New to forums, pessimistic about instillations

[Mittens13 ICN Member Find all posts View Profile Close Mittens13]

Hi everyone

I have had IC for at least 8 years now, but I am new to the forum. I have carpal tunnel syndrome in both hands, so I can't post much.

Due to my hands, I am not going to list all of the things I have done to eliminate IC symptoms. I'll just say I am currently on an extremely limited IC diet to control pain, frequency, and urgency. I eat no processed food, additives, preservatives, or foods that I know hurt. I have tried almost everything else I have heard of, except for Botox, the new needle-in the-ankle electric thingie, and anything that is in clinical trials. I have been through all the tests, been through the gyn routine, everything.

Diagnoses:

Chronic Interstitial Cystitis
Vulgar Vestibulitis
Pelvic floor dysfunction
Possible endometriosis
Ovarian cysts
PMDD/Painful periods
IBS

Other diagnoses:
Sacroiliitis
Bulging discs at L4 and L5
Cubital and carpal tunnel syndrome bilateral
Bilateral chondromalacia, plantar fasciitis, and hyperpronation
Chronic daily migraines
Musculoskeletal pain in neck from car accident
Etc I can't remember all of it!
GERD


My primary symptom is pain, and it is severe. Without meds, I have level 8-10 pain in the vaginal/urethral area and in the pelvic region.

I had my first Elmiron bladder instillation last week, and really don't want to go back for another. It was so painful that I had a return of the level 9 pain and just laid in bed. I didn't sleep the night after the treatment. The pain did not go away for a whole 36 hours. Then, I had flares that kept me awake all week. A small amount of spice or food that would normally cause minimal or no pain caused agony for me this week.

I just don't see a reason to return to the uro other than to see if I have a UTI. I don't want to put up with 8 weeks of instillation agony for 1-2 levels of pain difference for 4-6 months. The math just doesn't add up. That, and when you take the placebo effect out of the Elmiron studies, the drug only helped like 15% of people. The odds just seem against me, and I don't want to put myself through 7 more weeks like this one just to get minor changes in pain relief (according to Elmiron clinical studies).

Can anyone fill me in on their own experiences? I'm slightly curious why, when I google Elmiron, I seem to come up with more positive forum threads than negative ones, even though the drug statistically only helps a select few.

If people have had awful experiences like mine, I need to hear it, so I don't feel like a giant baby.

Thanks for reading.

[hoping4acure ICN Member Find all posts View Profile Close hoping4acure]

First of all...Welcome! Secondly, don't ever think you are a big baby. This pain is real and everyone has their own tolerance to pain. When I was first DX'd I was always at a pain level 10 (+). I am really sorry to hear you are in such pain. I know how you feel. Yes, I would check to see if you have a UTI.

I did however, have success with the elmiron instills. I don't know about the placebo effect. My doctor had me bring in one of my elmiron pills from home and she would add lidocaine and bicarb to the mixture and install it. What helped me get through the first few instills was she put some lidocaine in me first, and I would lay still for about 10 minutes and then she would come back in and instill the mixture with MORE lidocain. This just might not be what works for you.

You have a lot going on besides IC. The endometriosis and the cyst don't help. I had both of those also. I am older...I had a hysterectomy when I was 35. As do I, have PFD. This alone can put into a vicious cycle. It stinks.

All of this I would imagine stresses you out. Which is my #1 cause of flares.

I can tell you this, I found what worked for me. I am confident you will find what works for you. You might have to go through a couple of doctors to find one that listens to you and fully understands IC and the other things that you have.

Sending healing thoughts and hugs.

-Louann

[Barbm ICN Member Find all posts View Profile Close Barbm]

Mittens13, It sounds like you have very severe IC. Look into cyclosporine. It is a pill. It definitely is not for everyone as it has some serious side effects. However, the results with severe IC have been amazing. Good luck! P.S. I agree with you on the frequent instills for minimal relief

[Mittens13 ICN Member Find all posts View Profile Close Mittens13]

Thanks!

Thanks guys!

Barb, I kind of suspected my IC was bad, but I never want to say so bc I have a list of conditions a mile long, and I frequently feel like a hypochondriac.

My dog takes cyclosporine for his allergies! I am familiar with the drug. I will mention it tomorrow.

Thanks, I don't know whether I am going to get the second instill. I am going to be brave and go to the appointment anyway, and talk to the doc. I will see if we can agree to keep the pain to a minimum.

THANK YOU SO MUCH!

[nanawaggs ICN Member Find all posts View Profile Close nanawaggs]

Best wishes for tomorrow's appt. Hope you find some answers for relief.

[Mittens13 ICN Member Find all posts View Profile Close Mittens13]

Thanks for the feedback! Going to try one more instill.

Hi everyone!

Thanks for reading and posting. I needed the support and feedback. I was so sure the doctor was going to insist on more instillations. (this is a new Uro for me).

Well, he was very kind and said he wasn't going to push the instills on me. I said I would be willing to try again if we could minimize the pain. We are going to try again in 2 weeks with a smaller catheter, and I am to come into the office on Pyridium and Lidocaine applied topically at the site of the urethral/vulvar pain.

If the next one doesn't work, We will move on to new treatments. He provides the transcutaneous tibial nerve stimulation treatment which is supposed to help frequency and urgency. Even though pain is my primary symptom, I could use help in those areas to reduce my medication load. If that doesn't work, I will talk to him about other possibilities.

I have already used up my Medicare prescription drug benefit for the year, can you believe that? Whoa!

Thanks again ladies, you were all a great help.

[hoping4acure ICN Member Find all posts View Profile Close hoping4acure]

Happy to hear you are doing better. The lidocaine really does help a lot. Good luck with everything. Oh yeah, I forgot to mention that about the catheters. They used an infant one on me.

Please keep us posted.