Interstitial cystitis--Insurance won't cover Elmiron

Had a LAVH on the 5th, left one ovary. Dr. scoped my bladder and found that I have
Interstitial cystitis. I am in excruciating pain when I pee now since my surgery, am being prescribed pain pills for it, was told there was no cure for it. Dr. wanted me to take Elmiron, it is 500.00 for one month supply and said I would need it for 6 months or more. I am so upset...don't know what to do.

Stix, I never did use elmiron but was given Atarax, It did help a lot, you get really tired at first but you get used to it. It is and antihistamine. I also got really strict with my diet. I used a bladder numbing med for when the pain got bad.

take care
Mo

Mo thanks for the info. Doc called me in Ditropan and Pyridium last night, doesn't seem to help much but I have only taken one dose so far. This problem is making my hyst healing time doubled I feel like. Aggravated I had to have this but know it could be so much worse. Just ready to feel better. I ordered some books on IC off amazon, i also ordered Prelief...hope it helps. Thanks again!

the ditropan can take a bit to help but the pyridium should help right away. so maybe the pain is not all from the inside of your bladder? Thats why these days I get bladder pain but it isnt the inside of my bladder its the outside because I have my bowel stuck to it. Just keep it in mind. Usually the bladder numbing med is pretty instant if the pain is coming from the inside.

that why my URO knew it wasnt the inside of my bladder anymore that was causing my pain.

take care
mo

That makes good sense Mo. I am still peeing about 6 times an hour. Still have pain, but not as bad. Dr. said he wants to start me on "instillation treatments"..do you know what that consists of? He said he won't do them until my 4 week post op check. I read that caffeine and chocolate aggravate IC so am steering clear of it. Thank you so much for caring. You are really helping me a lot..felt alone with this problem.

Have you visited some of the IC websites (IC-Network and the IC Association) to learn more about IC and the various treatment options? They have a lot of information and people who are living with this condition.

A big thing to remember with IC is that we won't all have the same triggers and the same treatment won't work for all of us. Each treatment can also take time to be effective so we have to be patient--I really don't like that word!

Chocolate is not a trigger for me at all, though I don't eat excessive amounts of it. Caffeine is only a problem if I drink it all day long without also drinking water. Some people find anything tomato based is completely off limits, but that doesn't phase me at all.

My doctor chose to prescribe Hydroxyzine for me to help the mast cells inside the bladder to heal. After several months of treatment, I was able to discontinue the med and can manage without it as long as I am a bit careful. (My biggest trigger is not drinking enough water which is something that has been an issue for since my hysterectomy 10 years ago.)

Some people do feel the instillation treatments are very helpful so they might work for you. Each doctor can use a different "cocktail" in them so you will have to find out what yours plans to use.

Are you keeping a symptom diary? This could help you and your doctor determine your triggers, which meds are working/not working, and if the issue is solely IC.

in there!

Thanks Weiser, I will go look up those sites. I hope chocolate won't be bad for me either..cuz i LOVE it! I also like to drink 1 cup of coffee every morning. Haven't had either since I read it affects it. I will start a symptom diary today. Thank you so much for your input! It is greatly appreciated!

Stix,

I feel your pain. I've had Interstitial cystitis for years. I'd recommend getting a second opinion from a urologist who specializes in this. My cystitis ended up being caused by the fact that I have to self-cath (disability) and the catether causes bladder lining irritation. UTIs do the same thing - and it is possible you could have had a very low grade UTI and not known it - yet the cystitis was created.

My urologist (Mayo Clinic) put me on Trimethoprim - a low dose antibiotic that I take daily to keep the UTI away and let the bladder heal. Now I don't like taking antibiotics daily - but these have been worth it. No more pain, no more blood in the urine!

My $.02 - get a second opinion, ask about something like low dose antibiodics if it turns out you have small UTI, and above all, ASK, ASK, ASK. Don't take NO for an answer, I believe there is relief out there.

Check out the Interstitial Cystitis Network for more info.

Some folks have found that Prelief taken before eating helps.

Also, adjusting diet (spices, caffiene etc can make it worse) can help.

Hoping you find relief. Check out the ICN forum - great people there going through what you are.

Hugs! Kathy

Kathy thank you so much for all the info! They did check me for a UTI, it was negative. Also dr. did the cytoscope on my bladder and it was covered in lesions. He showed me a photo of it. I will check out the network you mentioned. I have ordered 2 books off amazon about it. Will be glad to learn more and get some self help before resorting to Elmiron. Thanks again sweety!!
Hugs!!

Choco-holic here too! Can't do caffiene with the IC - but found a high antioxidant, healthy caffiene free chocolate that I love!