Went to Doctor

[mcbride]

Hello everyone. I posted a week or two ago. I had a lap in Sept 2004 to have endo removed from my ovary. Then in Oct began having symptoms of IC. Doctor put me on Elmiron. Began having severe pain, frequency almost everyday for last 2 months. Just went back to dr who is ob/gyn. He says we can put you on Lupron, Birth Control, etc to help this Endo pain. :bonk: Duh, I told him it is pain in the bladder area. Therefore, IC pain. I said I really don't feel like this is Endo pain right now. So, he prescribes Detrol LA for the frequency and says lets see if you are still feeling bad in the next couple of months and if you are not better he will refer me to a Uro. He says he could do a Cyst in the office, but it would be really painful. I felt good for about 5-6 days, now the pain is back. :toilet:

FYI - The Detrol LA has made a difference in the frequency.

Anyway, my question is do I wait a couple of months and then have him refer me to a uro?

:help:

Stephanie
NC

[work it]

Hello Stephanie,
I myself would go and see a uro before a couple of months. I always say peace of mind is better then not knowing. I am glad the Detrol is helping for frequency but if you are still having pain maybe the uro could give out more options. Good luck!

[Katrina]

Just to let you Stephanie many women find their IC to be highly effected by our hormones....and have been helped by hormonal treatments such as they do for endo.
Agreed, I would want to plan that uro visit NOW unfortunatly it can take a quite a while to see a uro and get all the tests done to diagnose IC....I would want the process started as soon as possible. Let us know what you deside and how things go! :grouphug:

[mcbride]

I called the ob/gyn yesterday afternoon and they referred me to a uro. I have an appt. tomorrow. Thanks for your feedback.

Stephanie ;)

[work it]

That is wonderful. Hope all goes well with the URO. keep us posted.

[theclownster]

I'm glad you got an appointment with your uro. It sounds like you need to get some help with additional meds. I too started my IC journey with Detrol LA - I now take five different meds - one of which is birth control (nonstop for three months at a time).

I wanted to mention that Elmiron was a huge trigger for my IC pain and discomfort. I was found to be someone who could not take the medication because it made me feel worse. I tried it on two separate occassions and the bad symptoms came on each time. My doc told me not to take it anymore. I just wanted to mention that as you post said that things got worse for you after starting the Elmiron.

Wishing you lots of luck with your uro!

Hugs~
Jennifer

[kadi]

I also take birth control pills, Necon1/35, continuously (no periods) which has helped very much with controlling the IC - less burning pain in bladder & urethra and no menstrual flares.

I also could not tolerate Elmiron. The two months I was on it were horrible. Started with an unpleasant "tickle" in my bladder, then the pain & frequency got steadily worse & worse. After I stopped the Elmiron, I had improvement in 2 weeks.

I am allergic to sulfa & there is a very small subset of sulfa-allergic patients who cannot tolerate Elmiron. Most sulfa-allergic patients are just fine with Elmiron (which is why this is not listed in the package insert or at the pharmacy), but according to the advice nurse at Ortho McNeil (Elmiron manufacturer) there is this small group.

Wishing you better days soon!

[Sarojini]

A belated :welcome: to the ICN!

I'm so glad you were given a uro appt. sooner than expected! I hope your doc is able to help you out -- please post and let us know how the appointment goes.

Also, you may want to read the patient handbook (http://www.ic-network.com/handbook) if you haven't already... there's tons of great info on various treatments there, and also a lot of information on self-help strategies that can really be useful during flares!

Good luck, and keep us updated!!!

[kelly McC]

good luck with you appointment hope you can get some answers.
huggs,
Kelly

[mcbride]

:woohoo: I think it went well. He seemed to know a lot about IC. He has scheduled an in office cystoscopy for Thursday - Dec 23rd next week. He prescribed Valium to take before the appt. My husband will be going with me. He also gave me Oxytrol patches to take in addition to the Detrol LA. He gave me samples of Prelief too and a lot of literature.

He said it is possible that there is Endometriosis inside the bladder. That is one of the reasons for the cyst. Has anyone ever had endo in bladder.

I am a little nervous, but mostly I just wanted to cry after the appt. because I felt good that something is getting done.

He also said if he sees IC, he can do an Instillation at the same time as the cyst.

He said he knows this is hard and I should see about support groups and I said I am already in one! :grouphug:

Thank you everyone. :kissing: Also, Thanks for this website, it has been a lifesaver

Stephanie
NC

[Babs RN]

Steph,
Kinda had a uro appt with ups and downs today too. Know that all of us with our varied experiences are here for you on good days or bad days.

Hugs and healing thoughts,

Barb :grouphug: