My experience with IC

[kimsv]

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

[Lit27st]

Hi my daughter suffers terribly with her bladder. The doctor told her that her bladder doesn't empty properly, she had a test done. She is supposed to cathertise herself twice a day. She is in so much pain that she can't do that, her euretha hurts to much. She is constantly going to the loo every hour or sometimes before that. She can't enjoy the things other people do, and others don't understand that. We had to fight to see a consultant because all the docs do is fob you off with tablets. It's so hard to see her in pain all the time. We don't know what to do about it. X

[kimsv in reply to Lit27st]

Hi,

I'm really sorry to hear about what is going on in regards to your daughters situation. As I said in my post the first step is to not give up, and not give in to just one doctors advice. In my experience I was on the edge of having to catherize myself but I was advised by a urologist that it usually doesn't have many benefits. Can you ask yourself how many doctor visits you have had as well as whether or not you have tried different specialists? I went to my PCP(Primary Care Physician) many times before finally going to see a urologist, gynecologist, as well as a urogynecologist.

I see you care for your daughter very much and that is very important right now. A good support system really does create a positive influence in the recovery to health. If this hasn't been done already remove any toxicity from both of your lives. That being any bad relationships and/or bad habits.

Finally I believe that doctors play a key role in a diagnosis but until you find a proper physician it is important you try doing some of your own research to find a treatment to lessen the symptoms immediately. Diet changes, lifestyle changes, pelvic floor therapy, and possibly counseling/psychotherapy. Safe to say you already know this but painkillers are a short-term solution but a remedy to stop the pain is vital, so find a substitute or take them in moderation.

Stay strong and well,

-Kim

p.s you're more than welcome to message me if you have anymore questions or concerns.

[Lit27st in reply to kimsv]

Thank you so much for your reply.