Newly diagnosed

[chris0410]

Hi. I was recently diagnosed with IC, & I had laparoscopic surgery 2 wks ago where my Dr found a couple other issues as well. Supposedly this Dr frequently treats patients with IC, but I'm discovering that most of the info I'm learning I'm getting online. I had no idea this was considered a chronic illness or that Elmiron, which he just started me on this week, caused hair loss. I'm a little overwhelmed.

[vm]

Don't worry about the hair loss just yet. :) In the study included with the Elmiron patient info. it says that only 3-4% of the patients taking Elmiron experienced hair loss. That is a VERY small number. I don't remember what the placebo groups numbers were. Chances are very good that you won't have hair loss (I've been on it for 4 years and haven't had that side effect), but if you do - it is reversible upon stopping the med and also typically only happens in one spot on your head.

:welcome:, by the way. :)

[chris0410]

Thanks for the reassurance Kim. All this new info is just a little scary. I'm glad a site like this exists.

[vm]

It is scary, isn't it? I remember loving this site b/c I had all this support and information at my fingertips - and yet would log off sometimes bawling my head off b/c I was so scared. It gets better and moments of not feeling so overwhelmed increase. Just try to take it bit by bit and day by day. :)

[SharonA]

:welcome: ...

Yeah, it can be scary in the beginning. But I promise it will begin to make sense. When you have questions, feel free to ask. Usually there will be someone who stops in and either can give you an answer or can point you in the right direction to find the answers.

I am very glad you found us. :)

[chris0410]

Thanks for the support, guys. I had never heard of IC before this, & neither have my friends & family. So no one has any idea of what I'm going through. I just had this "Phantom" pain that no one understood & I didn't know what to tell everyone, especially my boyfriend who would tease me for how often I pee. My supervisor at work said, jokingly of course, that they were just going to attach a catheter so I wouldn't have to leave my desk so often. How do you explain to someone who has never heard of this, that it really is a serious thing. Until now, not even I realized it.

[SharonA]

I am willing to bet that more than 90% of us had never heard of IC before we developed symptoms and had it diagnosed. I know I am part of that large number. I felt so alone before I found this site.

The way I describe what IC symptoms feel like is to ask a question. I ask if they have ever had a UTI? Most women (and some men...like my husband) I talk with will say YES. Then I tell them that my symptoms are like I have an infection all the time that never goes away and has no cure. Then the light comes on in the dark room and they understand. Usually that understanding comes along with a heavy sigh and a very painful look.

To those who do not understand and really could care less, I just say that I have a disease where my bladder does not like my urine and is constantly irritated by it. I can actually see the "too much information" look on their faces and leave it at that.

[vm]

The way I describe what IC symptoms feel like is to ask a question. I ask if they have ever had a UTI? Most women (and some men...like my husband) I talk with will say YES. Then I tell them that my symptoms are like I have an infection all the time that never goes away and has no cure. Then the light comes on in the dark room and they understand. Usually that understanding comes along with a heavy sigh and a very painful look.


That's exactly how I have described it. Or I say it is painful bladder syndrome. Or like the way you feel on a LONG car trip and you have to pee soooooooo bad but there are no rest stops and then when you do find one and pee ---- there's no relief.

[Katie14]

I've gotten most of my information online too so you're not alone there. I happen to be a nurse so I don't know if my doctor thought I aready knew a lot about IC. I didn't. What I knew I'd learned from searching online and reading messages here when I suspected that I could have it.

I could relate to what Sharon said, (the "too much information" look on their faces) :) I've gotten that look several times too. People want to know what's going on with me but when they find out that it's a bladder issue I can tell there's only so much they want to know. Maybe they are embarrassed because it seems so personal.

As to hair loss...A dermatologist told a friend of mine that hair loss that occurs after a stressful event usually happens 2-3 months after that event. I had a stressful event 3 months ago, a surgery. I had also lost a fair amount of weight, most on purpose but some because I felt lousy after my surgery and wasn't hungry. I already thought I was losing more hair than usual before I was started on Elmiron 2 1/2 months after the surgery. I don't know how I'll know if the Elmiron causes me a problem with hair loss unless I start shedding even more or in one particular place. I'm feeling happy though that after a month of being on it I haven't had any problem with it. I tend to be sensitive to medications and get GI upset from many.

[ICNDonna]

I'd like to add another :welcome: to the IC Network.

When I was diagnosed in 1975, I had never heard of interstitial cystitis and I was working in a hospital Nursing Administration department. And when I asked my supervisor, who was a registered nurse with an advanced degree, she didn't know either! Fortunately, my urologist was very helpful and printed out articles from urology journals so I could learn about it.

Back then there wasn't much thought, if any, of a diet connection so we have come a long way since then.

The Patient Handbook (see link at the top of this page) will help you begin the learning process. And, as others have said, if you have questions feel free to post them. We aren't physicians and can't give medical advice, but are happy to share our own personal experiences.

Sending warm welcoming hugs,
Donna

[sandramac]

Just wanted to add a welcome! Sandra

[boohiss13]

Hi Chris..welcome to the board!

Oh, and check your private message box, please. :)

I was just newly diagnosed a few months back too, and had the same thing happen as you: I had no CLUE that this was anything serious at all, and my Urologist still acts like it's a cold or something.

Everyone here has been super helpful to me, and in a very short time I've felt better and more like I have a handle on things.

Welcome again!

Boo

[TexasHoney]

Hello, Chris and :welcome: to the ICN. I hope you find a treatment plan that works for you. I am sorry to hear you have IC :( but I am glad you found us. :) I hope you find a treatment plan that works for you.

Good Luck and Happy New Year

[dawnmarieR]

Hi!!! I am hear to tell I have lost alot of hair form being on Elmiron. I have not lost it in just one spot, it has been all over. I have been using a new shampoo, and styling things. It is called nioxin! Love it. Works great.

[Kara Isabel]

HI Chris!

I am in a similar place as you. For the longest time I though it was my endometriosis causing me all of this pain and problems, so I went to the doc to deal with that and he told me he's 99% sure I have IC and handed me a brochure!! ****shudders*** I had NEVER heard of this either and am trying to learn more about it and cope. There are alot of nice people on this site and LOADS of helpful information! This site has been a lifesaver for me the last few months...

Hugs and welcome!

Kara

[asilva]

HI,
I've just found this website, and just learned about IC within the last few days. Looking back, I believe that I probably have had it for years. (I'm 52.) I don't have a medical diagnosis, yet, but in reading all of your comments and the patients' stories, I can sure relate. I've had flare-ups on and off for many years, but was always able to manage them. I knew there had to be a connection to acidic foods, and I asked my urologist about that. He didn't seem to jump on that one, so I'm thinking he may not be up to speed on IC. Does anyone know of a good urologist in the Ft. Worth, TX area? Also, has anyone tried the alternative supplements?