PDA

View Full Version : Misdiagnosed for a year...finally the answer



sylvieCT
10-23-2004, 01:04 PM
My name is Sylvie. I am a forty-one year old woman. I have a beautiful family - three great children and a supportive husband. I am a classical musician. I work full time and teach music lessons at home as well. I actively participate in our music program at Church. I love to go camping and spend time at the beach.

Last year I went to the doctor with what I thought was a pretty bad urinary tract infection. The doctor took a sample and, although she didn't see a bad infection, she thought she saw extra protein in the urine which could be a sign of infection. She put me on an antibiotic for five days. Five days later, I called the doctor to say that I felt worse. My symptoms were constant urination and severe abdominal pain and pressure in the bladder area. She was moving offices and was not available for two weeks. I spoke to a doctor on the phone who was covering for her while she moved offices. This doctor prescribed another antibiotic that I took for seven days. After seven days, I felt even worse. I was hardly able to walk. I finally went back to my original doctor. I could not drive and needed the assistance of my parents to help me into the doctors office. My doctor was very caring and very concerned. She took another urine test and sent it to a lab for a better diagnosis. In the meantime, she put me on another course of antibiotics and gave me some medications to soothe the constant urine problem. Again, I waited. I did not hear back from the doctor. My condition seemed to be getting worse. When I finally called the doctor and pushed for my results from the lab - I was told they were negative. There was no infection. The doctor felt that the results simply proved that the antibiotic was working so I continued to take it and I got worse. After several more weeks, the symptoms were starting to really frighten me. I decided to go to the emergency room. At the emergency room, they told me I had pelvic inflamatory disease. I was given more antibiotics and injected with antibiotics. I went home feeling hopeful with this new diagnosis. After completing the new treatment, I was so ill I thought I had cancer. I called my doctor in tears. She then ordered a series of x-rays. - every kind imaginable. I had no kidney stone. I didn't have anything except an "extended abdomen" from all the medications. I was referred to a uroligist. He said he saw nothing wrong with me and sent me home. He saw me for five minutes and diagnosed me that quickly as well. Desperate, I contacted a family member who worked at a doctors office and the doctor was willing to see me. He again diagnosed me with pelvic inflamatory disease. He put me on more antibiotics and started a series of antibiotic injections over the course of many days. Still, no results. I was in severe pain and discomfort - bed ridden. My mother recommended going to a gynocologist who had an outstanding reputation. This doctor told me I did not have an infection and never did. They took me off all antibiotics and started giving me medication to soothe my bladder. I wore medical patches and took medication to help soothe things. This entire time period lasted about two months. I missed work and life during this time. Finally, I was able to resume some of my activities, but I never fully went back to feeling like I was urinating like "a normal person." I lived with it.

Then, about seven months later...the whole nightmare started again. I was urinating maybe thirty times a day or about every fifteen minutes. I felt enormous pressure. I like to say it feels like a baby's head is crowning. My groin area just ached right down to my thighs. I thought.."Oh no, another infection." I went to my original doctor and heard the same words..."we see a little protein so we are going to put you on an antibiotic." I took the antibiotic and felt worse. This time, I went directly to the doctor who told me I didn't have an infection to begin with. He listened to all my symptoms from urinating constantly to severe pressure. He thouroughly examined me and reassured me that my bladder wasn't coming out which is what I thought was happening. He looked over all my past records and asked me if I ever heard of Interstitial Cystitis. He gave me books to read, educated me on diet, and started me on Elmiron.

That was four weeks ago. I am still in a relapse, but I feel sane and grateful to have a diagnosis. I wish is was something that went away for good with a magic pill, but knowledge is power. I am working really hard on my new diet. I was drinking up to four cups of coffee a day for twenty years! And, I was a chocoholic! The last relapses took me out of work and I was unable to do anything. Matter of fact, I was crawling on the floor at one point. This time, I am coping with the symptoms and maintaining my life. My work has been understanding and set up a family medical leave for me if I need it. I can play my music, continue to teach, and enjoy life. Using a heating pad at work and while I play music has been the most helpful thing for me. I don't feel great and it is not fun to urinate every twenty minutes and feel constant pressure, but knowing what it is and that I can help make it better has been a great relief for me!

