hi i'm new

[hazellin31]

Hey everyone. After months of reading and searching through this site, I'm finally introducing myself. I've been dealing with IC for the past 5 years - been through 3 urologists (I know many of you have been to way more!) and years of no answers. Dealt with the all the issues of IC for the past 3 years without seeing anyone after being totally frustrated with the last 2 urologists and have finally gone back to urologist #3. Unfortunately he tells me (and I quote) he's "not on the cutting edge with this" which is frustrating. I'm taking 12.5 mg of elavil (25 mg was making me way too loopy!) and detrol which I feel are both helping. I also took all the advice about diet and cut out the obvious stuff like caffeine, chocolate, coffee, alcohol, acidic stuff. I know that this question is probably really redundant, but I was wondering of any other meds anyone is taking that helps. I don't really have that much "pain" but do have urgency, frequency, and a general just inflammed feeling down there. I've been seeing a lot about cystaq but don't know much about it. Just wanted to say hello and thank everyone for all the posts. I've learned more in the past couple of months than I have in the past 5 years and everyone is so awesome and encouraging here. Thank you all so much!! :grouphug:

[broken_smile]

Hello Hazellin31,
I have had IC for 15 years I can tell you some of the drugs that I took that helped. Prosed DS, Ditropan, Urised, and Pyridum Plus. Prosed DS is great for inflammation, burning and pain. Ditropan was great for bladder spasms but the only draw back is your mouth is dry as card board and you can over heat in the summer. Urised is similar to Prosed DS but not as strong but works well for inflammation. Pyridum Plus is wonderful for pain, inflammation, and burning but I can't take it because I have a very sensitive stomach and it makes me vomit and get really nauseated. Alot of people tolerate it just fine. I used to take the Amitripyline but it caused my pulse rate to go to high so now I am on a sister drug to Amitripyline. The drug is Nortripyline and it has not made me very groggy or wake up feeling like I have a hangover. I also try to use a mild soap like Dove, no fabric softner, always wear white cotton panties because the cotton lets you breath and no colored underwear as the dyes can aggravate my IC. My IC has got to the point I need the antidepressant and really need muslce relaxers and pain meds but doctors really don't like to prescribe medications that are addictive. I promise you that I can't take nonsteriodal antinflammatory drugs such as Advil, Vioxx, Celebrex, Bextra or Torodal. They kill my stomach. I hope this helps.

Broken_Smile :welcome: :grouphug:

[Dixiefireball]

:hi: and :welcome: to the icn family i'm sorry you have ic but as you can tell you will get much support and love and understanding here.

have you found the website www.ic-network.com/handbook this is a wonderful and very helpful site. it has the IC diet there that has helped many people control there systoms.
it also has other things there like other treatments out there for i.c
I hope you find it as useful as i have and others has.
sending you much love and prayers
and
Happy Hoildays
Rhonda

[TexasHoney]

Hi, I am glad you found this website. There is a wealth of information here and some very nice, caring people. The moderators know quite a bit about this diseease and have been very helpful to this past year. I hope you find a treatment that helps you Happy hoildays and I hope you safe and happy new year.

[A.J.]

hello,
welcome to our community. hopefully you'll find useful information and feel comfortable sharing with us. I've found this board to be extremely supportive and helpful--and it's nice to be able to talk with others who experience the same things.

-Allison

[Katrina]

:welcome: to the boards
I found some help in getting a good antispasmodic medicine. http://www.ic-network.com/handbook/oral.html Check this link in the handbook and there is a good list of meds.... I recommend trying some Calcium when you and inbetween meals and see if that helps....also water with baking soda helps....Please keep in touch!
:grouphug:

[Cricketmk3]

The only drug I could add is Elmiron. A lot of us IC suffers take it with Elavil. Elmiron helps some by repairing the bladder wall but takes months to be effective.

[Alexa]

Hi Lin! Welcome to the ICN :) I responded to your PM this morning so I hope you get it!

I would imagine it's very frustrating to have a uro that admits he's not up to date on IC - can your family doctor recommend another urologist that's perhaps more familiar with IC?

That's great that you've started on the diet, that makes a huge difference for me as well. Personally it was Elmiron that most effectively treated my IC symptoms, but please keep in mind that IC is quite an individual disease, so what might help or affect one ICer, might not do the same for another. But Elmiron helped me tremendously so maybe you could discuss this as a treatment option with your doctor.

Good luck and happy holidays!

