Help!

[terrielynne1969]

I have been diagnosed with IC and Pelvic Floor dysfunction. I have had this diagnosis for 9 months now and really no relief. I take Elmiron 3x a day along with vaginal Valium up to 3 x a day and am going to physical therapy. I take vicodin for pain but find that it offers less and less relief as time goes by. I have extreme pain and pressure in my vaginal and rectal area along with pelvic pain and lower back pain. From my research I seem to have one of the leading doctors in the area of IC through Beaumont Hospital in MI. I am struggling with my daily activities, work, housework, relationships, etc. This has affected my quality of life and that of those around me. My poor husband has been patient with it but it definitely affects our relationship. I have changed my diet accordingly and am running out of hope for a future without pain. What am I missing or is this just one of those things in life that has to be accepted? I find that I am either in the bathroom or in bed the majority of time.

[Skynard]

I am so sorry you are suffering. I was diagnosed on July 10th. I have a hyper-sensitivity to most meds, so I am trying DH Aloe and Cystoprotek. I have had (2) DMSO Installations and (2) Marcaine Installations. The Marcaine installations gave me relief but the second one I had some weird reaction. Does your doctor suggest installations? Make sure if you do them, that you ask for pediatric cath, non-latex, lidocaine gel and take Pyridium before them. I know Elmiron (I can't take), takes time to work, so I would give it a little more time. In the meantime, I would look into Cystoprotek if you have not done so already. I am taking Percocet only as an "emergency" medication. Seems like when you take them too often, they do lose their effectiveness. Maybe you can alternate with another. I would also keep a diary if you don't already. I keep track of EVERYTHING. How many hours I slept, exactly what I ate, how I felt, stressers for the day, how many times you pee, how much water you are drinking, etc. I have taken this into the doctor and you won't believe how much it helps them. You might also want to talk to your doctor about Pain Clinics. Are you using a TENS unit? I can't live without mine. My IC is mainly pain, so I also use these 12 hr heat patches that stick to the outside of your undies and provides heat right where it hurts for 12-14 hrs. LOVE THEM. I am also trying accupuncture - tried Yoga, but my body just does not go that direction, but it does help with relaxation. I also do warm sitz baths with 1 cup epsom salt to settle things down. Right before bed, my husband heats up a warm cup of milk, using dry milk. (I know it sounds nasty, but I can't drink regular milk and you will not believe how much it relaxes me - plus it is made with love!!) Hope there is something here that can help you. Know you are not alone!

Wishing you well on your journey!

God Bless.

[terrielynne1969]

Thanks for your quick reply! It helps to know I'm not alone. I sometimes worry that this could be something worse because it doesn't sound from my doctors that it should be this painful. After looking through here, I at least know that this is very real and I am not alone. Can't take the pain anymore though! I have missed A LOT of work lately. I'm going to try the stick-on heating pads today, maybe that will offer some relief.
Thanks again!

[Skynard]

The heat patches I use are called BodiHeat. I find them at CVS or you can order them on line. I tried the thermacare and I got a chemical burn from the adhesive!!! These patches you put on the outside of your undies, so you won't have that happen. I found a place on-line called Medichest, that you can order them from. They are hard to find, but most pharmacies will order them for you.