope you the best.

KLathin
06-23-2006, 11:22 AM
Hi,

Thanks for the replies :)

Kara, I have found a list of the IC friendly foods, but unfortunately one of my main staples (soy) is on the no-no list. I may try to do something about it, but for now I just cant switch my life around even more. I already have had to cut out so many things b/c of my fibro. Eventually I am sure I will try it, but right now I think it would be just too stressful. Especially b/c I am trying to do a yeast/sugar free diet.

Trishann, where in Illinois are you located? (If you don't mind my asking!) I am going to be in Chicago later this summer and will probably go back a couple of times. So, if you were to have the magical urologist in Chicago who will be able to cure me in a couple of visits (lol!), I would love to see him/her.

Again, thanks :)

Karin

Trishann
06-23-2006, 12:44 PM
Even though I live in Illinois, my urogolist is located in Missouri. We live near the boarder line, so it is not a great distance for me. Chicago is a long drive from where we live. Sorry, I don't know the doctors in Chicago. Hope you can find one that can help you.