ENDO Messages for August, 2001: Re: IC (((Yen))) (long reply)

Re: IC (((Yen))) (long reply)

From: Marlene (anonymous@obgyn.net)
Sun Aug 19 18:35:42 2001

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Hi Yen:

Most definitely forums are wonderful, this one in particular *smiles*. I have learned so much from the women here through their posts of sharing their first hand experiences.

I hope that your urologist has diagnosed you correctly too and not doubting his/her expertise, I just know that in my situation IC was almost the last thing that was thought of as to one of the causes of my pelvic pain. I had multiple conditions causing me pain, Polycystic Ovarian Syndrome, Endo, Adhesions and IC.

I hope I can describe the pain in my back properly. It was central above my tail bone but felt more internal than bone related...if that makes sense. I am not sure what you mean by mid sacral region though or maybe that is the same thing?? Initially it was thought that my abdominal pain was caused by my ovaries because that is where my pain appeared to be, left and right sided. They removed them and 2 weeks after that I had pain continue. My gyne at the time dismissed me and told me my pain would get better in time, yeah like that happened lol....

Before being diagnosed with IC I had read a little about it, but I doubted that I had it...because I didn't have any urgency or frequency, which for most IC sufferers is usually the major symptom or complaint. All I had was internal central burning pain.

Potassium is most definitely an important part of our diet (the heart) as well as Citric Acid is. I supplement both with vitamins. I was told by my Doctor that the vitamins are broken down differently in our body than the foods we consume so taking a vitamin supplement is different than eating foods containing those elements.

My diet is something I must still be careful with. There are other things I have eaten that I have narrowed down as causing me discomfort, in addition to the ones I mentioned before, strawberries and peacans for instance, both cause me pain. In the beginning I kept track of what I had eaten and if my pain worsened (up to 3 days after), I realized I could not tolerate it.

I really hope that you aren't diagnosed with IC, because there is no cure for it, and IC sufferers can have flare ups where their pain is very intense. There are treatment options but none the less it is an auto-immune condition without a cure.

If you would like to email me privately with any more questions, please do. I wish you well in treating/determining your pelvic pain.

Best wishes and regards

--
Marlene
http://www.geocities.com/marsbar3005/endostory.html

At Sat, 18 Aug 2001, Yen wrote:
>
>Hi Marlene and  All,
>Marlene, all of us thank you for adding to the discussion -- thats how
>we learn -- the sharing of thoughts, ideas, experiences, etc.  -- aren't
>forums great :-)! You mentioned that your IC pain did also radiate to
>the back and that your symptoms were not "typical" IC symptoms -- now I
>really wonder whether my urologist dx'd me accurately -- I hope so.
>Would you please share with me a description of your IC symptoms which
>radiated into the back? Was it in the mid-sacral region, tailbone
>region, region behind the ovaries, etc.? Also, did you ever experience
>bladder spasms which radiated to the back and if yes, what did that feel
>like?
>Thanks for the tip re potassium foods -- I wasn't aware that they
>exacerbate IC.  I thought that potassium is a nutritional necessity, if
>so, how do you incorporate the required potassium into your diet? Or is
>your IC no longer an issue -- in other words, is it manageable at this
>point or must you always watch your dietary intake?
>  Would appreciate any and all infor you care to share:-).
>Warmest Regards,
>Yen
>
>At Sat, 18 Aug 2001, Marlene wrote:
>>
>>Hi Yen and Kristy:
>>
>>I just wanted to add to your discussion of IC.
>>
>>After being diagnosed with endo when my ovaries were removed I continued
>>to have chronic pelvic pain.
>>
>>I suffered with this delibitating pain until I was diagnosed with IC,
>>nine months later via cystoscopy.  Like endo being diagnosed via
>>laporoscope IC can only be accurately diagnosed through a cystoscopy.  I
>>did not have the typical symptoms of IC pain.  No burning while voiding
>>or urgency, just constant pain, which at times radiated to my back.  My
>>pain was constant and was low central, and it felt like an internal
>>burning pain.
>>
>>It was not until I was diagnosed and began an elimination diet of no
>>caffiene, tomatoes, potatoes, bannanas, foods containing citrus acid
>>that I began to feel relief.  It was explained to me that potassium
>>makes urine more acidic so that is why it's recommended to eliminate it
>>from your diet (this can be supplemented with vitamins).  I also was
>>prescribed elmiron.  This is a med that rebuilds the bladder lining.
>>
>>I hope you don't mind me adding to your discussion, my only wish is to
>>help.  After suffering debilitating pain for so long that was
>>unexplained and was told to live with it, I empathsize with all women
>>suffering pelvic pain.
>>
>>Pain Free/Comfortable Wishes
>>
>>--
>>Marlene
>>http://www.geocities.com/marsbar3005/endostory.html
>>

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