Good News/Bad News

[Margot62]

It has been two weeks since my cysto and the valium they prescribed me (can you say zombie!?) and today I had my two weeks post-cysto check up. There has been no improvement and today I was diagnosed with IC. I am sad that this is something I have to live with, but on the other hand, I am glad that I didn't have to wait years to be diagnosed. It's a bittersweet day.

So, now they are scheduling me for a hydro and they gave me a prescription for Elmiron. Can anyone chime in with some thoughts on both these things, from an extreme newbie point of view? I'd also like to ask if anyone else out there is extremely sensitive to drugs (even cough syrup is tough for me). If so, what is like taking Elmiron?

Any thoughts you have would be most appreciated...

Tears but courage,

Margot

[vm]

I'm glad you have a name for what is going on - but sorry it is IC. It's bittersweet, huh?

Are they doing the cysto w/ hydro to see if it helps your symptoms? I was curious since you already have a diagnosis.

The most common side effect with Elmiron seems to be nausea/upset stomach. If you are very sensitive to medication in general you may very well experience that. Some people combat that by taking it with a few crackers. Others find that the nausea is actually a reaction to the capsule and not the medication itself. They open the capsule, dump the medication into a glass of water, and then take it that way.

[Margot62]

Hi Kim

The doctor said this:

I've already had a cysto--they thought my bladder looked good. But since I have had no improvement, they thought they would do a hydro because he believes that makes some people feel better. Reading this site, though, I'm not so sure.

I am really worried. I am a tour guide and am scheduled to go on a two-week trip in less than two weeks. Should I do the hydro before? Should I do it all? My thought is to just ask for the DMSO-thingy since hydros seem to be so invasive and painful for a lot of people. What should I do? They aren't using the hydro to diagnose me---they already did a cysto.

I am really stressed right now, wondering what to do about work, etc. Are there any statistics that say what percentage of people feel better after a hydro? How soon would I be able to work?

Thing is, I'm in pain a lot, especially today since two days ago I had the nerve to be intimate with my husband?! Flare city. I am so confused right now and any help you can offer would be most appreciated.

[traceann]

Hi Margot!

I was wondering the same thing as Kim about the hydro, but then you answered the question, lol I know it's helped quite a few people, in relieving their symptoms. I haven't had one, so I have no first-hand info to throw your way. Donna our fearless Administrator is one who's been helped greatly with the procedure, I am sure she'll chime in on her experiences and bounce-back time.

As for Elmiron, it helped me out greatly. Kim pretty much covered the basics on it. For me the capsule gave me heartburn, ugh. But as soon as I started emptying the capsule into a bit of water and taking it that way, it disappeared.

I remember when I was first diagnosed, I ran from happy to have a name for it and a plan of action, then sad I had to deal with this and then angry, back to happy, etc. It was a rollercoaster of emotions to be sure. Hubby and I gave my bladder a break for a few months, with regard to penetration of any kind during sex. During that break, I made a lot of "Just for Him" nights, which at first he had a hard time accepting - just sitting back and accepting, but he got over it, hee hee. But it let him know that just because I couldn't even think about intercourse physically, it didn't mean that my brain didn't want to intimate! Then once we gently and gradually eased back into "regular" intercourse, slow and gently plus lots of lubrication were the way to go for us.

Have you tried the diet? I know for me it was a HUGE tool in managing my symptoms, and by doing the elimination diet, I found my worst triggers and discovered I could eat more than I thought I could.

I hope this helps a little bit, and don't worry, we've all been where your at, but with this site and all the lovely and wonderful people here, it makes it a bit easier to deal with everyday living with IC!!!! Keep your chin up - now that you are officially diagnosed, and started on medication, hopefully you are on your way to feeling better!

Hugs,
Tracey

[mary124]

Speaking from my own experience, (I've had about 10) I usually feel much better-) it takes me about 2 days maybe 3 at the most. I schedule my hydros on Thursdays this way I have Fridays to recover, plus the weekend. By Monday I am back to work. (of course I work in an office building but I am up and down all day long. also, everyone is different. its up to you. Good luck in your decision.

[vm]

I didn't feel better after my hydro (I didn't feel worse either after I'd recovered), but many people do get great relief for their symptoms.

If it was me and I was due to be on a trip as a tour guide for 2 weeks in 2 weeks - I'd wait to have that hydro. For sure if it was me.

[Margot62]

Thanks for your replies!

I also wanted to mention that I had a cat scan and a sonogram in the last few weeks as well, so I'm feeling confident that I've at least had a bunch of tests that rule out other things.

I have a question: I read recently that people who have both IC and PFD are considered more advanced in the disease? Have you heard that?

Also, what if this is just PFD? Isn't it hard to tell the difference between the two? So, is taking elmiron in my case really going to help? How do they distinguish between IC and PFD? What is the difference? Are they treated the same way? Why does a doctor determine that a patient is suffering from one and not the other or both? I'm really confused by all of this!

Also, I am going to try to do a vaginal valium suppository tonight and see if that helps since my bladder is spasming tonight. Anyone tried this before? I hate taking it orally since it makes me very tired and also feeling depressed and a bit crabby the next day.

I am truly so grateful for all of you. This is an amazing site and you all give so much hope, information and encouragement. Thank you so much....

[KristiV]

I don't think having both IC and PFD mean that you are more advanced. I could be wrong, I have read something like 70% of ICers have a form of PFD as well. You should ask your uro if you have it. I use a heating pad at night when my bladder feels like it is spasming. If it is really bad I use the adhesive ones that you can stick on your panties and wear all night long. You can get them at the IC shop or you can find some other brands at a Wal-Mart.

[dg2901]

I've had a hydro, and while it didnt help me, it didnt hurt me either. Having said that, unfortunately you're not going to know how you're going to feel afterwards, until, well, afterwards. If you're scheduled for a trip I think it would be wise to wait until you return before having it done.

Just my opinion.
Feel better soon!
Diana