Newly diagnosed

[Jacquelynn]

This is my first time ever posting antthing to a message board. Hope I do okay.

I was diagnosed with IC two weeks ago and I must say it is nice to finally have a name for this demon. I was starting to doubt myself and my sanity.

I started experiencing significant pelvic pain just after the birth of my third daughter 3 years ago January. I am at a stage in my life when I have everything I could ever ask for, a wonderful supportive husband, three beautiful girls and a terrific job.

Still, I feel cheated because I am unable to enjoy it all.

This diagnosis offers me hope though. I started on Elmiron about 3 days ago. I was very afraid to try it - worried about the side effects etc etc.

How much success have any of you had with this drug? I am curious to find out the level of pain relief you have experienced. I think my biggest fear right now is that I will never have a normal enjoyable sex life again.

Any insight would be helpful.

[liz2]

Welcome, I am sorry that you have IC. I was able to raise a family. I am sure you will get lots of ideas from these boards.

Hugs.


grouphug

[ICB]

Hello:

I'm so sorry that you are having such a tough time with IC and maybe Pelvic Floor Dysfucntion.

You mentioned Elmiron - which helps about 38% of IC sufferers. However, the goldstandard treatment for IC is usually a multi-modal (more than one) treatment. The most commonly prescribed drugs for IC are: Elmiron, Elavil, and Atarax. However, I suggest that you research IC a bit more and discuss these options with your doctor.

Elmiron can take from several months to about one year to work. About 3% of Elmiron gets to your bladder, so it may take a while for it to help rebuild the lining of your bladder and provide relief.

Another option (which can be taken in conjunction with Elmiron) is CystoProtek (www.algonot.com or call 1-800-254-6668 and ask for an informational package). CystoProtek may help to rebuild the lining of your bladder and it also helps reduce/inhibit inflammation - thus helping with frequency, urgency, and pain. With CystoProtek about 15% of the supplement gets to your bladder -in some patients they can see an improvement from 1 to 4 months. As with other IC treatments it does not work for everyone.

About 70% of all IC patients develop Pelvic Floor Dysfunction (PFD). It can be controlled in most IC patients with Biofeedback Therapy with Down-training.

Many IC patients have problems with sexual intercourse. There are many things that you can do to make it a less painful experience (at least until the medications start to work). Many IC patients are able to have a normal sex life once their medications kicks in and the bladder starts to heal.

A great source of comprehensive information is "The Interstitial Cystitis Survival Guide" by Dr. Robert Moldwin.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB

[ICNDonna]

Welcome to the IC Network. I'm also sorry that you have IC, but would like to share that my IC was diagnosed 29 years ago and I do live a normal life. It can take time to find the most effective treatment options for each individual, but most of us do find relief.

Elmiron can take up to six months or longer to be effective and doesn't help all IC patients, but some find it very helpful.

You'll want to learn as much as you can about IC and definitely put yourself on an IC diet --- you'll find information in our Patient Handbook at http://www.ic-network.com./handbook/

Sending warm healing thoughts,
Donna

[dyno]

I just wanted to add my welcome. If you have other questions we will all be here for you. hi

[Iris]

Hi and welcome to the boards and the IC family. I was diagnosed just under two years ago, and must say that with the right meds, and self care, and watching my diet, I am beginning to enjoy an almost normal lifestyle again. It all takes time, and we are all so different in our meds and finding out what works for us, but believe me, there is a light at the end of the tunnel. Pleased to help you in any way that I can. Welcoming hugs Iris. hi grouphug

[felineperson3]

hi Jacquelynn,

Sending you a warm Welcome! You are in "safe, caring hands" here. I have been reading the messages on the boards here for 8 or 9 months now and have just recently starting posting more frequently, but I can attest to this being a very caring, supportive group! Just ask whatever concerns you and there will be
someone come through for you that has had a similar experience to share with you. You're never alone in your struggle here.
Take care and may God bless you as you cope. angel

[October]

Hi Jacquelynn,

Welcome to the board. I have been taking Elmiron for one month now and I noticed improvement in my symptoms after two weeks - coincidence? I don't know. Anyway, I'm thankful. I'm also going for pelvic floor therapy which has been helping tremendously. I've always known that my muscles are weak but I don't like to exercise. I go to a physiotherapist who specializes in this area and in addition to the benefits of exercise, it's just nice to have contact with someone who cares about my well-being. I hope that you have success with the Elmiron but if not, there will be something else for you to try!

[Jacquelynn]

Thanks everyone for your warm thoughts. I am starting to feel better about the diagnosis. I find that the more I learn, the more I actually feel in control. (My URO says I have control issues?? - maybe he is right). Whatever it makes me feel better.

I am trying to deal with the diet changes, but I find it quite difficult to determine the best approach. I have eliminated most of the "bad" list foods and I guess I will just experiment with the rest.

I am so glad we have such easy access to so much information on the internet. It has been very helpful.

Is it common to have some relief of symptoms after the cysto?? I am not sure just what to attribute this improvement to - diet or the procedure, but I will enjoy it while it lasts. Does anyone ever get 100% relief from the pain??

Thank you again for all your kind words. I think this message board is a great idea.

[Arizonian]

Jacquellyn
I have been on Elmiron for a year and one-half and have not had any side effects. I would definitely recommend you give it a fair chance as it could work for you!

[Alexa]

Hi Jacquelynn, Welcome to the ICN

Some people notice a big improvement after a hydro...and get it on a regular basis because of this. Personally, I didn't receive any benefit from the hydro, aside from diagnosis, but everyone's different. You could see improvement because of a combination of it along with the diet...diet makes a huge difference for me. Whatever the case, I'm glad you're doing better! grouphug Elmiron helped me tremendously, it took a few months to kick in, but has literally given me my life back. I didn't have ANY side effects. I hope it helps you too! By the way, sex is possible, take care of your symptoms for now, but most ICers are able to enjoy a wonderful sex life. Elmiron helped me in that department, along with tons of astroglide and a very wonderful and understanding husband wink

Hugs,
Alexa

[Mimi-in-Chicagoland]

Pyridium plus helped with pain for me...and its not a narcotic...doesn't make me loopy. Its mild, but takes the burn off. Your uro should give you other drugs to make you comfortable. I'm glad the hydro gave you some relief now. The links on this site are wonderful for knowing what works and what to ask your doctor.