Frustrated---not your usual IC patient

[NewBladder]

Hi everyone,

I just read a post I wrote 2 years ago and remember how much pain I was in when I was pregnant with my second child.

Here's my story in a nutshell:
I'm 31, mother of 2 (4 yrs and 2 yrs). I was diagnosed with IC in 2005 via the potassium test and I was also a few weeks pregnant with my first child, unbeknownst to me. I was put on Elmiron orally then stopped taking it in my third trimester and got it injected into my bladder. Throughout my pregnancy I had some urethral burning but the bladder pain seemed to stay away.

Fast forward to 2008. Severe, debilitating pain when pregnant with my second child. I suspected that I did not have IC but something else because the Elmiron did nothing.

Now, it is December 2010. I had a cystoscopy and laparoscopy at the end of October because I had to go to the ER in August for SEVERE pelvic pain. They did a pelvic exam but the doctor told me I had to have to have surgery to find out the cause of the pain. Endometriosis was suspected.

I had my surgery and my bladder was cracked and read and horribly in pain. So I have IC.

My reason for doubting IC is that I do NOT have frequency OR urgency! I only have pelvic pain and vulvar pain. I am hoping to find someone who has these symptoms as well...I have literally NO urgency or frequency unless I drink a lot of water!

I started the Elmiron at the end of November and my urogynecologist told me it takes 6 months to fully kick in. I also take Acidophilus, Amitryptiline and Zoloft for anxiety/depression. I'm on birth control as well.

I'm in day 3 of a major flare and it's only getting worse. I never did the IC diet before but my doctor said that even if I don't FEEL a flare, acidic foods can still damage my bladder.

I am unable to exercise at all, even going for a walk can bite me in the butt later on. I love to run and work out but I get terrible pain.

Right now I'm in the worst pain I've had in months! My vaginal area is on fire, my bladder is on fire and I have no clue what to do. The only thing I can think of is sexual activity last week and a ton of chocolate over Christmas weekend. It's really disheartening.

I have accepted my diagnosis (grudgingly) and am trying to figure out how I can just be normal. I wait tables and have been unable to work as much as I'd like or need because of the pain.

Thoughts? Advice? I'd love to e-mail with anyone who can offer some hope, some solution. I just ordered Cystoprotek and Prelief and am going to order some supplements on Evenbetternow.com.

I am just seeking support. Please, anyone. I feel helpless.

Thx,
Becky

31 years old, mother of 2
Diagnosed November 30, 2010
Elmiron 400mg a day (taken at night all at once)
Amitriptyline 30mg a day (taken at night all at once)
starting Cystoprotek this week

[VickiB]

Hi Becky, Welcome back to the ICN! -But, so sorry you had to come back!

You're not too unusual. IC seems to present in any number/ combination of symptoms and I'm pretty sure I've read others stating they didn't experience the frequency or urgency.

It's good that you're looking into the IC diet. That one change made a huge difference for me! Hopefully you'll be among those for whom Elmiron works wonders too.

I think a lot of us here know that feeling of helplessness you mention. But hang in there! Most of us do find a treatment and/or self-help strategies that make life with IC better!

Vicki

[Linda May]

Ic

Has the urologist suggested DMSO treatments or rescue treatments to you?
I am on DMSO and at my third instil I started feeling much better. There are numerous treatments for IC you just need to find the one that works for you. All icers are different and it sometimes can be alot of trial and error. One thing is for sure make sure you have a very good urologist that really knows about IC and that he is sympathatic to this horrible disease. Also stick with the IC diet because your bladder is extremely irrtated.

[ICNDonna]

It could very easily be the chocolate you ate over Christmas that got to you. If that's the case, you should feel better within a week or so if you stick with the IC diet.

I think it would be a good idea to talk to your doctor before ordering supplements; they don't always interact well with medications.

Warm hugs,
Donna

[NewBladder]

thank you

thank you all so much for your words of comfort. I'm feeling slightly better today and my Cystoprotek FINALLY came so I started that today. It's hard because I wait tables part-time and it is brutal on the body.

I do not mean to sound judgmental, but it seems many people on this site are treating symptoms instead of trying to rebuild their bladder lining? Isn't Elmiron supposed to do that? I am surprised by how many people are not on it. Or is this more of a treat the symptoms disorder? I just do not want to have to do these band-aid treatments...I want to strengthen my bladder lining. I want to run, exercise, do jumping jacks without pain! Is that possible????

[VickiB]

it seems many people on this site are treating symptoms instead of trying to rebuild their bladder lining? Isn't Elmiron supposed to do that?

I'm not sure if Elmiron rebuilds the bladder lining. I am under the impression that it sort of 'coats' the bladder. But then perhaps in a round-about way that in itself provides protection which can allow the bladder lining to rebuild? Thing is, Elmiron doesn't work for everyone and even for those who do find improvement it seems common that if they stop they go right back to square one.

I can only speak for myself, but at this point there is no known cure so all I feel I can really do is try to avoid triggering a flare and then treat the symptoms when they occur. This has been working well for me. 95% of the time my symptoms are now so mild I barely notice them.

I want to run, exercise, do jumping jacks without pain! Is that possible????

There's no telling what anyone's IC future holds. Most do get better, but how better seems to vary. I can do all of those things without pain as long as I'm not in a flare at the time.

[KarenAnne]

Hang in there! Most of us do get well & lead normal lives on the proper treatment plan. It is trial & error because we all present so differently. (I have urg., freq., & pain) There are hundreds of diseases that are kept under control with meds, but also have no cure. You can work with your urologist to find the best meds for you.(hydroxyzine, tricyclic antidepressants, ssri's, bladder analgesics like pyridium & prosed, lyrica, bladder instillations, etc.) Physical therapy for the pelvic floor has been proven in studies to help with pain & other IC symptoms. It has relieved most of my pain, along with the IC diet as described on this website. It may take weeks for the bladder to settle down after cutting out irritating foods & beverages. I feel so bad for you that you are feeling so poorly. I hope you can get on a good treatment plan soon that works for you! Feel better.