Can't go out at all anymore??

[alycat]

It's been a while since I posted, so here's a quick view of my IC:

Developed in Senior High, with it getting worse every year since, about 4 years. I've tried almost everything; elmiron, detrol, DMSO, hydrodistension, narcotics, neurontin, TENS. Pretty much the only thing I haven't been able to try is true pelvic therapy, though I start that next week.

The last three months have been, well, hellish. Every time I try to leave the house, even for just a quick outing, my bladder goes nuts within an hour. Frequency, urgency, extreme pain to the point where I'm afraid I'll black out. None of the narcotic pain killers even touch it. Heated baths used to help, but not much at all anymore. Even lying down hurts; I can't lay on my stomach anymore, and only for a while on either side. Doctors are pretty sure I have some kind of anxiety problem. Though no matter how much I deep breathe, meditate, etc, I can feel relaxed where I am, but the pain will still hit anyways.

Added to this is a recent emergence of low grade fevers, chills, and dizziness. I went to the doctor today, and he thought it might just be "from being sick for so long," something about Interfurons in my system. Said I just need to get the pain under control. Easier said than done.

My new uro is awesome, thankfully. I'm waiting to see what the PT says, but I will be getting after her again. Though I'm not sure what we try next. I seem to be quickly running down the list of conventional treatments, and only getting worse. I'm only 21, so this is super frustrating for me at this point because I can't hold a job, can barely manage school (I have to go almost fully online), and am an emotional wreck most of the time.

So I guess what I'm asking the IC community is, does it ever end? I know there are a few treatments to try still (And I am having full blood workups done, pretty much every test there is to make sure something else isn't going on. I won't know the results for a couple days), but I know I'm getting to the experimental side of things now.

Some days, I wish they could just rip the danged thing out and give me a new one.

[ICNDonna]

I hope the PT helps. I noticed you are wanting to try a TENS --- I suggest you ask your physical therapist for a recommendation. I'm assuming you are following an IC diet faithfully and drinking enough water.

Sending healing thoughts,
Donna

[NancyB]

Ulcers and Instill Treatments

Dear Alycat -

I am so sorry you are going through such a terrible time.

You might want to talk to your uro about the likelihood that you might have some hunner's ulcers that could benefit from being lasered off. In addition, you might also want to talk to him about doing some instillations at home. The following information may be helpful:

I read some of Lee Read's posts about her at home instill Treatment Regimen for IC Relief and thought it might help you. Perhaps you would want to try it. Her original regimen was the following:

"... I instilled 8cc of 2% Lidocaine, 4cc Sterile water, 3cc Sodium Bicarbonate mixed with 1 Elmirion capsule. I did this 3 times a day for 3 months then 2 times a day for 3 months then 1 once a day for 6 months total 1 year. I haven't taken anything since July and feel great. I had a real bad case of IC according to DR Parsons 50+ urinations a day, Hunners ulcers, lots of pain."

Dr. Parsons is a noted IC urologist at the University of California San Diego.

Hope this information is helpful to you.

NancyB

[alycat]

Thank you guys for the support.

I have considered doing home instills. I don't think I have Hunner's though, last December I had a hydrodistension done, and my bladder looked perfect, apparently. Though that has been a year, perhaps it's time to do it again.


It's also becoming quite apparent that I've developed a severe anxiety disorder to go along with it; tried to do a job interview today, and boy was I in a load of pain and stress. Now I just feel like falling asleep and never getting back up.

[Linda May]

Ic

I hope and pray that you and your new uro will find the right treatment for you, have you tried the rescue treatments? Its a different kind of mixture than regular dmso. I was just wondering because you did'nt mention rescue treatments. Hopefully the researches will find other alternatives for IC and they work for everyone thus taking the guessing game out for all of us.

[Sour]

Hi there,

I'm actually in a similar way to you, Bladder looks normal, can't go out. Lying down helps but not always. Lyrica is the only thing thats helped so far but it stopped working. For others though, it works well. I haven't tried tens, could be worth a shot. Does you bladder fill to normal capacity? I don't go out either and sometimes after sitting up for only a few minutes, the burning just gets worse. Wish I knew why. Well your not alone, and hoe you find something that helps. Give the tens a whirl, you never know.

