Re: Interstitial Cystitis & Endo Surgery (REPLY TO Mindy)
From: Mindy (anonymous@obgyn.net)
Sat Sep 29 00:41:20 2001
No problem...I took a huge chance going to see Dr. R. I really had no
one to ask other than the board and I only got few responses! My
decision was mainly made mainly on his impressive experience in
eradicating this disease. I am more than glad to help in any way I can.
Here are the answers to your questions:
1) Before your surgery, did you experience severe nausea and burping as
one of your endo symptoms?
Yes, nausea (but I still have that...I think it's part of my PMS!). No,
burping.
>2) Did you ever experience stabbing pains in the rectal region? And what about stabbing pains in other regions of the abdominal cavity--excluding the ovaries, uterus and pelvic region (as we all seem to experience the stabbing pains in the pelvic cavity)? Did you, before surgery, ever experience rib pain and pain in that general vicinity?
Yes, stabbing pains in rectum (bleeding and excrutiating bowel movements
during my period...stabbing pains came anytime during the month, but
were exacerbated by my period), ovaries, and midline pelvic region. I
had endo on the bladder and all over the pelvis. No rib pain.
You will probably have to have a colonoscopy before you see Dr. R...I
mean if you see him!
3) Did Dr R find and excise any endo on your small intestines (also
where the small intestine joins the large intestine), ureters, kidneys,
abdominal cavity, diaphragm, etc. or was the extrapelvic endo confined
to the sigmoid?
The only excision that took place (that I can recall) in regards to the
digestive system was the sigmoid colon. I am looking at my report and I
did have a resection of the ureters. Nothing here about the kidneys or
diaphragm.
4) Were you on cont bc pill before your endo surgery with Dr R? *And,
are you now on cont bc pill/bc pill at all, since your surgery?
I have not been on birth control for 4 years. My husband and I have
been trying to get pregnant for 3 years. At this time I am not on any
hormone therapy.
5) How many days (total) did you have to stay in Bend?
I stayed in Bend for 1 week. I am not sure what the recommended amount
of time is. I felt 1 week was fine. I was uncomfortable traveling, but
it wasn't terrible.
I was lucky because my dad lives 5 minutes from Dr. R's office! I also
have a friend in Bend who just had surgery with Dr. R as well, but her
probs were more of the reconstructive nature...not so much
Endo...although she has a history of Endo.
6) Would it be okay for me to email you personally for additional info
if necessary?
Absolutely: anonymous@obgyn.net
Hope this helps, and again feel free to email me personally any time!
--
Mindy :-)
At Sat, 29 Sep 2001, Yen wrote:
>
>Dear Mindy, Marlene, and All:
>Mindy, Thank you, thank you, thank you lol, for responding re your
>surgery with Dr R and your problems re IC. You have no idea how much I
>appreciate that you have shared your surgical experience re Dr R -- you
>see, I must make a decision re surgery, thus my intense interest.
>Mindy, would you please please answer a few more questions for me re
>your surgery findings/symptoms?
>
>1) Before your surgery, did you experience severe nausea and burping as
>one of your endo symptoms?
>
>2) Did you ever experience stabbing pains in the rectal region? And what
>about stabbing pains in other regions of the abdominal cavity --
>excluding the ovaries, uterus and pelvic region (as we all seem to
>experience the stabbing pains in the pelvic cavity)?
>**Did you, before surgery, ever experience rib pain and pain in that
>general vicinity?
>
>3) Did Dr R find and excise any endo on your **small intestines (also
>where the small intestine joins the large intestine), ureters, kidneys,
>abdominal cavity, diaphragm, etc. or was the extrapelvic endo confined
>to the sigmoid?
>
>4) Were you on cont bc pill before your endo surgery with Dr R? *And,
>are you now on cont bc pill/bc pill at all, since your surgery?
>
>5) How many days (total) did you have to stay in Bend?
>
>6) Would it be okay for me to email you personally for additional info
>if necessary?
>
>Okay LOL, it was more than a few questions which I have just asked lol
>-- please, (not to put any pressure on you lol but you know how it is
>when one is deliberating over surgery), when you get a chance, I'm
>awaiting your answers.
>
>I hope the IC pain is getting better for you. Marlene knows much about
>IC -- she'd be a great person to ask should you need some pointers on
>that issue.
>
>Thanks Mindy:),
>Yen
>
>At Fri, 28 Sep 2001, Mindy wrote:
>>
>>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?
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