My experience with IC

[kimsv]

A different condition, same concept.

I wanted to share my experience with Interstitial Cystitis. I am a 20-year old female and it has been 2 years since I was diagnosed. To say the least, it is a rather difficult journey just in trying to receive a diagnosis let alone to find a treatment that works for you. For those who are at the beginning of their paths to finding a diagnosis let me just take a moment to say don't give up. It's difficult, it's heartbreaking to be let down time and time again but it's worth it. It's worth knowing you've exhausted your efforts and if the conventional method doesn't work find another way. Don't settle for one doctor's advice if it's not best for you, move on to the next.

My next advice would be to expect the best but prepare for the worst. Getting a diagnosis is a step in the right direction but there is still a long journey ahead of you. It will be painful, you will have good days, you will have bad days. In my experience, I was misdiagnosed once. I was diagnosed with overactive bladder and received medication. Although it relieved many of the symptoms I was struggling with it was not a long-term solution. If I had settled for one doctor's advice I may have never truly found a solution to my health condition. Once I found the doctor who was right for me(a urogynecologist), I was then able to take the next step into recovery. The visit was a little over an hour; I left with many of my questions answered, a list of possible treatments, and a number of resources I could use to make myself knowledgeable of my condition. The feeling I left with that day was one that only once experienced do you finally know you've found what you've been looking for. The next step was recovery.

My road to recovery was bumpy and I had to really discipline myself to let go of many things that I may not have wanted to. I was eighteen, of course I wanted to have fun with my friends, of course I wanted to eat whatever my heart desired, of course I wanted to live my life in a normal way with no limitations. But my body, my condition, directly impacted me. It did not matter if I desired to have a regular life, if I did not make a change I would not have been able to get better and ultimately I may have well gotten worse. I changed my lifestyle:

- no dairy

- no caffeine

- no alcohol

- no spicy food

- limit stress

- proper hygiene

- physical therapy

- therapy

- and more

My final advice for those of you reading this post for either your own personal experience or for another is to set a standard for the people you hold relationships with. Primarily friends, family, and intimate partners because they have a strong influence on the progression of your recovery. Surround yourself with individuals who understand the circumstances who will aid in your progression towards health instead of hindering it.

If you have any questions feel free to leave a comment or message me directly.

Hope all is well,

- Kim

[Starfish123]

I was also told no carbonated drinks.

It’s great you are doing this but my triggers were also a period, intercourse and having a smear test.

My condition has all but gone now after suffering for over 10 years, I was given a mirena coil for heavy and constant bleeding, this made it much better, no pain etc, then I had the estrogen patches, again an improvement, so much so it’s not an issue anymore. I’ve since had ovarian cysts removed and again improvement to like I was before this problem. I was too young to be menopausal but it looks like this was indeed the issue and I suffered unnecessary for more than 10 years.

If in doubt get your hormones checked.

[jostafford0]

Hi Kim, thanks so much for your advice. My triggers are alcohol, intercourse, spicy food, monthly cycle and dehydration. My flares reduced a lot when I was diagnosed with under-active thyroid and started on medication. Jo x