:grouphug:

[vm]

:welcome: Hazellin! Glad you introduced yourself! :)

Your symptoms sound soooooooooooooooo much like mine were. I take 25mg of Elavil at night, Detrol LA, Vistaril 25 mg 2 x a day, and Elmiron 100mg 3 x a day. If you read my story you can see how all the meds were added, etc.

I feel super these days, so don't give up hope for that. :)

[hazellin31]

Thanks everyone for your replies! I really appreciate it. I have been wanting to introduce more meds, but didn't know how to go about doing that. My uro basically gave me Elavil and Detrol and said he'd see me in a couple of months. I do feel better but I'm not completely satisfied yet - I think I could be even better with other meds like Elmiron. How do I ask for more meds? Also, should the whole IC be something I'm talking about with the gyno too? Because I feel like I've never fully clued her in on my problems - I want to make sure that besides the bladder issues, is there anything wrong in that dept. too! Thanks again everyone!!!

[vm]

Your doc may be like mine was and want to give some time in between adding meds. I think mine wanted to give each med some time to work --- so that I could be on a minimum of meds if possible. I think I had a month in between each med.

If I were in your shoes I would ask about Elmiron. Since your doc has been open about "not being on the cutting edge" he may welcome some information on Elmiron. You might copy off some info from the ICN and take it to him and ask if he'd be willing to let you try it.

[Sarojini]

Hi and :welcome: to the ICN! I definitely agree with Kim -- your doc may just want to give you some time between meds. The next time you go in, you may want to bring in some info about drugs like Elmiron and Atarax/Vistaril (an antihistamine that many ICers find helps lots with their symptoms). There is info on this site that you could print out and share with your doctor, and he may be willing to let you try one or both meds. Just be aware that Elmiron often takes a minimum of 6 months to really kick in, so it's a good thing you're on some other med that are helping in the meantime. Good luck, and i'm glad you finally decided to post :D

[VickiB]

Welcome to ICN hazelin31!

Everyone's given great advice. While I'd say my Uro isn't on the cutting edge with IC, he does seem willing to learn. I think that's the next best thing. My suggestion would be that you learn as much as you can about IC & the possible treatments. Obviously, you're already doing that, because you're here! This will enable you to take a productive role in conversations with your Uro when deciding treatments to try. Don't ever be afraid to initiate a converstaion on possible treatments with your doctor. You'd asked how? I'd just say something along the lines of "I've been reading that Elmiron is often used to treat IC, do you think this would be a useful medication for me to try?"

Wishing you a very merry Christmas!

Vicki

[traceann]

Hi! I wanted to add my welcome too, although it's a little belated! :)

My doc and I are learning together, really. He's my gyno, so he really didn't know too much about it at all! When this started I was given a very lacking list of the IC diet food-type items and a Rx for Elmiron. That's it. I found way more info here on the diet than I was provided with, so I follow it really closely,(just starting to add back in foods to see who my bladder likes, and who it doesn't!). But since then, (about 2 months ago), I have read and read and read, and I suggested the Vistaril get added into the mix. I just called his office told them I read about it, that I wanted to try it. He called me back, we exchanged notes, lol, and I now take 25 mgs at bedtime, in addition to my Ditropan (5mgs 3x's a day--that was my first med given) and my elmiron (100mgs 3x's a day).

So, I learned that all I had to do was just suggest it, backed up with my why's and wherefore's and it worked. I take 800mgs Motrin when needed, every 8 hours.That seems to work for me, I also have an Ultram RX (tramadol--not sure on the sp) as a just-in-case-the-motrin-isn't-working pain med. So, far haven't had to use it, I think it helps just knowing I have it! I also keep a supply of AZO Standard/Uristat around (OTC pyridium). When I go see him for my follow-up in Feb, I am going to ask for a RX of the Pyridium Plus, sounds like good stuff! lol

I aslo keep a nice big supply of the Thermacare heat patches for menstrual cramps around, great for daytime work or nighttime sleeping! And I have a great relationship with my heating pad, :) And a cold pack ready to go, should that be what my bladder/urethra wants at the time (very finicky). I recently bought some Tums to add to my kit for burning etc., in case there is no baking soda in sight. I take a tsp of baking soda in a big glass of water when I feel my urethra acting up (stinging burning spasming), and 8 times out of 10 it fits the bill and I feel better.

Well, that's just my routine that works for me, but as you can see, just from hanging out here for a couple of months, I already have a great self-help list!! Glad you posted, I did the same thing, I lurked awhile before I posted, and I am so glad I did, I have learned so much from all the people here, it's incredible!!!

Take care of yourself,
Tracey :)