Thank you for reading.

kelly McC
10-23-2004, 01:27 PM
Hi and welcome to the ICN,
I was sitting here reading your story and what happend to you! It brought back memories. I am so sorry so many of us have to go through that process.. But I guess they have to rule out other possibilities first.. .. The Elmiron can take a few months to work. The diet can help and it was nice to hear your doctor told you about it. The diet helped me alot.
Here is a link to the handbook http://www.ic-network.com/handbook/ if you have not looked at it yet it has a lot of information.
Kelly

Dixiefireball
10-23-2004, 01:40 PM
:hi: and :welcome: to the ICN family sorry it took so long to get a dx but at least they have started you in the right dir.
the diet is very imporant remember its not written is stone you may be able to add things back to your diet as time goes on.
Kelly gave you a great website to look at its very helpful with treatments and the diet also.
we are here for you and we do understand.
you will find we are a very careing family here.
Has your doctor order any test? Has he put you on elimron or talked about dmso treatments with you. You will find a lot of these answers on www.ic-network.com/handbook the stame site kelly gave you.
please keep us up todate on how you are
sending you hugs and prayers
rhonda

sylvieCT
10-23-2004, 01:48 PM
Thank you for the website and the encouragement. My doctor hasn't ordered any tests and to be honest, I am afraid of the tests. Part of me is afraid - What if the tests show nothing again? Is that possible. I feel so relieved to have an answer that I am afraid of a test taking it away from me. He is going to see me in six weeks. I started Elmiron and I follow the diet religiously. I will talk to him about the tests. By then, I will have had more time to diagose the whole thing. I am not in the excrutiating pain that so many others seem to be in. At this time, I urinate every 15 - 20 minutes. It does not sting, but it is not comfortable either. It is tender. My worst symptom is the tremendous pressure I feel 24 hours a day - Like I am about to give birth and there is no relief with urinating. None at all. Thanks for all the support. I feel like crying just knowing there is someone out there to talk to. Although my family and work is supportive - they tease me (trying to help me, not in a mean way) and they don't understand what it is like to live this way. Thanks again. Sylvie from Connecticut.

Imustpee
10-23-2004, 01:53 PM
Hiya! I am a piano teacher and for the last 13 years I played in a well known local rock band..... welcome to the board...

VickiB
10-23-2004, 02:00 PM
Boy, Sylvie, I can sure understand that feeling of what if they take this diagnosis away from me! I took the scenic route to being diagnosed,..it was this,..it was that,...try this antibiotic,..maybe it's in your head,...etc, etc! That was the worst period in my life, and I don't ever want to go back there again!

Still, one has to do what one has to do to get to the root of the problem. I just wish so many of us didn't have to go through multiple doctors & diagnoses to get there!

Vicki

Trishie
10-23-2004, 02:05 PM
Sylvie
:welcome: I was just diagnosis 2 days ago. I didn't have a lot of pain, just severe freq/urg. I was diagnosis with h/c. It took 3 docs and 4 yrs. to find out what was wrong. I have ony been on elmiron for 2 days - hopefully we will get better!

sylvieCT
10-23-2004, 02:13 PM
I am excited to meet another musician. I am thinking that teaching out of my home would be a great job for me with this condition! I currently work 40 hours a week and teach 3 nights a week and all day Saturday. I can't do it anymore, but I can't leave my high-paying job yet either. I am hoping to find a part-time job, which I think I can handle and increase my teaching. It would work well with the amount of time I have to go the restroom. I am pretty miserable working my full time job right now. So, do you still play out or do you stick mainly to teaching???

vm
10-23-2004, 02:53 PM
:welcome: So glad you found us. it is exciting to hear that you are on Elmiron and are already doing the diet. That is so key for many of us.

Hope to see you around! :)

KristaM
10-23-2004, 03:00 PM
Welcome to the boards.. You will find everyone so helpful and nice here. We all know what you are going through.. Good luck with your treatment.
Krista

Myli
10-23-2004, 06:39 PM
:welcome: Getting a diagnosis is terrific, I'm glad you finally have one! I wouldn't fear the tests though. If you don't have IC, you do have something and it needs to be fixed. Knowlege is the key. Having said that, it does truly sound like IC.

I'm sure you are finding lots of information on the website and the boards, as well as inspiration, encouragement and hope. Feel free to ask any questions or to just vent as needed. This is a very helpful and supportive group, who all share something in common with you.

Glad you found us!!

:grouphug:
Myli

Sarojini
10-24-2004, 05:20 AM
Hi Sylvie,

Just wanted to :welcome: you to the ICN!! The others have already given you great advice about checking out the Patient Handbook on the site. The other thing you might do is read the book The Interstitial Cystitis Survival Guide by Dr. Robert Moldwin -- it's an excellent book and has detailed info on the diagnostic tests used for IC, current medications and therapies, and good self help info as well. You can buy the book in the ICN Shop at http://www.ic-network.com/shop and it is also available on sites like Amazon.com or BarnesandNoble.com. Perhaps even your library has a copy you could check out!

I'm so sorry you're dealing with these symptoms -- I certainly know what they're like and hope you can find some effective treatment soon. One thing you may want to keep in mind is that Elmiron can take 6 months to a year to work in many cases, so you may want to discuss short-term symptom control options with your doctor so you are comfortable in the meantime! :grouphug:

michie
01-08-2005, 02:50 PM
:welcome: like you I am new. i go for a cysto/hydro. on the 13 and honestly am holding on to the hope that it will be something els and the dr may be wrong. Im sorry u are in so much pain. have you tried using pryidium for the burning it helps me not some but its a great relief and you dont have to go as much.

good luck

michelle