Hi, I'm new, here and to this disease

[Ridesgr8]

My name is Erin,
:grouphug: I've only recently had problems. The last 7-8 months or so. I've been in and out of so many different doctors. Each with a different notion of what was going on. I have also checked myself into in ER room (due to pain) 2 times in these last 7-8 months. I've had many visits with my urologist, and through the process of elimination he/they decided I had IC. I am only 23 years of age. I live a VERY active life style that involes horses. I've been trying to ride, but the pain keeps me on the ground a lot. I haven't tried the medication yet, Elival? Not sure about it. I have different doctors telling me different things. Help anyone? It's greatly appreciated!!

[mayray518]

welcome to the site. I have taken elavil for 5 years and it was the answer for my treatment. Side effects can vary but I started out at 50 and then weaned myself down. Good luck

[vm]

One of the best things you can do for yourself and your bladder is to read the Patient Handbook at this link: www.ic-network.com/handbook It is full of information about the disease, coping with it, treatments for it, etc. I have learned more about this disease from the handbook than I have from any doctor. It is empowering to really understand what is going on and what treatments are available to help people.

:welcome: to the ICN and I hope to see you around. There is hope for feeling better, OK? :kissing:

[Annie2]

Hi, Erin, and welcome to the ICN! You have received some excellent advice from mayray and VM. I just want to echo what VM (Kim) mentioned about carefully reading the online patient handbook. Learning all you can about this disease, tests used to diagnose it and treatment/med options would help you communicate with your physicians and make treatment decisions. I would also recommend a book that many of us have found to be an outstanding information resource. It is The Interstitial Cystitis Survival Guide by Robert Moldwin, MD. It is available here in the ICN Shop and also in bookstores and at Amazon. Some libraries also have this book available.

There are many different medications and treatment options available to IC patients. Elavil is just one of the meds on the list. Every individual responds a little differently to medications so what helps one patient may not be effective for another. It may take a bit of trial and error to find the med or combo of meds that is most effective for you. Let me reassure you that the vast majority of IC patients do find it and go on to live fairly normal lives.

I'd also recommend you immediately put yourself on the IC diet. You will find that in the patient handbook. The diet is a challenge but most of us find it is the best self-help tool we have and, though we have to give up many favorite foods, we do it because it works well to reduce our symptoms and pain.

I also feel compelled to make note of the fact you are in Concord, NH. My hubby was born and raised in the Lakes Region and much of his family still lives there. We travel "home" to NH as often as possible. We are much older than you. In fact, we have a daughter who is a couple of years older than you. My hubby is retiring Jan. 3rd and we are planning on moving back to NH for the summer and fall seasons but will spend winters in warmer climates. Another young person from NH (student at Plymouth State) joined us fairly recently. Hopefully she will see this thread and join us in saying :welcome:

We are not medical professionals, but we are glad to share our IC experiences. So feel free to post any questions you have and we'll do our best to answer them. We're all here to help one another.

Annie :flower:

[Imustpee]

Hello, and welcome to the board..Looks like you have already been given excellent advice. Keep working with your doctors to find what works best for you. Elmiron has been a miracle for me and it's all I take..I tried Notripilyne but I gained 10 pounds in one month...That is the one thing I didn't need...now I am trying to get rid of that..... :mad:

[greghh]

Elavil has greatly helped me. It has also been shown in a recent study in Germany to be highly effective and 70-90% of the people have a favorable response. It will make you sleepy at first, but stick with it a few weeks and drowsiness goes away. May give you the muches. Don't expect a miracle, but pain will go down and it helps you sleep.

[Katrina]

:hi:Erin! :welcome: to the boards!
Wow....I bet hourse ridding is difficult to the bladder. I sure hope you get the treatment that is best for you!!

You will find a lot of information and support here! Please keep us updated on how you are?

[work it]

:welcome: Elivil and Elmiron have both helped me. Downside on Elivil for me was that I was craving food mostly sweets alot and there for gained weight. I have recently stopped taking Elivil because this was a major issue for me. I hope all goes well for you.

