I just wanted to share my story.

[lisathebrock]

Hi all, I am researching interstitial cystitis and found this most excellent site. I have been dealing with this for five years, and have had so much medical red tape to wade through just to get to this point. Most of my life I have had pelvic pain and discomfort, but after my kids were born things went bad fast. They had me on lupron injections and even had me see a psychologist ( suggested it was in my head..) untill I finally got into a urologist who did a scope. He found the hunters ulcers and my bladder walls are very stiff. Every six months I would get dialted and have chemicals instilled (chlorpactin). It would keep me symptom free for a few months and then slowly things would start to build back up again. This last time I had a cystocele repair on top of the distention and instillation but it went horribly wrong and the back wall of my bladder ulcerated. I have been on bed rest and out of commision now since March. I am on Elmiron, ditropan, pyridine and vicodin, tramadol and ibioprophen. Its been rough. Never have cystoscopy while on Elmiron. I am now seeking support and trying to figure out how to live with this condition. It has been difficult with no support.

[ICLori]

I'm so sorry you've been through such an awful time of it - I hope so much you will get better soon.

Welcome, there is so much wisdom and support here, I know the other ladies will write posts with great advice for you!

Have you tried the IC diet, staying away from foods and so forth that irritate your bladder? Some Ic'ers have found that helps them a great deal.

Blessings,
Lori

[Dixiefireball]

:hi: Lisa and :welcome: to the ICN family I'm sorry you are suffering so. I do know bad those hunner uclers get. I too have them very badly. to be honest I have more hunners then I do IC. I have to have them removed at least once every six months or i end up bedridden. The last time I had it done was in Feb of this year trust me i can tell its getting time to have them removed again.
I've had them cut and burned, but since the back side of my bladder has been cut on so much they can only burn them off now. My bladder is so thin you can see my bowels threw the back side of it. So I know what your talking about.
I do the heparin installments at home that has been very helpful to me. I also use a pain patch 50mg, perocets 10.325 for break threw pain, klonopin one mg at night to help me rest.
I also get a lot of real UTI's which makes dealing with this disease more painful.
Know we are here for you. We do understand and care.
don't never give up their is hope.

sending you hugs and prayers
Rhonda

P.S
I also find the IC diet helpful I have figure it out enough to know my trigger points and what I can eat. Everyone diet is diff.
you may also find the handbook handy www.ic-network.com/handbook you can also take a look at the diet their if you don't already do that.

[vm]

Oh wow.... You've been through hell, huh? :( I'm really glad you found this site - I think you'll find the support to be absolutely invaluable. It makes SUCH a difference to not feel so alone; to be able to talk to other people who have been where you are and understand as a non-ICer could not.

Please keep posting - we're happy you're here. :)

[sandramac]

:welcome: Im: Glad you found us! Hope things improve for you ! Hugs Sandra :cat: :cat: :cat: