my story

[Jill L.]

Hi, my name is Jill and I'm 26. My symptoms began for me about 2 years ago when I devoloped a very bad UTI. (Actually they probably started when I was 11. For 2 years I had chronic burning in my pelvic region that the doctors could find no reason for. It disappeared about 2 years later, but it has always hurt to a slight degree to pee in small quanties.) I was treated with antibiotics, but as you've heard the story a thousand times, the discomfort never left. I went on to devolop three or four mour culture positive UTI's over the next 6 months. In between infections, I seemed to get new symptoms. I began to feel a pulsing feeling in my bladder on occasion. I felt like I could sometimes acutually feel my bladder. It was strange to actually "feel" and organ like that. I was in so much discomfort and went to 3 uroligists in my area who were basically useless. I finally went to see a well known doctor at Stanford. I did my own research and knew that IC was a possibility. He didn't feel that I had IC although because my symptoms presented a confusing picture for him. I had no tenderness when he pressed upon my bladder. I did have some discomfort holding my urine, but had much more pain after I peed. I would purposely would not go the bathroom for hours because I would feel very bad after I peed. I also have a very high bladder capacity and only urinate maybe 5 times a day. He had recommened some further testing. He referred me back to a uroligist here in my area. He said that if he was not helpful, that I could have him refer me back to Stanford. The uroligist in my area was useless and uninterested. I began to feel better after those gruesome six months and decided to not pursue anything further. I also was having problems with my insurance with letting me see the doctor at Stanford as he was not in my immediate health plan group. I have never been that bad as in the beginning, but have slowly over time noticing new little things. I seem to be okay most of the time as long as I drink water. I I'll start to feel a burn and I'm actually able to feel better after I drink a lot of water. (I don't have that intense pain after I urinate anymore) I still get little flares every matter of weeks or sometimes only every few months, but I have never "felt" my bladder since the beginning of my problems. I also noticed a new symptom last spring when my urine spelled strange. It had a chemically sweet scent to it for about 3 months. My doctor tested for diabetes and a UTI. Both negative. I have not experienced that odor since. That scares me and I don't know what to think of all this. I have another appointment with the doctor at Stanford in December. He was so kind and compassionate and he being one of the few doctors in the country who really understand this disease, is the only one I'll trust to give me a diagnosis. I just don't understand how he didn't think I had IC in the first place. I guess because I had some many culture positive tests. But the addition of symptoms in between? Although I don't not share many of the same physical experiences I read on this message board, I do share some. I feel horrified and confused. I am not in pain every day and am scared by some of the horror stories I read. I often wonder where my body is headed and I swear I could make myself literally pass out from the fear. I don't know what else I could have besides IC. Maybe this time the doctor at Stanford will feel differently, but he's one of the best out there and wasn't sure. Any thoughts or words of advice from anyone? Hope you are all having a good day [img]smile.gif[/img]

Jill

[vm]

Hi, Jill and welcome! When I first found these boards they scared me, too. On the one hand they made me feel better b/c I found sooooo much useful information and support. On the other hand the stories scared me and made me worry about my symptoms progressing.

I don't have an answer in that regard, except to repeat something Donna always says, that the posts here generally tend to be from people who aren't feeling well. The people with IC who are feeling great don't tend to come to message boards b/c they aren't needing as much support. So, I always tried to keep that in mind and also told myself that when I felt better I'd stick around to share a positive story.

Maybe you could check out the Patient Stories section of the site and read up on some people who are feeling good. Good luck with your Stanford doc! [img]smile.gif[/img]

[ICNDonna]

Kim is right --- for every person posting that they are in pain, there are hundreds out there with IC who are feeling good and don't need support.

That's one of the reasons I stay around, even though I feel good most of the time.

I was diagnosed in 1975 --- and my symptoms have not worsened since that time. I still have to avoid my own personal diet triggers, have flares occasionally, go for monthly DMSO instillations, and have hydrodistentions when my symptoms get bad. This has not changed in my almost 28 years with diagnosed IC. IC is not considered to be a progressive disease after the first few years.

Sending warm, healing thoughts,
Donna

[Jill L.]

Donna, you say that IC is generally not progressive after the first few years...does that apply to even mild cases?It seems as if some start out fairly mild but the move into more advanced stages a number of years later. Does this mean that one you first began to experience symptoms, that it will probably not progress after those first two initial years?...Also some people posting I've read consider themselves to have mild cases..What exactly is considered a mild case? I guess I'm just wondering how mild IC can present itself and if most times will eventually progress. I'm also reading so much about diet, and honestly unless I'm just really clueless, I feel like I can eat most things If I just drink tons of water. Sorry, I don't mean to be obsessive, I just am feeling so anxious because this is all new to me. I wish this disease was more predictable so I knew what to expect. Not good for someone who has control issues [img]smile.gif[/img] !

Thanks for your help [img]smile.gif[/img]

Jill

[vm]

Here is something from Dr. Parson's guest lecture:

[quote]<drparsons> The timeline consists of three general areas of the disease.

Early phase - Patients are usually 16-20 years old when the disease first appears, usually with symptoms associated with perhaps sexual intercourse, previous bladder infections or, even, for no obvious cause. Symptoms may occur for a week or two, three or four times a year and they seem to be relatively well in between flares. These patients frequently do not get worse, though a percentage of these will go to the middle phase of the disease.

Middle Phase - This person is more likely to be anywhere from 22 to 40 years old and have frequency, which they may ignore, of perhaps 10 times or more per day. They may have intermittent or low-grade pain cycles as I've described above, again with sex or their menstrual cycle. IC tends to flare a week before the menstrual cycle, hence their confusion with gynecological symptoms. Here I think we have 15 to 20 million women who are chronically symptomatic. If they were treated at this phase, 90% will lose most if not all of their symptoms, occasionally having problems perhaps during allergy season. Unfortunately, 99% of these patients receive no appropriate diagnosis and no effective treatment.

Advanced Phase - A small percentage of patients will escalate after a number of years to the advanced phase of the disease, where they void very frequently, perhaps fifteen or more times a day. Some experience chronic disabling pelvic pain. There may be 500,000 to a million people in this category.

End Stage - Only a very few go to what we can loosely call end stage, where they experience very severe symptoms. I doubt that there are more than 20 to 40,000 people in the US who would be in this category.

The main message is that if we recognize that mid phase, where there are millions, and treat it properly… no advanced stage would be occurring and a lot of people would be leading better lives. There will be a paper coming out in the American Journal of OB-GYN in the next six weeks that documents that 80% of women seeing gynecologists for chronic
pelvic pain have IC.

<hr></blockquote>

[Jill L.]

Hi Kim, <img src="graemlins/hi.gif" border="0" alt="[hi]" />

Thanks for your response. That does make me feel a little bit better. I really do appreciate everyone on this site. You are all so supportive and wonderful!!!! I hope everyone is having a good weekend [img]smile.gif[/img]

Take care,

Jill <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />