My Life with Interstitial Cystitis

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bladder pain interstitial cystitis
This silent disease can not only take over someone’s body, but can also crumble their world. Interstitial cystitis (IC) is mainly a women’s disease, but there are some men who do get this as well. I am one of them, and this is my story.

Let me tell you who I am.  I am a military vet of 8 years in service, and I have also served my home county, the Winston County, Alabama Sheriff’s office, and the property appraisal office.  I played many sports in high school and went to 2 years of college.  So I have always been busy and active.  When I was in the Army I was diagnosed with depression, bipolar disorder, anxiety, personality disorder, and also PTSD. I had already had too many issues to work on before even getting IC.

I was diagnosed with interstitial cystitis in November of 2015. At that time, I had no idea what I was in for. When I first started getting bladder pain, the doctors thought I was getting urinary tract infections, so I was given several rounds of antibiotics. Those did not work and I continued to have pain. I finally had a cystoscopy, and four tumors were found in addition to the interstitial cystitis.  I had surgery for the tumors, which ended up being non-cancerous. After the surgery I was just given Tamsulosin (Flo-max) and Tramadol for pain and sent on my way. I also started the IC diet.

At a follow up three months later, when I told the doctors that I was still in pain and still going to the bathroom all the time, they said that was normal for IC , and told me to stick to the diet. It seems like some doctors don’t have a lot of knowledge about this disease. Since then I still hurt and I have even gotten worse. Cutting grass used to be my favorite thing to do, while listening to music and unwinding. Now I can’t even do that.  Even walking is a chore–it starts off as a small pain, and then it escalates into a pain that just shuts me down.  Barbecuing is another former pleasure that has vanished from my life. For one thing, BBQ sauce is a big no-no on the IC diet.  But also standing up for a long period of time causes a sharp pain and a burning sensation that feels like my whole gut is on fire.

My love life is now also gone because the pain of arousal and actual intercourse is so painful it makes my eyes tear up.  I have three boys ages 2, 3 and 10 years old, who love to wrestle and run. Now I can’t play with them—I can only watch from the sidelines. I get very little to no sleep because of the pain and the frequency of getting up all night to go to the bathroom. This disease has zapped me of all my dignity. My self-respect and self-esteem have suffered greatly. Not only is there a huge physical toll, but it has a major toll on you mentally as well.

This disease can affect anyone—it doesn’t matter what gender or race you are, or how young or old you are. It has a huge impact on a person’s world, and on their family and friends. For example, when we travel I always have to know where all the bathroom stops are en route, and we sometimes have to cancel family get-togethers. When I informed my family about what I had, they didn’t know what it was, and they didn’t understand it. They responded with comments like “oh, just walk it off,” or “you will be okay, just keep working at it.” It’s hard to face your family and friends, and pretend that you are okay, when you are not. I was in despair beyond belief, but then I found a support group on Facebook to help me along, and I am very thankful for that.

The only way we can beat this is to accept our situation, support one another, and pick each other up. We also need to communicate how we feel (especially men, who are more prone to hold everything inside) and help others understand what we are going through. All we can do is put one foot in front of the other, and walk hand in hand with each other. I hope that we will one day find a cure for interstitial cystitis.

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This article was published originally on Hormones Matter on April 11, 2016. 

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6 Comments

  1. I had IC for 10 years from late 1982 to 1992. It started early in my marriage. I cannot tell you all the ridiculous studies and nonsense the medical professionals I consulted put me (and my husband at the time) through. The urologists were the worst in fact. The lining of my bladder and bloody urination, 30-100+ times per day, each in excruciating pain. The assortment of prescription medications, particularly the antibiotics, always seemed to exacerbate the problem, and of course, the urine tests never showed an infection, but I suspect the antibiotics had an anti-inflammatory effect. Although I do not know.

    In our 10th year of marriage, we went to an elderly family practice doc for physicals. I listed the problem on my intake forms, with no intention of talking about it, since nothing seemed to work. This doc didn’t do any tests, but prescribed both of us Ketoconazole, an antifungal. My husband’s mild ‘jock itch’ and my IC went away and never came back.

    Today there are safer antifungals today than ketoconazole, but neither of us suffered any liver damage or side effects from this earlier generation antifungal. I keep a bottle available that I bought at a pet supply store. BTW, none of the 10 or more doctors I consulted ever tested for fungus infection.

    Btw, know anyone with cancer, they often die of fungal infections. The medical community is knows less about fungi than your dog knows about algebra. About 15 years ago, our family dog, a lab, was acting very strange and disoriented after rummaging around upstairs. I took him to the vet because he was swaying and couldn’t stand up, like he was inebriated. The vet suspected a stroke or brain tumor, and told me to bring my children by to say good bye. I said he was acting like he was drugged or tripping, and maybe it was mycotoxin or a poisoning.

    The dog got better over time, within hours. Just long enough to cost me $1000 for the CT scans and MRI’s and blood tests showed nothing physically wrong! So, we took him home and gave him activated charcoal. When he was well enough to climb the stairs later that night, he, the dog, took me to the remains of the moldy sandwich! He had eaten a moldy old Jerry’s Sub left by our son in his trash. The dog’s stumbling was a reaction to the mycotoxin from the mold.

    We’re in our 70’s and take no medication. We don’t eat sugars, not much fruit, just fresh berries, some green leafy veggies and plenty of fatty beef, grass fed whenever possible. We keep activated charcoal on hand, oil of oregano, and fluconazole – antifungals, we pick up without prescription when we travel overseas. Mexico and Turkey.

    My best friend was a DO, she died of a fungal infection after breast cancer surgery. Another friend died of a fungal infection, after a mastectomy. Cancer is a fungus. Don’t feed it sugar, and it will die, if it needs help, take some otc antifungal or ketoconazole, or oregano oil.

  2. I was diagnosed at age 18 with IC I tried everything. After having my second child I became depressed and was diagnosed with Bipolar disorder. I take Seroquel and Wellbutrin. The Seroquel has pretty much resolved my IC. I have the odd flare up but I sleep thru the night with Seroquel. It is a strong med. I have had to make lifestyle changes like working part time and going to bed a regular times and find that the side effects of the Seroquel outweigh the IC pain I used to barely cope with. The seroquel makes me drowsy and I pretty much fall asleep within an hour and need alot more sleep than most people but I would rather this than deal with the IC pain.

  3. I received my first relief from interstitial cystitis after starting to take Benfotiamine, Biotin, and Selenium and reducing my intake of sugar and polyunsaturated fats (omega 6). My two sons with autism also have this condition and we manage it in this way. I tried everything else out there that was recommended and none of it helped. May you find relief from such a terrible condition.

  4. Thank you for sharing your story. I also suffer from some of these symptoms and have found relief on the low oxalate diet. There is a Facebook group for this with tons of info in the files. I can now sleep through the night without getting up to use the restroom. I pray you find relief from your suffering!

  5. I’m a female Marine Corps Veteran diagnosed in 2001 with IC. I also had bladder polyps removed. I believe it’s from the anthrax vaccine as IC is only one of a long line off ailments I got after the anthrax series.

  6. It was really interesting the read this from a male perspective as it’s normally a majority female condition. I also hope that we will find a cure for IC one day and that you find help that makes your condition more manageable.

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