Interstitial Cystitis – How Val Survives Chronic Bladder Inflammation : The Passion Seeker

The symptoms of Interstitial Cystitis are painful, but finding the right treatment helps immensely. Here’s how Val copes with this chronic bladder inflammation, plus her tips for women living with Interstitial Cystitis.

“More than 3 million American women have Interstitial Cystitis but it is sort of an under the radar disease,” says this writer and women’s chronic pain advocate. “I didn’t even know what kind of doctor to go to or what questions to ask. It was only after joining online forums about chronic bladder inflammation that I learned about Vulvodynia and Interstitial Cystitis. If there was more awareness about these illnesses, I could have been saved a lot of heartache and trauma. I was laughed out of two emergency rooms when I was truly sick and in pain. Knowledge is power and now I have that power. You need information about your illness a firm diagnosis is made. Since there are only treatments and no cure for Interstitial Cystitis, you need to know what treatments are available.”

If you’ve been diagnosed with Interstitial Cystitis – or if your treatments aren’t working – read The Better Bladder Book: A Holistic Approach to Healing Interstitial Cystitis and Chronic Pelvic Pain. This isn’t a book Val recommends – it’s my own suggestion. The more you know about your bladder, the better!

Here’s how this writer copes with chronic bladder inflammation…

Surviving the Symptoms of Interstitial Cystitis

I woke up with sharp, burning, crippling pelvic pain in December 2008. No one could tell me what it was at first. I went from doctor to doctor, being tested for urinary tract infections, STDs, cysts and bacterial infections. Everything came back negative.

No one could help me and even my own gynecologist dismissed me as a hypochondriac. I was suffering daily, barely able to function until I finally got diagnosed with Vulvodynia in May 2009.

A couple of months later I was diagnosed with Interstitial Cystitis by a different doctor. He believes I had Interstitial Cystitis as well all along. Interstitial Cystitis or IC is a chronic inflammation of the bladder lining.

The Symptoms of Interstitial Cystitis

Interstitial Cystitis feels worse than a urinary tract infection (UTI), but there is no infection. The cause of Interstitial Cystitis is unknown and there is no cure, only treatments. Interstitial Cystitis causes symptoms such as frequent urination, pelvic pain, bladder pressure and abdominal pain.

Vulvodynia is a chronic inflammation of the vagina, when no infection is present. I also have Vulvar Vestibulitus and Pelvic Floor Dysfunction, which are considered sister diseases of the main two illnesses IC and Vulvodynia.

Keeping Interstitial Cystitis in Remission

I’m not in remission, but I am also not in a constant flare like I was when I was undiagnosed in the beginning. My life and my health varies from day to day. I always urinate more than the average person.

Painwise, I have level 2 pain on some days and feel ALMOST normal. Other days, I have level 10 pain and am lucky to make it to the living room couch.

Tips for Women Coping With Interstitial Cystitis

I tell women with Interstitial Cystitis or any related pelvic or bladder illness to never give up! It can be  really challenging to get the right care. Some doctors will put their patients on Elmiron (a bladder repair medication that doesn’t even work for all IC patients) and send them away.

When a treatment isn’t working for a woman, it is important that she speaks up. There are about 15 treatments I can think of just off the top of my head. If a doctor isn’t willing to allow a woman to try out different treatments for Interstitial Cystitis until she finds what works for her, then it is not the right doctor. I have good doctors now, but I have fired several along the way.

Advice for Friends and Family

BE PATIENT. Please, please be patient. Although Interstitial Cystitis is an invisible illness, it is really really painful to live with. When a person is in a ton of pain, she can be snippy or tired or cranky. If your loved one is flared with Interstitial Cystitis or some other chronic illness, just show her compassion. Maybe offer to get her a heating pad or a blanket.

Most importantly, never tell a family member just to “suck it up” or that the disease is “all in her head” – that is the worst!!

Fighting Interstitial Cystitis – or Living in Harmony With It?

Overall, I have to live in harmony with my Interstitial Cystitis and related illnesses since there is no cure. It’s not going away anytime soon, I find ways to live with it.

It’s not easy to live with Interstitial Cystitis. I have had to make changes to my life and find a new normal, but I am by no means miserable all the time. Once I accepted the illness I was able to find happy moments again. Being on the right treatments and modifying my lifestyle allows me to still contribute to society and to be a good family member and friend.

I also know when to take it easy. If my pain is just flaring too much on a particular day, I stay home and miss out on stuff. It does suck at times, but it is better than being in pain all the time. Although I live in harmony with Interstitial Cystitis, I am still a fighter when it comes to awareness. Awareness leads to easier diagnoses for others, better medications, public acceptance and maybe someday a cure.

The Surprising Thing About This Chronic Bladder Inflammation

Interstitial Cystitis  is so painful and common! It’s estimated that around 3 million American women have it. That’s a lot! I could almost understand Interstitial Cystitis being an “under the radar” disease if 250 people had it, but millions…c’mon.

I think Interstitial Cystitis is a little taboo because it impacts the vagina and bladder. But let’s get real, society is filled with sex. If people can talk about sex in the open and in the media, we should be able to talk about urological and gynecological illnesses too.

I think it is also difficult for non sufferers to understand how painful it is in the areas Interstitial Cystitis impacts: the bladder, the urethra, the perineum, all different parts of the vagina…there is a lot of nerve tissue in these areas that people don’t really think about. Pain and inflammation in this area can be unspeakable. Many women with Interstitial Cystitis seek the help of a pain management doctor. When you have pain in these areas, simple tasks such as sitting in a chair or walking can hurt.

Val’s Pelvic and Bladder Pain Blog for Women

I started my blog Pretty With Pelvic Pain about a year and a half ago, because I wanted other women to know they are not alone when it comes to bladder and pelvic pain. So many women hide it because they are afraid to talk about it or are unsure what is causing their pain. They shouldn’t have to hide Interstitial Cystitis – and the sooner they get treatment the better.

I hope my blog makes other women feel accepted. It was sort of a hard decision to start it at first. No one wants to be known as the girl who pees a lot or the girl whose vagina hurts sometimes, but I am so much more than that and so are all the other women with chronic bladder inflammation-type illnesses.

I have come so far. I am not embarrassed by my blog at all, I am proud of it. I always thought that if I even helped one person feel better than I did on the day I woke up in pain, then it would all be worth it. I have already done that and more. I receive emails, Facebook messages and even cards in the mail from women thanking me for my bravery. It means so much to me to be able to help.

Some of my blog posts are sad, some are more medically technical, some discuss self-acceptance, some are happy and some are as simple as recommending comfy pants or a new over the counter medication to other sufferers.  My blog has a life of its own now, so I should really get it an official domain name. It is on my to do list. I never thought it would be such a big part of me when it first started but I am glad it is.

Are you living with Interstitial Cystitis, or another type of chronic bladder inflammation? Comments welcome below…

If you’re living in harmony with or fighting illness, I’d love to share your story. Go to How Do You Live With Chronic Disease? Stories From Survivors.

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