[alycat]

I have asked my old uros many times about rescue instills. Neither one would prescribe them and said they didn't do them. I have yet to ask the new uro, but I was waiting for PT first, which is tomorrow.

I'm taking my tens unit in tomorrow to see what the PT thinks and to make sure I'm using it correctly. I've actually felt pretty good the last couple days, I even managed to go out to a friend's house last night for a few hours for a game of dungeons and dragons; I almost left, but thankfully they had a good heating pad that got me through a bit of a flare.

I seem to go through cycles. Even though I'm on continuous birth control, I still tend to get worse during the time I would be on a hormone high. Has anyone else experienced this as well?

[Jereme]

I'm sorry you are having a rough time. Anxiety definitely can make things worse. Have you sought treatment for the anxiety? Ever tried Lyrica? It can help with pain and also is used off label for general anxiety with good results. Oh yes, this condition definitely can wax and wane. It's one of the more frustrating aspects of the condition. Good luck with PT. It will most likely help you. Many recent studies show PT can improve symptoms in many. However, you'll also likely need to get your anxiety in good control too since anxiety definitely can cause tense muscles which increase pain as well as frequency which increase anxiety which cause tense muscles which increase pain...etc. It's a cycle that needs to be broken. Good luck.

[bob04951]

Anxiety about going out definitely adds to the feeling. Maybe you can have a travel heating pad or one of those microwaveable things and just keep it in your car. Knowing you have it with you may ease your mind a bit. Jill, wife of Bob

[alycat]

Thank you everyone for your support.

I had my first pelvic therapy session with my new PT, and my God was she a blessing! She's treated many IC patients over the years, so just having someone who understood the symptoms was amazing.

She is going to do some real tests, but on the first meeting we just discussed my history, and she showed me a couple quick tricks. One of which being the use of a wedge pillow to lift my hips up. I immediately felt relief! She said it's something she recommends all IC patients do, it helps take the pressure off the pelvic muscles. I went out and got a wedge pillow and have started using it alongside the TENS unit, which she taught me how to use properly (She was so overjoyed that I had one; she has trouble getting them for IC patients since within Kaiser it's not approved for "visceral" therapy. I cheated the system a little with the help of the pain management clinic and asked for it for "back pain"). She also taught me a wonderful massage to do in that position, where you "scoop" the muscle towards your head, helping to pull it back from being tight. Just those two methods alone got me through a doctor's appointment without pain, which is amazing!

My doctor's and I think that the neurontin may have been causing some of the anxiety; I have been slowly titrating down off of it (what a terrible med to withdraw from; migraine from hell today because of it), and already I've been seeing an improvement in my anxiety. I felt very little bladder pain today, which I've had for a couple days now. I'm hoping I'm coming back around the corner!

[Jamey]

I have a major problem with belly pain. I've been dx'ed with endometriosis and ovarian cysts. Having both uro and gyno probs I have a really hard time getting things under control sometimes. I can't tell which pain is which because they're in the same area. If Iwere you I'd go to a good gyno and see if they can find something also.

[alycat]

I've actually been checked twice for endo, clean both times, and yes I've had one cyst, not on the ovary but on the fallopian tube, and yes those things hurt like hell >_<. Thankfully I know what they feel like now, and a lot of the pain I have now tends to me muscular feeling, like a rubber band stretched wrong. That's why I'm thinking PT may be best for me.

[Jamey]

I've heard good things about pt and pelvic floor therapy but I've never tried either. Tramadol norco and a heating pad are what I always end up relying on. Let me know how it works for you.

[alycat]

I managed to go out yesterday! Mom and I went shopping for new clothing (I may have a new job), and I managed 2 hours without an anxiety attack or any real major pain. Yes I was sore by the end, but not nearly as bad as before.

We're actually thinking that perhaps the neurontin was causing my severe anxiety problems. Ever since titrating down my anxiety has been much lower.

[bjcov]

Glad to see that you've had some good days lately. Hoping your on the road to recovery!