Interstitial Cystitis Diagnosis

In the first few days of August 2020 after 6+ years of struggling, I finally got an answer to what I had been experiencing. The constant on and off flares which only escalated had led me to seek out a specialist- I saw a Urogynecologist.

Long story short it's a chronic bladder condition called Interstitial Cystitis. It's pretty painful and it doesn't go away. It's unpredictable. Though it does have the possibility of remission. Remission can happen periodically and sometimes even for an amount of years.. which had given me some sort of hope.

Since I was diagnosed I've been working on figuring out what causes symptoms in my body. The year before my diagnosis it had completely taken over to the point where I would be in a flare for 3 weeks straight unable to really move or do anything.

I spent 8-9 months of practicing a detailed elimination diet, physical therapy, practicing exercises that can help with the symptoms/flares; the pain had gotten significantly better in the sense that I wasn't couch bound every day. Though it was better than it had been- knowing I wasn't yet in 'remission' felt so defeating. I was doing absolutely everything I could think of to try and get myself there. It had already drastically changed my way of living and it was affecting my hope.

It would be amazing if I could just predict and know how and when it will act up. I think that alone would be such a huge help but it's only possible to an extent. The minute there is a new stressor or even an old stressor present the whole game changes again. It would be amazing to make commitments and know I could 100% keep them- but it sometimes results in me just trying to get through the day at all without making it worse.

More and more I've realized that when a person has a measure of understanding of what this is condition is, it gives a sense of a relief and has meant so much. The understanding from those closest to you when they can really understand that there isn't a fix or solution, it changes a lot of things.

It's now been almost 10 years of truly having active chronic flares, and one year of feeling some measure of control again. I'd love to take you on my journey in the hope of offering comfort and understanding. If you have or are experiencing symptoms, or if it's someone you love, I hope that my posts will offer some insight and possible relief. Maybe some of the things I've found beneficial might help you as well.

- Lis

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