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Intimacy Beyond IC

From the spring 2017 issue of the ICA Update.

Rethinking what closeness means when facing chronic pain.

Whether in a longstanding relationship or dating, intimacy is one of the biggest challenges faced by IC patients. Along with chronic pain, there’s the highly specific nature of IC symptoms that makes intimacy painful for many, and nearly impossible for some.

“Sex is obviously a very important part of a relationship in many ways, and for me to be out of commission for sometimes weeks at a time was very straining,” one IC patient says.

Some IC patients who responded to the ICA Update survey say they’ve ended or deliberately avoid intimate relationships for this reason. Others offer frank descriptions of the challenge.

“I sometimes have a love/dread relationship towards sex,” one says. “My pain peaks a day after sex and it feels frustrating and hopeless. Sometimes, my limitations due to pain frustrate him and he feels helpless, leading to him getting short with me. I, also, get short with him due to pain.”

Intimacy can be challenged in many ways. Many survey participants sleep in separate rooms because of the number of times they have to get up at night to urinate. “You have to have a strong enough relationship that can endure periods of time with no sex life,” one adds.

A key is communication. As one patient put it, “if it hurts, make it clear, and reassure them it’s not because of them.”

Counseling and physical therapy can help couples minimize sexual pain and redefine intimacy to include activities other than penetrative sex. If periodic flares are the problem, discuss when conditions are best for intercourse. “We have our time, but it doesn’t have to be all the time,” one patient says.

From those with conditions severe enough to make sex impossible at all times, think about intimacy in new ways. “There are many different ways to express your love,” one IC patient says. “Take time to spend alone together. Take care of your spouse in little ways. Mine loves getting his head gently scratched and finds it relaxing at the end of the day. That’s something simple I can do even on the couch.”

“There are times when each of you will feel hurt, left out, unloved,” one IC patient says. “There are other ways to show you love each other, and you must find out what they are. Fill your love buckets in other ways, because sex will not be a big one.”

“IC has divided us physically, yet also brought us closer emotionally,” another patient adds.

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