Interstitial Cystitis

[SavGirl]

Hey.
I have never posted to one of these forums. But, I am just so frustrated with my own body. I have had the symptoms of IC since I was a little girl...but I would always go to the doctor, and they would brush it off...telling me to drink more cranberry juice, yada yada yada.

Well, I had three kidney infections in the last year, and I never realized I even had them until I got really sick, because the symptoms are so similar to what I have all of the time.

I was fine with all that; because I was used to it. To be honest, with 18 years of the pain of IC I had developed a pretty high pain tolerance.
Then, in May, I got married...and well; let's just say, nothing went as planned.

This is TMI, but oh my goodness; everything just hurt so much. One good thing, it did force me to go to the doctor...but really? It just seems so unfair.
My doctors have been great. I am taking Elmiron and I use estrogen cream for some of the symptoms.

A little more TMI; I waited for marriage...so I had no idea that it wasn't supposed to be that painful. So, it went on for a month without me seeing a physician.

And now, I am on meds that are really helping the symptoms...but how do you bring back the desire?
My husband has been so great about it. But, it's hard. Because, he is so afraid to hurt me...and honestly, I'm scared too...So, we make a pretty ridiculous pair.

I just don't know what to do. Anybody with any advice? It's nice to know that all of these symptoms have causes...but I want to feel like a normal newlywed.

[sadone]

Hi There,
I have been married for 22 years and thought that it was supposed to hurt all that time!
Talk about being silly. It was when I was recently diagnosed with IC, that it explained the pressure pain down there.
I know how you feel.
Anyhow, you have to try not to be tense and enjoy being with your husband even though you know you will be in some pain the day after.
You don't need to have complete penetration to enjoy your time together.
Perhaps, have a glass a wine and relax.
This is what I have been trying to do and it works. We may not be intimate as often as we used to, but at least we feel connected.
Remember the more nervous you are, the more your body will tense up, causing you more discomfort.
Good luck
Sadone

[karen10]

My doctor specializes in IC and she is trying a new thing that have worked great for people which is valium suppositories. They are just enough to relax the pelvic floor muscles so it doesn't hurt so much during those intimate moments with your husband! Ask around for them, many doctors don't know about it yet as they are new.

[chiyaki-chan]

Anyhow, you have to try not to be tense and enjoy being with your husband even though you know you will be in some pain the day after.

I completely agree, the more you can relax, the less pain you'll be in afterwards (and whilst it's happening).

Perhaps, have a glass a wine and relax.

Sadly, I think that this may be a bad idea, although I understand that it is ment with only the best intentions. When you drink ANY form of alcohol it makes your urine acidic which will cause 95% of the bacteria that cause IC/UTIs to grow at double their normal rate. Other things to AVOID are anything else that would acidify your urine, such as, Cranberry, Orange, Meats (especially red meats), any fatty foods, non-buffered Vit. C tablets, etc. Also the best thing that I know of to make you well again is Waterfall D-Mannose (yes, I use it too), a natural product made of rare sugars that causes the bacteria to be flushed from your body when you pee instead of attatching it's self to the mannose that is there naturally in your own body.

I really, really hope that this helps to get you well again and stay well there after.

Chiyaki.

[karen10]

I agree with the IC diet recommendations, however it's important to know that IC is NOT about bacteria infections. It has the same symptoms as UTI's, but the difference is that it's not caused by bacteria, as is a UTI. D' Mannose has shown to be very effective for infections, but NOT for IC specifically. It can be helpful in the sense that it can decrease the amt of UTI's and thus not irritate the bladder as much.

[chiyaki-chan]

This is true, the hyper sensitive bladder that you have as an IC sufferer can be very easily irritated. Even the slightest amount of the bacteria that are common causes of a UTI (even when usually non-detectable due to the minor amounts present) will cause irritation due to the toxins that they produce which will make things rather uncomfortable for you. The D-Mannose will help to keep these at the lowest possible levels which should make things that bit easier for you.

Chiyaki x

[karen10]

There are some things you can do that help. First go to the ic-network.com and reference their section on IC and intimacy. Then ask your doc or pharmacist about vaginal suppositories, they use valium. They aren't standard practice yet, they have to be compounded, but keeping asking, go do some research on it, because docs are prescribing them and they do work great! Otherwise, you can just insert regular valium and that works just as well. Another thing women do is take a safe IC pain med just prior to sex, as well as drink lots of water, using the bathroom before and after. The last thing is lots of foreplay (to relax) and lots of safe IC lubricant.

It's understandable you don't like it now! Who wants to knowingly do something that causes pain!?

Good luck to you!