[jeanniebug]

Hi Erin, and :welcome:! I also highly recommend reading through the patient handbook on this site..I learned sooo much from it when I was new. I was so overwhelmed by all the information different urologists were giving me, it was great to sit down and sort through some information at my own pace. I have been on Elavil for over 6 months. It helped my pain completely at first, for a week or so, but then it came back. I mostly take it to keep depression at bay, because I am one who has constant chronic pain. It really does help me to keep a positive outlook. However, there are many who've had alot of relief from IC symptoms with Elavil. I would also like to add that I have never gained weight from the Elavil. I got the munchies and was groggy the first few days, but it went away. Everyone is different in how they will respond to a medication. It took me a long time to try Elavil. I was scared of it, but now I have no side effects from it. It doesn't even make me sleepy anymore. If you are interested in suggestions for the IC diet, I recommend the book "A Taste of the Good Life"..a cookbook for IC, sold in the IC shop on this website. It has been the best purchase I ever made. It really helped me to think outside the box. I felt so limited as far as what I could eat when I was first diagnosed. If there is an ingredient in the cookbook that worsens my symptoms, I simply leave it out of the recipe if possible. You will probably want to talk to your urologist about finding out what foods trigger your symptoms first, before you start experimenting with recipes. I was never big on cooking before IC..but now I have alot of fun in the kitchen. It's become a creative outlet for me. I also reference my "IC Survival Guide" that Annie mentioned often. As she said, there are many treatment options available, and this book lists most of them in detail. It's a great read. The people on this site have been so helpful to me. I'm glad you found us! :grouphug:

[traceann]

Hi Erin, my name is Tracey and I am new too, I was just diagnosed in early November and started out on the Elmiron a couple weeks ago. Just recently (last Thursday) we added Vistaril to the mix. (I was started out on Ditropan in Sept for urethral spasms, was on just that for awile until a UTI --heh heh an actual UTI, kicked everything else into gear). So now me and my trio of meds faithfully follow the diet also. I just had a huge flare (my first biggie! The one that prompted the diagnosis and the Elmiron), and the diet, I am sure, has made a world of difference. Mostly right now at the present (I don't like to jinx myself in referencing the "fututre" --- I just take it day by day) my main symptom is frequency, ugh what an annoyance that is, but I'll take it over pain any day!

I haven't thought about the Elavil due to some side affects that I have had taking other drugs of it's type, so I am sticking with my 3 at the present, and so far so good. I have to say though, that it is definitely a combo of them and the diet. I too have had to be creative with my meals, and it can (surprisingly enough) be fun. Cooking is a huge hobby of mine and stress-reliever, making "homemade" stuff-- so I know what's in it, is rather a fun challnge. Funny how you never realize how much one depends on "instant"-type foods until most are big no-no's for you!

Well, anyway just wanted to add my 2 cents and say Welcome and Hello! You will find tons of info here and lots of helpful suggestions to anything you want to ask, and I mean ANYTHING! ;)

Take care and warm fuzzies to ya!
Tracey:)

[curlycue]

Welcome
You have come to a awsome plc.

[andcohen]

Welcome to the boards :welcome:
Andrea

[VickiB]

Hi Erin and welcome!

That's got to be hard having multiple doctors telling you different things! It's also a good reason to read the handbook (vm's link above) and educate yourself about IC, so you can better participate in your treatment options.

Though I no longer have horses, I do remember how impossible it was to ride when my bladder was throwing a fit. Hopefully with treatment, you'll be back in the saddle real soon!

Vicki

[Babs RN]

Welcome to the ICN Erin. You will find alot of varied experiences here that will enrich your own experience and assist you in explaining to your docs how you feel or allow your to come armed with info. That scares some of them to death, I know, I did it last week. Knowledge is power.



Hugs and :welcome: ,
Barb

[nss]

Welcome Erin, I take Elavil (or Endep as its known in Australia), it has been a god send for me. I would be lost without it.

Here you will find alot of support and lovely people.

Take care :welcome:

[Sarojini]

Hi Erin... sounds like you've gotten some great advice already, but I just wanted to :welcome: you to the boards. You've come to a great place... you'll find lots of information and support here.

I hope you can quickly find the treatments that are right for you!!

[MelissaJ]

Well I guess I will just say hi and :welcome: since everyone else seems to have given you excellent advise. I am also fairly new here and happen to be the same age as you (23). I've had IC my whole life and the only thing I could really add to what people have said is to read everything about IC you can get your hands on. Not just on the ic site, but do searches for medical journals, etc. ANything. And try everything when it comes to diet, pain, etc until you find out what is right for you and then stick to it.
And I hope you can get back on your horse soon.
:)