please help, need direction, very depressed, cant take meds

[AshersMom]

i was diagnosed about 4 mos ago and my uro started instills every 4-6 weeks with dmso, heparine, lidocaine and an alkalizer i think sodium bicarbonate but i am really tired and cant remember right now :( anyways i had the third instill last week and i dont think they are really working....i have one more scheduled 5 weeks from now then we will re-evaluate but he said if it isnt working that he wants to do the botox treatments....but i read that you shouldnt get pregnant when on botox because they dont have any good studies about it yet so i am worried....i also cant take any of the prescrip meds for IC because i have a heart condition and all of the meds have contraindications for my heart.....i feel so hopeless right now.....i have been doing the IC diet since i was diagnosed and it doesnt seem like that is helping a whole lot either....but maybe it is because i was in a constant flare for 2 years before i was diagnosed.....i dunno i am just so depressed, i am only 23 and i feel like everything i wanted to do in life is going to be ruined now....i cant even be the fun mom i wanted to be for my 2 year old because mommy cant even take a flippin 10 minute walk :(:confused: i cry constantly about it and my relationship with my husband has suffered because of the lack of intimacy and im just so mad....and we wanted to be pregnant by now but i have put it off to try these instills and they arent even working and if i have the botox i wont be able to get pregnant without fear of it causing issues

sorry it is a book but this is tearing me apart

[blueberry72]

Hi Ashers Mom,

I'm so sorry you're having such a hard time. I too am having pain walking and am feeling sad about relationship effects and the prospect of becoming a parent while dealing with this. There are other types of instills out there such as Uracyst I believe, which can help rebuild the bladder wall. Maybe you could try those before the botox? I am hoping to start glucosamine HCl tablets soon too, these are supposed to help the bladder wall as well- a poster named MagicsMom has used these with pretty good results, they are OTC and pretty cheap- would these be OK to try with your pregnancy and heart condition? They are actually made to help with arthritis to rebuild the cartilage, but are sometimes helpful for patients with IC to help rebuild the bladder wall. Other more expensive OTC tablets include Desert Aloe vera pills and Cystoprotek- these might be OK for you to take as well. I would stick to the diet even if you think it isn't helping much. A heating pad really helps me when pain starts. Pelvic floor dysfunction might also be something to consider- maybe physical therapy would help. Someone here suggested squatting and I find that helps me. There are books with exercises like Heal Pelvic Pain and Ending Female Pain that some people use.

I hope you feel better and find some ways to cope that are compatible with your other health needs!

[ICNDonna]

There are other mixtures for instillations that could help you more. Some of our members are doing their own instillations with a mixture that contains lidocaine or marcaine, with heparin and sterile water. There are several different combinations being used that can help. Your doctor or the nurse should be able to teach you how to do them. Some ICers are really helped. I know you'll hear from many of them.

Warm healing thoughts,
Donna