Updates on My Battle with Interstitial Cystitis. A New Med Brings Hope.

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I have already blogged quite a bit about my disease but since there is an update in my progress with fighting it I wanted to report it.

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What is Interstitial Cystitis?

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If you didn't catch my other blogs I will briefly explain what IC feels like. It is an auto-immune disease but feels much like having a UTI. For some people it is mild and others very extreme. Mine was mild for many years but stress and heavy drinking after losing my best friend caused me to start flaring. The flaring never stopped. It is what IC forum people say may be my "new normal".

For me this has been constant burning and pain. EXTREME urgency and frequency 24/7. I usually wake up at least 8 times at night to pee and pee even more during the day. I can't just wear diapers like many people suggest because not only is my urine incredibly acidic which wouldn't be good to sit in when I have issues down there but also I sometimes am in horrid pain while straining to pee out what feels like glass shards. I need a toilet.

This disease has robbed me of any semblance of a normal life. I can't have sex or date. I can't even go out in general. I can't eat or drink most things and I am growing increasingly isolated as friends and loved ones get tired of dealing with my depression surrounding this illness and sometimes even seem to think I am exaggerating and could lead a normal life if I wanted to badly enough.

I can say from my recent trip to the mall where I forced myself to go for an outing because I needed to get out of this room and wanted desperately to just have one "normal" day that this is utter rubbish. I had to just spend the entire time looking for bathrooms while hobbling in pain from store to store. It was miserable. I couldn't even go to the park the day before because I was literally just glued to the toilet. I haven't been able to work or live my previously active lifestyle in almost 2 years now. I am struggling because of this physically, mentally, and financially.

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A new medication brings me hope:

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So, now you are caught up with where I am. I have become increasingly desperate and still do not have medicaid. However, I am on a medication called Amitriptyline which gives many IC sufferers significant relief. I am hoping this gives me enough relief that I can get to all my appts and get on medicaid where I can continue exploring options for how to deal with my very extreme case of IC.

There is also a chance it will afford me 0 relief so I am trying to not have any expectations but when I read reviews like this:

"I was diagnosed with interstitial cystitis several months ago. The pain was so debilitating that I couldn't even see patients for about 3 days (I'm a dentist). The pain brought me to tears. I was afraid that I would have to go on disibility. My new urologist put me on amytripyline a few weeks ago. It worked almost immediately. Most days I'm almost pain-free. I got my life back."

It is hard to not get my hopes at least a little bit up. However there are also reviews like this:

"Unfortunately this medication had a very negative effect on me. I was supposed to take it for occasional nerve zaps that I get from having IC. When I took it, it didn't take the pain away. Instead it changed it into a CONSTANT burning pain which is way worse than the previous zaps. I stopped taking it, and although I was on a low dose 25mg a night, I got horrible withdrawal symptoms and am still dealing with panic attacks upon waking up. I know this drug has been a godsend for some people, but please be careful because it has the potential to make things way worse."

So, trying to keep my expectations low. I also cannot afford to take a high dose and worry I won't even be able to afford to take it long enough to get relief. But many people get relief with small doses of 10 or 25 mgs. So my hope is that I am one of those "lucky" people. :)

Also, side effects....a lot of them. I have so far only experienced the drowsiness which at this point is serious. I can barely keep myself awake to write this blog and woke up at like 3:30pm. I have read that these effects will diminish over time though a bit of grogginess will remain. And most people seem to gave 30-50lbs on this stuff. This scares me because I already battle with PCOS and insulin resistance and am already overweight. However, if I really do get relief it will mean I can be active again. I used to be incredibly active so if it works I think it will be a fair trade off. I will be very careful about my consumption because god damnit I will cry if I hit 200lbs.

So, this is day 1 at the lowest dose of 10 mg, well technically 12.5, I cut the pill in half to limit drowsiness and get my slowly acclimated to this new medication.

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How does an anti- depressant help with IC?

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Though Amitriptyline is an antidepressant and anxiety med it is actually widely used for pain relief of all sorts. How it specifically helps with IC is as follows:

• Anticholinergic effects, meaning TCAs relax the bladder and decrease the intensity of bladder contractions. This effect diminishes urinary frequency by delaying the desire to urinate.

• Antihistamine effects or blocking of the response that occurs during an allergic inflammatory reaction and calming IC pain.

• Blockage or re-absorption of certain neurotransmitters (such as serotonin and noradrenaline) prompting the brain to ignore pain impulses.

• Sedative properties. TCAs also make you sleepy and if taken in the evening can help decrease sleep problems.

So, this is where I am and I will report back randomly to share progress or lack there of with fighting this awful disease.