ENDO Messages for February, 2006: Re: Anyone found that your pelvic pain was from Interstitial Cystisis--To Jamie

Re: Anyone found that your pelvic pain was from Interstitial Cystisis--To Jamie

From: Jennifer (anonymous@obgyn.net)
Tue Feb 28 17:13:33 2006

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In reply to: Jamie: "Re: Anyone found that your pelvic pain was from Interstitial Cystisis--To Jamie"

IC can flare with endo. There can be modest improvement w/very careful watching of what you eat/drink.... mine had flares and has fortunately been quiet for a while. Good luck, look to the forums & other women. Drs often mean well but few truly have the joy of first hand experience. Jennifer At Tue, 28 Feb 2006, Jamie wrote: >
>Hi,
>I usually have IC pain daily some days it much worse than other days.
>Some days I can barely walk around. As for the peroid, I only have one
>every 3 months. I just had one and I think that I had bladder pain. Who
>knows, it may be a hormonal thing. I do know that it is very hard to
>distinguish between IC and endo pain. I am getting a little better!
>Jamie
>
>At Fri, 24 Feb 2006, m wrote:
>>
>>Jamie
>>Thanks for your response. Can I ask you is your IC pain a daily thing
>>(and is it really bad during your period?) or is it just during
>>flareups? I ask this because my pain is every day but gets worse the
>>closer I get to my period. then during my period I have viscious
>>cramps. it's so hard for me to believe that my pain is blader related
>>sine Ive had horrible periods my whoellife, I had endo, and my last
>>surgeon suspected adenomyosis because a lot of pain seemed to come from
>>my uterus. Have you had pain since begining menstruating or did the IC
>>pain come later?
>>Thanks so much for your help!
>>At Fri, 24 Feb 2006, Jamie wrote:
>>>
>>>Hi,
>>>I had a cystoscopy last October right after my lap. With the cystoscopy
>>>they are able to look inside the bladder and take a biopsy. I was
>>>diagnosed with IC.
>>>For years, I thought my pain was due to my endo. But everytime I would
>>>have a lap the doctor would find very little endo.
>>>When I have an episode, my bladder becomes very inflamed and presses on
>>>nerves making my back and side hurt. It's very weird. But I have been
>>>able to find out what I can and cannot eat. I must say that it's not
>>>very fun having IC, but at least it's not deadly!
>>>I think that you should have a cycstoscopy done to at least rule out IC.
>>>It is hard to figure out if the pain is from IC or endo or something
>>>else. Just make sure that you are asleep during the procedure.
>>>I have been watching what I eat, take vicodin sometimes, and take
>>>Elavil. There are other things that you can do to help with the pain.
>>>You can go the IC website to help. http://www.ic-network.com
>>>Good luck!
>>>Jamie
>>>At Thu, 23 Feb 2006, m wrote:
>>>>
>>>>Hey,
>>>>
>>>>I have had pain with periods since my periods started. Now, about 15
>>>>years later, I'm at the point of severe pain every day. I take usually
>>>>oxycodone daily. I have had 2 laps, the last one about 5 mos. ago--4
>>>>areas were foun with endo and the edno was removed. Still, i have pain,
>>>>even a bit owrse than before.
>>>>
>>>>I started thinking of getting my uterus out because my dr thought I
>>>>mighthave adenomyosis, since they were pretty sure all the endo was
>>>>taken otu but I got no relief. Well now my dr. wants to rule out IC.
>>>>The urologist wants me try all kinds of medicine and a
>>>>cystoscope--though he admits thre isno real tets that is truly
>>>>definitive for IC.
>>>>
>>>>--
>>>>My quesiton is: If Ive had period pain my whole life, and have had endo,
>>>>and my pain FEELS liek it's comign form my uterus and other pelvic areas
>>>>and not from my bladder (even though I know the bladder is in the pelvis
>>>>too and I do have the sympoms of having to pee then onlt being able to
>>>>get out a few drops sometimes) and my pain is cyclic based on my period
>>>>(liek gets worse before and durign period, then betetr for a few days
>>>>after my peirod) doesnt it make sense that I have a obgun issue that is
>>>>causing the pain and not a urology issue.
>>>>
>>>>Ive had soem small bladder issues (whT I mentioed above) off and on for
>>>>about 6 years (also I had a good bit of endo on my bladder and it was
>>>>removed) but Ive had pms, and menstrual pain, etc for at least 15 years.
>>>>Im so sure there is eithe rmore endo, adhesions, or soemthign going on
>>>>with my uterus or ovaries, and not my bladder that is causign the pain.
>>>>i read a bunch of IC stories and none fit my profile at all. But the
>>>>drs still act like that migth be why ive had this pain even though it
>>>>feels just like my peirod pain.
>>>>
>>>>Has anyone gotten treated for iC and then found that the pelvic an they
>>>>thought was from endo or another obgyn disease was cured from the IC
>>>>treatment? I think this is just another wild goose chnase just liek
>>>>before my 2nd lap showed lots of endo (and I htink thats because I had a
>>>>specialist do it that time--the first time they couldnt find any)but
>>>>drs. kept tryignt o tel me I did nothave endo even though I had all the
>>>>symptoms!
>>>>
>>>>Thanks for your help anyone who can share their experience with me.
>>>>

--
Jennifer

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In reply to: Jamie: "Re: Anyone found that your pelvic pain was from Interstitial Cystisis--To Jamie"

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