New member

[cc_orchids]

Hello everyone. I have been reading this site (and message boards/threads) for a week now and I have been in an emotional rollercoaster. I have been in a deep depression, which I'm sure a lot of you understand. I have a few question regarding IC. First I will start with my story. I started having frequency in college ~7 years ago. That is also when I started getting UTIs and taking birth control. I have always drank a lot of water so I attributed my 15+ bathroom frequency to the amount of water I drank as well as having a small bladder (my conclusion of course, not an MD observation). This last May, I was hospitalized due to a severe kidney infection. After I left the hospital, I started getting urethra burning (does this make sense to anyone?). Frequency also increased. I had gone to a urologist about a year ago and they found blood in my urine but they never followed up. My new urologist has diagnosed IC. I am very scared! I've never really had pain anywhere not even now although I do ocassionaly have pressure in my pelvic area and tightness in my legs, but I would not consider it painful as oppossed to uncomfortable. My main question is... will I eventually get pain? Are these current symptoms the symptoms I've been dealt with or should I expect them to gradually worsen? I have read statistics that people with IC rate their quality of life as worse than a patient with last stage renal failure, is that what I have to look forward to? Also, I have tried looking for a support group in San Diego but all the posting I read are too outdated (2002, 2003). Is the support group still active? If so, can someone give me more updated, accurate information?

Thank you and hope to "meet" some of you soon.

[kk928]

I pulled this from this web site. Maybe it is old and you already have tried this group, but it has contact #'s that may lead you to another group.
However, possibly it is a current group!-- Kathy


The IC Support Group of San Diego
Group Sponsor: Lowell Parsons, M.D.
Group Contacts:
Cathy Salazar-Martiarena - (858) 672-2249
Group meetings are held from 1:30 to 3:00 pm on the first Sunday of April, June, October & December at Thornton Hospital (part of UCSD Medical Center) in the Coral Conference Room (located on the first floor near the cafeteria). Thornton Hospital is at 9300 Campus Point Drive, La Jolla, CA 92037. The hospital phone number is (858) 657-7000 and the phone number of the Coral Conference Room is (858) 657-6644. Please check out our group website

[leelee88]

Hello and :welcome:

[GoldSeals]

Hi cc_orchids,
You can work with your doctor and try the many different remedies posted here on the board.The ic diet would be a good start.You can gradually introduce different medications, and see if theres any improvement.Sometimes you may find that lucky remedy that will put you into remission.You can pretty much tell if its your bladder thats involved by trying all these things.You seem to have all the symptoms of ic,but only your doctor can rule out the other stuff.
Regards,GoldSeals:)

[meandmybladder]

Hi cc_orchids. :welcome:

I'm new here myself but, I can honestly say, you've come to the right place. I've learned more in the last month of being here than through all of the internet and physicians themselves.

The pain level for each person is different, as you can see by reading here. Some are in constant pain while others have "flares" or no pain at all, just the pressure you describe. When mine started, I too had just the pressure. It wasn't a true pain, just an awareness that the bladder was there and felt heavy. After a UTI is when my pain started. I thought the UTI wasn't resolved. It just seemed to get worse. I could then feel my bladder go into spasms.

After finding this site, I started the IC diet along with a prescription for Levsin (anti-spasmodic) & pyridium which helped to numb the bladder. It made a world of difference and I'm not kidding. I couldn't believe how much I was doing wrong. I was drinking cranberry juice by the gallon to help get rid of the "infection" I thought I had. I'm a diabetic and used aspartame and splenda for everything! I ate pasta with sauce every Sunday and drank 6 cups of coffee a day. When I changed my diet, my life came back.

No one can determine how this will affect any particular person. Some have progressed, others have not. It's very unique and individualized. I too was very scared so I know that feeling. Try to concentrate on learning all you can about this condition and give the diet a try. Hopefully, you'll be able to remain pain free.

[LouLou]

Hi,
I'm new to this board too. This may give you some reassurance. I was first diagnosed with IC 5 years out of college, after a series of urinary tract infections- though my doctor called it something else. He did something- I don't remember what, and told me to stay away form citrus and acidic foods. I did and was great for twenty years! Mine did not come back until about a year ago and didn't start getting bad until 6 months ago when I got a very bad infection. Take very good care of yourself and follow the diet and you may be lucky. As they say here- everyone is different. I wish you the best of luck!

[sandymarie]

I just read your post and wanted to tell you please not to stress about having ic. I am not new to this disease. I was diagnosed with ic in 1980 or sometime within that time. I have had it a long time and fear and stress is the worst thing you can do. There are a lot of treatments out now that were not available back when I was dxg.ed with ic. It is not written in stone that you are going to get worse and some go in remission. The best thing you can do is get on this board and read the post and learn as much as you can about ic. The ladies on here are very helpful. The main thing is don't go thru this alone. You are not by yourself. Find a good doctor that is knowledgeable in ic and try things until you find something that works for you. Everyone is different. Since I have started on this support I have learned a lot and am stilling learning. Try the things in the ic handbook, such the diet, there is a world of info in the handbook that I have not known as long as I have had ic. If you give up and just expect to get worse, that is probably what you will do. I Don't let anyone tell you it is in your head, it is not and is a very real disease. Try not to let others discourage you esp. family, friends and those who won't listen to how you feel and what you are feeling. I guess what I am trying to say in a nutshell is this. Someone on this sight has a quote. I have ic, it does not have me. That is true words of wisdom. Please don't accept the worst things you hear. You will survive and not everyone gets to the point of the quality of life that you have read about. You are important to everyone on this support site and there is a world of information and support here.

Hugs and much love . Be Blessed.

Your ic sister

J.J.:pray:

[cc_orchids]

Thank you so much to everyone that responded. You reached out to me when I felt extremely alone. Last week was the worst week of my life as I faced the reality of my diagnosis. Sorry it has taken all weekend to reply but I had to stop looking at this website at least for two days. I talked it over with my family and they are extemely supportive (my sister will stop making coffee in the morning - she says we don't need it anyway:) .

I look forward to sharing advice, experiences, and success stories with all of you, my new IC friends.

I'm not sure if people say their names here but why not, my name is Claudia.