What is Interstitial Cystitis? Living With IC Symptoms

What is CystitisThis personal story of being diagnosed with interstitial cystitis (IC) includes what cystitis is, how to recognize interstitial cystitis symptoms, and information about one type of treatment for chronic bladder pain.

I interviewed Terri Lynn Grothe (who created the Rambling Mama blog!) about her experience with cystitis (chronic bladder pain). If you’re facing a diagnosis of interstitial cystitis (IC), I hope her story gives you strength and answers questions about living with the symptoms of cystitis! If you have questions about or thoughts on what cystitis is, please comment below. Terri is happy to share her experience living with treatments of symptoms of interstitial cystitis (IC).

Terri’s IC Symptoms & Treatments

Here’s Terri’s story, in her own words:

Hi there friends of New Beginnings! I am so excited to be featured on this blog to talk about what cystitis is and my experience of this disease.

I am a wife to my one and only boyfriend, we met when we were 13 and 14, and the rest is Happily Ever After. We have a beautiful baby girl who is 10, she will always be my baby. I am a proud auntie, and I work a full time job as a Customer Services Representative for a telecommunications company.

My interstitial cystitis symptoms. It was back in 2011 when I first got “sick”- I had no idea what was going on with me. I had many trips to the Emergency room, and every time they told me there was nothing wrong. They told me to go home and relax. I was so tired of them telling me it was all going on in my head. Finally I saw a gynecologist who wanted to do a procedure with my bladder. I would be anesthetized during the procedure. The gynecologist *tried* to stretch my bladder, he said it was full of tiny pin holes that bled when he stretched it. He then diagnosed me with interstitial cystitis.

Note from Laurie: If you have chronic pain in your bladder or anywhere esle, keep going back to the doctor or gynecologist! Find a different one if you feel you’re getting brushed off. You may not know enough to ask, “What is cystitis?” and you may not recognize IC symptoms – but you know when something isn’t right with your body.

What is Cystitis?

Here’s the medical definition: interstitial cystitis is a chronic condition characterized by a combination of uncomfortable bladder pressure, bladder pain and sometimes pain in your pelvis, which can range from mild burning or discomfort to severe pain.

Interstitial cystitis (IC) symptoms include:

  • Pain in the pelvis, or between the vagina and anus in women. In men, an interstitial cystitis symptom is pain between the scrotum and anus
  • Chronic pelvic pain
  • A persistent, urgent need to urinate
  • Frequent urination, often of small amounts, throughout the day and night. People with severe interstitial cystitis symptoms may urinate as often as 60 times a day
  • Pain during sexual intercourse

There is no cure for interstitial cystitis, but it isn’t something that will kill you (such as a terminal disease like cancer). However, the pain is very hard to deal with.

What is Like to Live With Cystitis?

Being diagnosed with interstitial cystitis has changed my life.  I never know when my cystitis will flare up,  never know when it will be triggered by a certain food or drink.  IC symptoms are also triggered by stress. Everyone has stress, but my eating habits had to change. The list of foods I cannot eat is huge. I can’t have any tomato based products, spicy foods, anything acidic, nuts, or processed foods. A lot of fried foods also trigger symptoms of interstitial cystitis. It’s so hard when we go to friends house for dinner, or out to eat at a restaurant.

Note from Laurie: I had to include this toilet cartoon because I have ulcerative colitis, and that’s my biggest concern when it flares!

I get  treatments twice a week for chronic bladder pain. My interstitial cystitis treatments contain several medications that help repair the lining of the bladder. I also get medication through a catheter each Tuesday and Friday. I am hoping they help with the interstitial cystitis symptoms soon! I am on Elmiron for the pain – this is a very expensive medication. Without insurance it costs about $500 per month. I am so thankful for hubby’s great health insurance!

The treatments for interstitial cystitis really affect my mood and personality. I am usually a very happy person, but lately I’ve been having terrible mood swings, a lot of anxiety, and chills and night sweats. I usually sleep with a fan going at night to help me sleep.

Another note from Laurie: Could those newer symptoms of interstitial cystitis be perimenopause, or the start of menopause? Read When Does Menopause Start? Signs of Perimenopause.

Tips for Living With What Cystitis Brings

Never give up. The best advice I can give to anyone dealing with anything life throws at them (not just living with Interstitial Cystitis), is Never Give Up! Never ever give up, keep going, let the love from family and friends get you through each day.

What is Cystitis

Terri Lynn Grothe, Rambling Mama

Write, write, write. Keep a journal and write in it when you feel like life is too much for you.  Every day I am so thankful for my husband, church and family and friends. They keep me moving forward through the treatments and symptoms of interstitial cystitis.

I am open to talking more about what cystitis is, how to cope with IC symptoms, and how to deal with a diagnosis of  interstitial cystitis. Comment below, come over and meet me on my blog, Rambling Momma, or find me on Twitter  @terrilynngrothe.

Last note from Laurie: If you have painful or irregular periods, read 8 Natural Ways to Regulate Your Period

Resources for Interstitial Cystitis

And – if you have chronic bladder pain or think you may have IC symptoms, talk to your doctor as soon as possible. Don’t let it go unchecked and unmonitored! It’s good to learn what cystitis is from the internet, but it’s more important to get a physical gynecological exam in person.

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