Pelvic pain diet (BPS/IC)

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This article is a little behind the times (no mention of myofascial aspects, for instance), but it has a useful description of some of the dietary aspects.

Woman finds relief from pelvic pain

Monday, July 26, 2010
By Shavonne Potts

Kim Robinson has suffered with a hard-to-diagnose disease that can be even harder to pronounce for nearly two decades.

When Robinson, 43, was in her early 20s, she was diagnosed with interstitial cystitis, a disease that is marked by recurring pelvic pain and/or discomfort in the bladder or pelvic region.

Interstitial cystitis, commonly called IC, is often associated with the need to urinate frequently and a strong need to urinate.

It’s also referred to as chronic pelvic pain syndrome, painful bladder syndrome or hypersensitive bladder syndrome. Essentially, a patient with interstitial cystitis has no protective lining to the bladder.

Living with IC

“Imagine using a vegetable peeler and you accidentally scraped your finger instead of the vegetable — that’s pretty much what the inside of a bladder looks and feels like in a person with IC,” said Robinson.

Now if you put alcohol, citrus juice, tomato juice or any other kind of irritant on it, that’s what if feels like when an IC patient eats or drinks something that irritates the bladder lining.”

The disease is not new, but many who suffer from it are often misdiagnosed.

“It’s been around for years. Many women were diagnosed with urinary tract infection. The diagnosis may be considered rare,” Robinson said.

When Robinson of Salisbury, was diagnosed, her doctor told her this was a disease “older ladies have,” she said.

“I went for years thinking I was weird. In the last several years, my symptoms got bad,” she said.

Her days are unpredictable, sometimes she may eat something that causes a “flare up” or wake up with pain.

“Many days, pain is the first thing I feel when I wake up and the last thing I feel before I go to sleep. When it’s there, it’s there and when it’s gone, I’m like everyone else,” she said.

Doctors and nutritionists believe certain foods including caffeine, chocolate, any food with artificial sweeteners like aspartame and especially acidic foods may cause a flare up.

“I cannot eat grapefruit or pineapple because of the high potassium and acid,” Robinson said.

She said there are so many triggers, and a special diet, to Robinson, would be a bland way of eating. The interstitial cystitis diet would include an elimination of salt, condiments, spicy foods and caffeine.

“There are so many triggers. If you have a normal lining in your bladder, nothing would bother you. There’s so many chemicals in our diet, it would take a lot of elimination,” she said.

Treatment

There is no cure for interstitial cystitis, but there are treatment options to relieve symptoms. Some treatments include oral or topical medicines, diet modification and bladder installations or “cocktails.”

The cocktails, a mixture of certain medicines put directly into the bladder, contain a local anesthetic called Lidocaine that numbs the bladder, Robinson said.

“These are rescue treatments that are meant to put you out of pain immediately. It can contain Elmiron, most every IC patient uses it. You can take it orally or insert it. It’s supposed to help rebuild the bladder lining,” she said.

After years of giving herself cocktails and learning how to place her own catheters, Robinson decided to go into the medical field. She is now a nurse with Novant Health.

Although interstitial cystitis is is not a urinary tract infection, even the smallest amount of germ can produce severe pain for patients. A true urinary tract infection requires treatment, but ironically, in a patient with interstitial cystitis frequent antibiotic use only worsens interstitial cystitis in the long run, especially if the disease is not being treated appropriately.

This has been the case for Robinson, who because of her early treatment has had some adverse effects.

It was so new and not much was known about treatments 20 years ago.

Before she was finally diagnosed, doctors discovered polyps on Robinson’s bladder that were removed. Unfortunately, it did not help her interstitial cystitis.

They first thought removing the polyps was helpful, but now they know it disturbs the mucosa, the moist tissue that lines organs, Robinson said.

She was also treated for years with antibiotics, but long-term antibiotic use has been found to worsen the disease.

“Over the years, they’ve changed the way they treat it. All of these things probably made me worse, but that’s all they knew,” she said.

Within the last 10 years, there’s been more research done on the disease. Robinson said many gynecologists are also able to provide relief to patients through biological hormone replacement and other topical therapies.

“There is a balance. You want to be able to enjoy your life,” she said.

Robinson said the use of the cocktails has allowed her to leave a fairly normal life.

“I’ve met people who can’t work or travel. I can function from day-to-day,” she said.

Interstitial Cystitis Association

When Robinson joined the Interstitial Cystitis Association two years ago, she found support and the latest news on research and support for patients with interstitial cystitis.

She recently attended a conference where she met many of the doctors she’d heard of through the years.

“It was awesome to meet physicians who dedicate their practice to pelvic issues for women and men,” she said.

What she learned through the conference was that the disease is multi-faceted and requires multi-disciplinary treatment.

“It is far more complex than just involving the bladder or other structures of the pelvis for women and men,” Robinson said.