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View Full Version : Finally a diagnosis and a doctor who cares



sarahmichelle81
09-23-2004, 06:01 PM
I am 22 years old and I have had severe lower pelvic pain for the last 4 months or so at least. I have had attacks in past years and UTI's but the pain was not as bad until recently. I have had a lot of stress in the last year including getting married and graduating college all in the month of May. I went to my family doctor and he changed my birth control and put me on antidepressants because I was crying the whole time I was explaining my pain. The change in birth control and antidepressant seemed to only make it worse. I stopped taking both. Can the hormones in birth control make IC worse? The doctor then referred me to a gynocologist. I went to 2 different gynocologists and they both told me that there was nothing that they could find and they would need to do a laparoscopy to see if I had endometriosis. I had a bad feeling about that from the start. I didn't have irregular or painful periods and I felt like the doctors were taking a stab in the dark.

After many hours of searching on the internet, I found the ICN website. I read stories about patients who were feeling the same thing that I felt. I knew that this was what I have. I am thankful that I was able to avoid an unnecessary laparoscopy by reading other people's stories on this website.

I decided to see a urologist to either confirm or disconfirm my diagnosis. I filled out a questionaire regarding my symptoms and talked to my doctor and we decided to do a cystoscopy. It was so painful I was screaming and the doctor said that we should set up another time that they can put me under anesthesia. I didn't want to wait for answer so I asked them to go on with the procedure right then. Immediately he said that the walls of my bladder did not look normal. He saw ridges and engorged blood vessels that looked like they were stars. It was neat that I was able to see what he was seeing on a screen too. They proceded to do hydrodistention and what they called "bladder rescue." My doctor put me on Elmiron, Elavil, and Detrol. I am scheduled to go back in a month.

I had to take a leave of absence from work because of the pain and I was so emotional that I even had a nervous breakdown in the vice president of my department's office. I was so embarassed but she seemed understanding. Taking some time off seemed to help me and take some stress out of my life. I started back at work today and I had a good day for the most part. I noticed that I seem to tense up when I am typing and I never even realized I was doing it before. This caused me pain this morning and I hope the stresses of work do not make my IC worse again. I think I am going to buy one of those cushions soon.

I have changed my diet and it seems to make me feal a lot better than I used to feel. I have noticed changes in my entire body and not just my bladder. I used to have really bad acid reflux and be tired all the time and ever since I have been eating an IC diet, all of that has improved tremendously.

My mom talked to Jill Osborne the other day and ordered "The Interstial Cystitis Survival Guide." Jill was very helpful and the book seems to be very informative and useful.

I feel fortunate to have found a doctor that cares and is up to date on the new tecniques for IC patients. I am glad that I was able to get a diagnosis sooner that many other IC patients, and I credit that to the help of this website. I am thankful that I have the support of my husband, family and co-workers who care about me despite the fact that they do not know what it is like to have IC. :)

theclownster
09-23-2004, 06:41 PM
Hi sarahmichelle! I'm sorry to hear you have IC - it's not fun to say the least. I want to welcome you to the ICN. It's a great place filled with wonderful people who can help support you in ways you never imagined. I'm glad you have found this to be a resourceful site for you. I know when the first uro I saw mentioned IC - I found this place to be my safe haven. It can be really hard at times and it's good to know you can come to others who have experienced the same thing that you have. Keep us posted as to how you are doing.

It sounds like you are on some good meds for IC. One thing to keep in mind is we all respond differently to the medication. If there's one med that doesn't seem to be working you may be able to try another that will. Unfortunately, I have found this illness to be a trial and error process which can be rather frustrating at times. It was good for me to gradually ease in to the meds to see which drugs were causing bad side effects. I had a hard time with a couple and they actually made my symptoms worse.

I have also maintained hope that this would be better. I used to wish my life would be "normal" again. I'm happy to report that I have found a "new normal" and I live a pretty full, happy life. It's hard sometimes, especially in the beginning. I've come to learn that life is different for me, but still good. There are days I try to forget, but for the most part I do pretty good.

I will keep you in my thoughts and prayers. May you find relief from your symptoms soon!

With Warm Welcoming Hugs~
Jennifer

Dixiefireball
09-24-2004, 03:56 AM
Oh hon! i'm so sorry you have IC but so glad your mom got in touch with Jill I know she set you both in the right tracks on getting better Jill is amazeing. So is Donna here. Heck we have many amazeing people here. lol I love them all so dearly.
i wanted to :welcome: you to the icn to also let you know your never a lone and we will be here to stand beside you threw it all.
if you need to talk feel free to pm me anytime.
sending you many hugs and prayers
Rhonda :grouphug: :pray:

P.S
try checking out www.ic-network.com/handbook while your waiting for your kit to get to you i feel that you will find it very useful.
You have a wonderful Mom.

SharonA
09-24-2004, 09:46 AM
Sarah... :hi: and :welcome: I am so glad ICN has already been of help to you. Isn't it just the greatest!!!!!!! There are so many wonderful people here who do their best to reach out to others and help. I am also glad that you have support among your loved ones. :)

sarahmichelle81
09-24-2004, 12:16 PM
Thank you all for all of this encouragement! I am optomistic when I hear positive stories because it seems like so many people look at a disease like IC negatively. I hope that I will be able to find a "new normal" soon! I ordered the seat cushion and the Taste of the Good Life cookbook and I can't wait to get them in the mail!

kelly McC
09-24-2004, 01:17 PM
Just wanted to say hi and give youy a warm welcome to the ICN. Both books are wonderful. Take care and good luck with your treatments,
Kelly

VickiB
09-24-2004, 02:41 PM
Hi Sarah,

I wanted to add another hello and welcome!

I'm sorry you have IC, but it sounds like you're on the right track towards getting better! Having the support of family and a doctor you can work with is so important. Plus, it sounds like you have a great attitude, optimistic yet determined.

I hope you find your 'new normal' soon!

Vicki