Interstitial Cystitis (IC), Pelvic Pain Support Forum User Group
What causes IC - Is it hereditary & what are the symptoms?
About This Group:

This support forum is for those who suffer from Interstitial Cystitis and Chronic Pelvic Pain and for those who support them. IC is a very individual and often difficult to treat painful illness. IC often has many other conditions that exist along with it adding to the Pelvic Pain. This forum is to provide support, encouragement, and education so that together we can find treatments and hopefully someday a cure!

Founded by MSKshelly on September 22, 2009
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What causes IC - Is it hereditary & what are the symptoms?

Hi,

I'm new to the group.  What causes IC and is it hereditary?  What are the symptoms?

Thanks,

C~
2 Comments
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The cause of IC is not known and highly debate.  Doctor's and researches have spent a lot of time and money looking for answers.  Some believe it is from a low level bacteria maybe even  biofilm infection that is in the bladder wall or has damaged the bladder lining.  Others, because our UA and cultures rarely show infection, swear there is no bacterial connection.  Some suggest exposure to chemicals, preservatives and additives can damage the bladder lining.  A very exciting find in research is the APF that is low or missing in most IC patients.  This could be a crucial key and is part of  the research currently going on.  There are studies going on to see if there is any link to heredity.

I personally believe that the series of insults to the bladder wall that cause IC can be different for each patients.  I believe this is what makes treatment so individual and hard for both doctor and patients.  IC can also occur and usually does along side other
pelvic conditions, like Pelvic Floor Dysfunction, Fibromyalgia, IBS and others.  We do know that most IC patients have an increase in Mast Cells and histamine, which is why many doctor's start their patients out on  an antihistamine to help treat it.  This is also a found in many autoimmune diseases.

The symptoms of  IC can vary greatly between patients and even the same patient throughout the day.  The symptoms of IC feel a lot like having a bladder infection.
You can have pain from mild pressure to burning,  severe bladder spasms, urethral pain, frequency especially at night and pain during the physical relationship.  This pain with intercourse can be during or can even start 24 hours later.

IC can be a very difficult illness to live with especially in the early stages since the pain levels can be extreme.  It is very important for IC patients to have a support network to communicate especially during a flare since!  That is what this site is about sharing ideas, research, information and compassion.  IC patients often struggle with negative thoughts because of the pain and the quality of life when they are living in a flare.  Having an arsenal of coping tools to help you through is the key to pulling up out of a flare and getting symptoms under control as soon as possible.  This makes living with IC less difficult but finding those tools takes time and requires a lot of support!

Welcome to Medhelp IC and Pelvic Pain Support!

Shelly
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Thank's Shelly!

I have a friend with this condition and want to be able to understand her pain better.

C~
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