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Me? An Autoimmune Disease?

I was recently diagnosed with Interstitial Cystitis.

In late May I started feeling some weird symptoms in my lower belly, it felt like flutters and it wasn't painful or discomfort just a weird feeling of fluttering is the only way I can really explain it but my symptoms quickly changed after a few days, it was more of a heavy feeling like a "I have to pee heavy feeling but no pee would come out" but it was still mixed with the same fluttery feelings I started with.

I though that I had a yeast infection at first, I say that because I have had one of those and the symptoms sort of felt the same. I called my doctor and she put me on a yeast medication and of course swabbed me to make sure. I was on day 8 of the pills but my symptoms felt the same so the doctor called in a stronger yeast medication and I took that for another 3 days and still nothing. Finally my swab results came back and everything was negative. I was concerned, I knew something was wrong, so I contacted my nurse friend which got me an emergency visit with a urologist specialist. He called me the very next day we talked and he sent me in the very next day for a CT Scan.

I couldn't wait for answers I was already freaking out so I followed that up with a face to face appointment with my OBGYN and explained everything to her and what I had gone through up until that point. She sent me home with a medication to see if my symptoms would subside but didn't want to tell me exactly until she knew for sure.

Sure enough the medicine worked BUT with tons of side effects. I got bad head aches, nausea and fatigue but my symptoms of the flutters and heavy bladder were gone and Im talking gone the same day. Later that same afternoon I got a call from the specialist, he got my scans back. I have a large stone in my bladder that needs to be removed but I also have something called IC. He told me that the medication my OBGYN gave me in conjunction with my symptoms and the CT scan will allow him to say that he thinks and is 99% sure is Interstitial Cystitis. Okkk well how do we know for sure sure like 100%? Stop taking the meds he says which I was happy to because they were making me so sick, sure enough the next day the symptoms were back.

Now the tricky part, there is no cure for IC as of yet so what do we do now?

Let's find a medication that works to relieve the symptoms right now the specialist says, what he didn't mention was that was going to be the hardest part. I went from one medication to another to another AND they were not cheap, if they didn't work they went to the garbage I couldn't return them.

Finally the last medication to try and because most insurance companies don't cover it the doctor waits until last case scenario to give it to his patients. My prayers were answered the medication worked!! BUT its $850 a month for a 30 day supply and insurance only covers $450. So out of pocket this medication costs me $10.80 per pill. They say this medication is expensive because its new on the market. In the beginning I had to take it every day once a day and that went on for about 4 weeks or so but now I can take it every two days. It doesn't give me any side effects that I notice except my hair is falling out but that could be the ketogenic lifestyle or the change of season.

BUT I might not have to take this medication for too much longer. Im set up to have a procedure on August 10th, Its called a cystoscopy with hydrodistention. A cystoscopy with hydrodistention is when the bladder is filled with a high pressure of fluid. This causes the bladder walls to stretch and the blood vessels to burst allowing the pressure on the over active nerve to release and reduce the pain and discomfort it is causing the bladder. They will also do a biopsy and examine the bladder walls to see how long I have had IC or if this is something that just started. They will also remove the stone while they are there because it needs to come out anyway.

As for this procedure it might not work the first time, he has had to do it twice to some of his patients and you always have the chance that it might only last 3/6 months the first time and you might have to go back and have it done again OR it could work for years and years. IC has so many different symptoms, thank god I have the most mildest he says.

I do have a very close friend that was diagnosed with the same thing a few years ago except her symptoms are severe. She has bad stabbing pain, burning and heaviness ALL DAY LONG. She hasn't found a medication that works for her either. She has had different procedures done even surgeries and still nothing has helped her. I pray that she can get some relief from this soon disease soon because it sucks to feel this way. My doctor said they are always doing research on this disease because 3 to 8 million women suffer from it. He also mentioned that men suffer from this as well but not as many as women.

The exact cause of IC remains a mystery, but researchers have identified a number of different factors that may contribute to the development of the condition. Many researchers believe a trigger (caused by one more events) may initially damage the bladder or bladder lining, and ultimately lead to the development of IC. Some of these triggers may be:

  • Bladder trauma (such as from pelvic surgery)

  • Bladder overdistention (anecdotal cases suggest onset after long periods without access to bathroom facilities)

  • Pelvic floor muscle dysfunction

  • Bacterial infection

  • Primary neurogenic inflammation (hypersensitivity or inflammation of pelvic nerves)

  • Spinal cord trauma

  • A defect in the bladder tissue, which may allow irritating substances in the urine to penetrate the bladder.

  • Something in the urine that damages the bladder

  • Changes in the nerves that carry bladder sensations so pain is caused by events that are not normally painful (such as bladder filling)

  • the body's immune system attacks the bladder

  • t's often mistaken for a urinary tract infection (UTI), but there is no infection.

So I continue living my life the best way that I know how. Im taking my medications every two days that allow me to be pain free and comfortable. Im looking forward to my procure in a few weeks in hopes I can stop taking these expensive medications but at least I know I have something to fall back on in case the procedure doesn't work the first time.

I pray for everyone that is suffering from a disease or any health issue for that matter. It's very scary thing to live in the unknown. If I can be of any help or answer any questions that you may have please email me directly here. I would love to chat and help you in any way I can. All your emails are confidential and I will not share your private and personal stories with anyone.

***I'm not a doctor, Im just a person sharing my medical diagnosis and my opinions with my friends***

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