Perspective....

[dyno]

As a long time IC sufferer.... 34 plus years, I am now 51 years old, I just had my IC put in perspective again the last few days.

I remember how when I started having trouble in school going to the bathroom alot and my folks finally taking me to a Dr. for it how awful it was. Back in the 70's things were a lot different than they are now. I had a hydro at the hospital with Local anesthetic and thought I would never get over the pain of it. I had silver nitrate installations that were extremely painful and then went years without treatment and we didn't know then what we do now about all the diet no-no's etc.

Fast forward to the early 90's. I had a UTI. I still wasn't getting treatment, had a horrible time feeling better after my infection cleared and my first experience again with a uro after I had been diagnosed in Jan. 1975. This was not a good experience either, basically told it was not IC and again I shunned uro's and continued to suffer.

In 2002 after an emergency surgery for gallbladder and of course I had bladder issues due to the IC, my surgeon told me I really needed a good urologist. I happened to be living in a large metro area and got into a good urologist and finally got the help I needed to start to get my IC under some control and give me a better quality of life. He told me I had Classic IC.

I have since moved out of that area and again was without a Dr., no insurance and I get what I think is a horrible flare toward the end of last week. Finally Sat. morning I couldn't take it anymore and went to a local clinic. I had a UTI and I am thinking it is going to take weeks to feel better just like it did with my last one in the early 90's. Here I am just starting my third day of antibiotics and I am feeling so much better. Unless something changes I am going to be back to my normal self in a few more days.

What this infection has done for me is this....
1. Made me remember just how bad I can feel and how others feel on a daily basis.

2. Made me realize just how far IC has come in the last 30 years as far as medical personnel knowing about it. The nurse at my clinic knew what it was and told me it is very much under diagnosed and that it is a shame that it is under diagnosed., folks that is a huge step in my books! We have more educating to do but it is happening!

3. More family Drs. are becoming comfortable in helping their patients with it. I didn't have a Dr. yet. I have been using outdated medication. This Dr. I saw was willing to write me a script for 4 months worth of my meds and said he will continue to work with me since I have my IC under control. At this point did not see the need to send me to a uro. He pulled out his RX pad and asked me what I needed for meds. That would have never happened in the past.

4. My IC although I have small bladder capacity from all the years of damage my bladder is better. My previous UTI it took me close to a month to feel any relief. Now I am on medications, understand the IC diet and understand how to react to flares, I am getting this under control a lot faster.

So I guess what I am saying is that we do learn how to deal with OUR IC over time. If you stay the course, keep working with your Drs. you will get there. There will be times when you hurt and sometimes it is a real good reminder how good your IC really is even when you think you are having a bad day. A UTI on top of my IC did that for me. My bad IC flare days are nothing compared to what this has felt like the last few days.

Hang in there everyone.... there is hope and there are Drs out there to help!!!!

[Katrina]

:) great post! Thanks for that. knowledge ....your doctor and you both are better prepared to treat this...and things will continue to improve! Hopefully there will be a day when it is common to have heard of IC long before diagnosis. :grouphug:

[Stella1609]

Thank you for sharing your perspective--I agree, it is so amazing not only how much the medical field changes, but how fast! Through the years, my symptoms went undiagnosed by my pediatrician, two nurse practitioners, and a couple of GPs. In 2004, I had a urologist who told me to "drink more water" and "use lube" during sex because I had "chronic cystitis," despite never having had a confirmed UTI at that point (of course, I was treated for one every time I went in for my yearly due to abdominal tenderness and micro blood in my urine). Luckily a Google search for "cystitis" brought me here and I was able to find a recommended doctor who knew about IC.

Now, just five years later, I went to a new GP and told him I had IC, and he was knowledgeable about the condition. He referred me to a gyn recently for suspected endo, and the gyn seems to know as much about IC and its diagnosis as my second urologist! He even brought me in the symptom test that is supposed to replace the PST, and explained to me why they use that instead of the actual test, and knew off the top of his head how likely I was to have a positive reaction to the PST based on how many points I ended up with. It was amazing!

I know a lot of people have trouble getting help, and my thoughts are with them, but we are so blessed now with understanding physicians compared to just a few years ago.

[dyno]

I just think it is so important for patients and especially newcomers to know that although they may be struggleing there is progress being made in getting the medical community educated about IC and that the treatments are also progressing.

I know the frustration. I remember my kids telling me that their dad told them after our divorce that IC was all in my head. He got that from the Uro I saw in the early 90's. My kids know now that it was not the case and I was more than validated by a uro who was a former Chief of Urology at a major metro area hospital. Even though I have moved away from him sadly, he got me started on treatment that I am still using today and doing well with. He helped me naviagate the oral meds route to see what would work and what wouldn't work.

Feeling as badly as I did a few days ago reminded me that although we are on here trying to encourage people, sometimes taking the time to take it a step further with some of our own personal struggles and triumphs may be just the encouragement that someone might need.

So I hope I have helped at least a few people today!:)

[Julie B]

Jolene, that is a great post! We have come a long way!

[jvr]

Thanks Dyno, your post was really uplifting! I remember when I was young and having symptoms all the various specialists told my mother it was all in my head. My daughter is now having symptoms and she is being treated as she deserves to be. It's amazing how far things have come from when I was a child. Things will get better and more treatments are soon to come! Your post really made my day:)

Jill