confused newbie

[becca ann]

Hello! I have just recently been diagnosed with IC. I had the pleasure of having the KCL test last week. NOT fun at all. I have been diagnosed with endo several years ago. I am going to talk to my doctor this week about a treatment plan. I have a few questions if anyone wouldn't mind to help.
1. Should I stick with my GYN or go to a specalist
2. What do you guys think about Elmiron - (seems like it takes a long time to take effect and lots of side effects
3. Does anyone take any meds from the ICN shop and do they work
4. Does Prelief really work

Thanks Guys! :help:

Becca Ann

[Katrina]

:welcome: to the ICN! Sorry about your diagnosis but glad you found us:)
:hi: Becca Ann!
1. I think you should see a Urologist.
2. Elmiron is great but I don't think that you should suffer while you wait for it to work. It often takes a long time to work but with diagnosises happening earlier these days I am hearing quite a few exceptions to the Months and months of wait. Side effects are normally temporary or just related to the capsul....so if you have some taking it out of the capusl and drinking it works out. When Elmiron does work it can make a huge huge difference.
3. Yes, they are great alternative starting points.
4. Yes, although how is still not fully understood.

http://www.ic-network.com/handbook/ this is an essential link for everyone with IC. It is very informative on meds, living with IC, and self help....take a look!!!

http://www.ic-network.com/forum/showthread.php?t=7562 this is thread of pain relief the second page has attachments I believe the last attachment is the list of pain relief ideas.

http://www.ic-network.com/forum/showthread.php?t=11535 This is newbie kit from the oldies to the newbies

[Briza]

Hi Becca
1. Yes, see a specialist, but if your gyn, or any dr. seems more informed, understanding, etc., stick with who will work with you on a treatment that you are most comfortable with. I have seen and was diagnosed by a uro, but I now am under the care of my gyn for treatment of my IC.
2. I took Elmiron for 3 months. No side effects.
3. I just ordered a chair cushion from the ICN shop because I have a 6 hour drive coming up soon and being in the car for long periods of time causes me a lot of pain and irritation. Hoping it will do the trick. Other than that, haven't bought anything else.
4. Have not taken Prelief.

[rosesitty]

Hey Becca Ann -
1) I think you should work with a uro and a gyno. Everything is so close down there that it's hard to determine what's what. I've been going in for instills and nobody said a word about yeast. Went to my gyno to check out Pelvic Floor Dysfunction, he took one look and said I have a raging yeast infection. Think it can be important to see both.
2) If Elmiron works for you it's great. The key word is IF. Not everyone sees relief. Also, Katrina is right, it takes awhile to work, so your doc should develop a treatment plan that will help you in the short term. Regarding side effects - two hints 1) take the med out of the the capsule and 2) take it two hours after you eat instead of one hour before. I'm having to have my liver enzymes checked every three weeks, but I have a problem with that so the uro is being careful.
3) I ordered Dr. Moldwin's book. It is invaluable.
4) I HAVE Prelief, I just haven't tried it yet. I'm on the IC Diet, don't see a need to use it when all the food I'm consuming is bland.
Good luck - and welcome to the club!
Rose

[vm]

I'm another that has ZERO side effects from Elmiron. Had some nausea the first few days, but it went away.

[dawnmarieR]

I Am Reading What You Guys Are Saying About Elmiron. The Only Sides I Have Had Are Hair Loss Bad!!!!!!!!! I Cut Down To Two Times A Day Now. I Hear You Say Remove For Capsule? Why?? I Have Used It For Months And Nothing. I Would Suggest To You That You Do Alot Of Reading. I Use Preleif, And Loved It. I Would Also See A Uro, And Gyno. How Did You Not Know You Had A Yeast Infection?

[Katrina]

I know most of the side effects that are in the digestive tract are from the capsul....hair loss best plan is usually to stop elmiron and restart it after two weeks.

IC patients should pay close attention to the possibility of a yeast infection since they can pretty much cause you to flare up with multiple IC symptoms....burning especially.

[Babs RN]

Welcome to our bladder neck of the world! Sorry we had to meet this way, but this site is an awesome place for info, guidance, and most of all understanding. Never think any question is too small, we have all been newly diagnosed once, and the trial and error process seems like it takes forever. You have been great advice already and should you have questions that you would like answered on the boards, look for a newbie angel who would be happy to help.

Hugs :grouphug: and :welcome: ,
Barb

[dawnmarieR]

So Are You Saying Break It Open Then Do What With It?

[sister]

So Are You Saying Break It Open Then Do What With It?


Pour it into a glass of water. A lot of people get headaches from elmiron and dumping it out of capsule helps a lot of people with that issue, it helped me too.

I don't have issues with Elmiron, I did have to dump it out..but just at first..now it doesn't bother me.

You should see a gyno/uro it is a specialist in women's urology. That is the kind of Dr I see and he has a special interest in IC.

[mary124]

:welcome: Becca Ann!

I'm another one that doesn't have any side effects with Elmiron. Been taking it since 1997.

[becca ann]

Thank all of you guys for your great tips!!!! I Really appreciate it! Thanks for the support. I am really glad that I found this Site!!!

THANKS!

Becca Ann

[Kimchi]

Looks like your questions have been answered so I will just say welcome! :welcome:

[emilyrose197377]

:welcome: to the icn. I think you should see a uro and elmiron can take up to 6months to a year to work. They have gave you alot of good advice.

[dawnmarieR]

I Wanted To Say That Today I Broke That Pill Open And Poured It Into Water. I Also Wanted To Say, If You Are Having A Problem With Hair Loss Try Nioxion It Works Great.

[MelindaP]

What is Nioxion?? I would be interested in trying it!!

Thanks!

Melinda :)

[dawnmarieR]

Nioxion Is A Hair Supply, Shampoo, Cond, Gel ,spray,it Works Really Great For Thinning Hair, Or Hair That Is Falling Out. I Started To Use It Back In November. I Had Alot Of Hair Loss. You Do Have To Buy It At A Beauty Salon, Or Shop. It Is Not Sold In Like Target And Stuff. It Is A Little Pricey..and It Stinks, But I Love It.