ENDO Messages for September, 2001: Re: Interstitial Cystitis (REPLY TO YEN)

Re: Interstitial Cystitis (REPLY TO YEN)

From: Mindy (anonymous@obgyn.net)
Fri Sep 28 10:37:56 2001

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Reply: Yen: "Re: Interstitial Cystitis & Endo Surgery (REPLY TO Mindy)"

Hi Yen!

Dr. R did a wonderful job on me and it was worth every penny. I had surgery with him May 2001. I was relieved of Endo pain immediately following surgery. In fact, my first period after surgery was pelvic pain free (not cramp free!). He found Endo almost everywhere in the pelvis (he removed approximately 30 samples). He removed Endo from all sides of the bladders and did a partial resection of the sigmoid colon where he also found Endo. My ovaries were attached to the pelvic walls by filmy curtains of adhesions. My first surgery back in Feb 2000 my Dr. then found two very large chocolate cysts on my ovaries. No Endo was found on my ovaries with Dr. R. I am so grateful to Dr. R that he has dedicated his work to this disease.

Approximately 1.5 months after surgery I began to have pelvic pain again. It was midline and got worse around midcycle and menstruation. It was not as deep and stabbing like the Endo, but more of an ache, throbbing, and very irritating pain. I would notice that during the night when I had to urinate, I could barely walk to the bathroom and it was very painful to void. I also noticed that I was not able to hold my urine at all because of pain. I went back to Dr. C (Mission Viejo) and told him that I was still experiencing pain. He did an exam and the pain was coming from the uterus and bladder. We ruled out Endo because we felt confident in Dr. R’s ability to eradicate the disease. He ordered an MRI to rule out Adeno (which was negative) and he sent me to Dr. K (Scripps Clinic) to be tested for IC. Bingo…..IC.

I have modified my diet and I am taking the Elmiron (400 mg.). Dr. K gave me Ditropan to help with urgency and frequency, but since I have modified my diet, I stopped taking it (even though I am still going about 15-20 times in a 24 hour period!). I am not big on meds! I was also prescribed Elavil (sp?) for pain. I didn’t take it at first, but I am now trying it to see if it helps at midcycle and during my period.

I guess the difference between Endo pain and IC pain is this:  Endo pain was very intense, deep, sharp, stabbing and it would put me in bed for 2-3 days.  IC pain is more of a deep, dull, ache, throbbing and can at times get very intense. It can be very sharp at times, but usually only when I wake up in the middle of the night having to urinate really bad. There have been a few times where the IC pain was almost as bad as the Endo pain.  Endo was more consistent…always right before and during menstruation. IC is very inconsistent…that is why it was hard for me to pin point and describe the pain accurately to Dr. C.

In addition to all of this, Dr. C prescribed physical therapy for the pelvic area and for the IC, and it has helped immensely! My cramps are getting better and my scar areas are not as tender. The therapist also said that therapy will help with internal adhesions and scaring. So far it has been a huge help.

Hope this helps! And I apologize for taking so long to respond!!!

Mindy :-)

At Wed, 19 Sep 2001, Yen wrote: >
>Dear Mindy,
>Actually, I do think I recall reading something about hormonal changes
>and IC -- if I recall correctly (don't quote me on it), I believe IC was
>said to flare when women experienced a decrease in estrogen levels. I
>don't recall where I read this, but do recall reading it at more than
>one website -- I had (late one night) done an IC search on Yahoo and
>came across a number of websites. Perhaps if you did a Yahoo search
>+IC+estrogen , then perhaps you would find such articles.
>Re the IC flare occurring after surgery -- I don't know but I recall
>another endo sis experiencing an IC flare following her surgery -- she
>had endo removed from her bladder at that surgery. I wonder whether
>having the bladder endo removed triggers a flare since the bladder is
>irritated from the surgery???
>
>Re your surgery with Dr. R, is all of your endo pain gone? From where
>did he find and remove endo? Did you have endo on your colon, ureter,
>kidney, diaphragm, etc. or was it all in your pelvic cavity? Did both
>of your ovaries have endo involvement?
>
>Can you describe to us the difference between your endo pain and your IC
>pain?
>
>Sorry for so many questions Mindy, but I am particularly interested :o).
>
>Re the IC again lol, I found the IC websites to be quite helpful re
>lists of "trigger food/beverages/etc.".
>
>I look forward to reading your answers.
>
>Thanks Mindy :),
>Yen
>
>At Wed, 19 Sep 2001, Mindy M wrote:
>>
>>Hello! I have not posted to the board in so long. Some of you knew that
>>after my surgery with Dr. R I was still having pain....turns out to be
>>IC....amazingly enough many women, including women on this board, have
>>it as well. Who knew a lot of the pain I was having was coming from the
>>IC. There were days I could not walk and I had so much pain before my
>>surgery I couldn't tell what or where it was coming from after
>>surgery!!! However, my pain level decreased significantly after my
>>surgery...Thanks to
>>Dr. R!!! I can now tell the difference from my endo pain and ic pain!
>>
>>My question to you is, has anyone come accross information regarding IC
>>and hormonal changes? I do have mild bladder pain during my period and
>>during mid cycle and my current Dr. says IC can be aggravated by
>>hormonal changes. I challenge this....how can the bladder be aggravated
>>by hormones!!!!
>>
>>Thanks,
>>Mindy :-)
>>
>>PS: I have checked ichelp.com and couldn't find anything regarding
>>hormones and ic....did I miss it?

Next message: AJ: "Kristy"
Previous message: anonymous@obgyn.net: "Re: IBS and Endo??"
In reply to: Yen: "Re: Interstitial Cystitis"
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