bladder vs. pelvic floor pain

[yorkiemom]

Yesterday my husband drove me 100 miles to see a urogynecologist whom I have seen before to ask if he would refer me for PFT. This seemed like the next logical step for me after having exhausted just about every other available treatment option. After the exam, he said my pain is "all bladder," not pelvic floor and therefore, I would not be a good candidate for PFT. I've been told by about 8 uros that I don't have IC (I only go to the bathroom every 2-3 hours; cystos and hydros don't show anything), that my bladder is not that bad (although one thought I should have it removed) yet I have all the symptoms. No one seems to know what the problem is. I asked the doc what am I supposed to do? He recommended 1) Elmiron double dose for 9 months, 2) pursue reprogramming of my Interstim aggressively with the surgeon who installed it (I've had nothing but problems with it), and 3) try antibiotic therapy if I want to (this was my suggestion) but since most uros have debunked that treatment, he won't prescribe it.

In a lot of my reading, there is certainly the argument that PFD can be responsible for bladder malfunction and pain--it's which came first, the chicken or the egg? I have tried every treatment listed on this message board except the experimental ones (for which I didn't/couldn't participate) with no relief; I'm at my wits end.

My husband took me blubbering to a beautiful botanical garden where I spent the rest of the day wallowing in self-pity. Then last nite my next door neighbor who is a wonderful nurse told me to try a local infection specialist. She says he is talented, smart, and will certainly, if appropriate, prescribe long-term antibiotic therapy. He knows about broth cultures. Since I have a massive infection of one sort or another every month and I am practically housebound with the pain, she thinks I'm a perfect candidate to see an infection specialist. Today I got an appointment. Wish me luck--there has to be something out there for me. Without anyone to manage my medical care, I am constantly, frantically looking for "the Cure." There just has to be relief. I'll never stop looking. Thanks, as always, for listening.

[Nicole in ATL]

Sorry you have been feeling so bad and the PFT doesn't seem to be the right option.
But, it sounds like you have doctors who are willing to try new things. It's good to have some options and a treatment plan. That always makes me feel better, knowing there are still things i haven't done before that I could try.

I was treated by an infectious disease doc too, after my uro referred me (I had a broth culture done that showed bacteria). I had several positive regular urinalyses too. Infectious disease doc was nice, but didn't know much about IC. He knew alot about recurrent UTIs though and I have a history of those as well. I took antibiotics for a while and this seemed to help me and break the cycle of pain I was having.

I still have IC though. Others might say that I didn't take antibiotics for long enough (greater than 6 months). My bladder is small and scarred (from repeat infections or IC). I'm not sure how antibiotics are supposed to fix that. I had biopses of my bladder wall (after antibiotic tx) and no bacteria were found. I still get recurrent UTIs, so now use antibiotics intermittently.

Didn't realize how I am rambling on and on!! Sorry.
Good luck and take it easy!
Nicole

[blue]

Wow! How horrible not to have a diagnosis. At least, with a diagnosis, you know where to go from there. You have a starting point.

I hope this new doctor does you some good.

[kelly McC]

I am praying for you. I hope you get some answers soon.:pray:
Kelly

[ICNDonna]

If you're having frequent infections, that could be your primary problem. I'm glad you wil be seeing an infection control specialist. I hope this will be "the" answer for you.

Sending encouraging hugs,
Donna

[DanielleTC]

I am so sorry that you are suffering so much! I have had doctors tell me that I wasn't a good candidate for Pelvice Floor therapy too, but then I did it anyway. I can say that I have learned SO much, and while it may not be the ROOT cause of your pain, it may help you to be able to tolerate the pain or relieve some of it. I also know that the constant infections and/or lesions from the IC can cause "restrictions" or muscle knots in the pelvic floor. I have learned this from a great Physical Therapist who really wants me to understand the work we're doing.

So I guess what I'm saying is that if you think Physical therapy might help don't give up - keep persuing this route. It has been helpful for me. It hasn't "cured" me but it has helped. Other things that have been helping is being very careful about my diet, Elmiron, & Hydroxozine. I think everybody is so different, but you know your body best. I hope you are able to find the relief you need very soon!
Danielle

[Dani72]

Why don't you try that book Headache in the Pelvis, I beleive it has excercises in it to strenghten your pelvic floor. My uro wouldn't do the exam to tell me if I had it or not, but I think I do. So I am going to get that book and start helping myself. Just an idea.
Danielle

[yorkiemom]

Thank you, everyone, for your wonderful support. I may go the physical therapy route yet . . . right now I am working with a neuromuscular massage therapist who is finding that while I have no pain on my left side, he feels that it is 100% responsible for the pain on my right side, and also my bladder which is smack dab in the middle. He says that my psoase (sp?) muscle is so tight that when he presses it, pain streaks across to the trigger point on my lower right side. He says that chronically spasmed muscles can cause bladder inflammation--similar to a premise in "headache in the pelvis." Also, he is positive that my weak pelvic muscles are responsible for the myofascial pain in my neck & shoulders. When he presses my left side, stabbing pain shoots up into the right side of my neck (another trigger point) and I can't turn my head to the right when he does that. It is the most amazing thing I've ever experienced. And my myofascial migraines are diminishing. When I first saw him, I had to wear lidoderm pain patches every day; now I seldom use them. Also, I can use my arms a little more.

I have given some thought to traveling to California to attend the "headache in the pelvis" clinic--but will wait to see what the infectious disease doc says first. One day at a time . . . as long as I have a plan in the back of my mind, I feel like I have hope! I'm ruling them out, like successive hurdles!

[PatL]

I'm outraged when I read some of the terrible things some doctors say and do to us. I started out with a diagnosis from one of the premier medical centers in Chicago. I was told that my bladder capacity had "shrunk" to hold only 5 ounces of urine, and that my pain and urgency would always be around the 2-3 ounce point of filling. THIS WAS WHAT THE GREAT MINDS OF A REVERED HOSPITAL COULD COME UP WITH. But I was so happy to finally have a diagnosis, and so desperate for any kind of relief, that I allowed myself to be prodded, filled with chemicals, left in pain and talked into an Interstim (which I later had removed due to 1) the lousy thing did not work, and 2) they forget to let you know that it can cause electric shock and if the battery should crack, you're history. Going downtown to that hospital meant I had to stop every 5 minutes on my 15 minute way there, pull over, open the front and back doors on the passenger side to create my little outdoor port-a-potty, and slink down in utter pain and wait for it to pass so I could trickle out a little bloody urine. This is what some allopathic doctors call "helping?"

I've been on every medication we can name for IC and have had terrible reactions, sometimes even anaphylaxis from some of them. I've tried every diet, bought the IC cookbook, nothing made any difference, until I went to this group of urogynecologists out in Maywood, IL. Can we mention doctor's names--if so, she is Mary Pat Fitzgerald, M.D. a uro-gynie at Loyola University Medical Center. She proved to me that I don't have a shrunken bladder, and her specialty group totally believes in pelvic floor therapy. How unusual for an M.D. to want to send us somewhere the M.D. won't benefit financially. Anyhow, I started pelvic floor therapy. My first visit was an eye opener and besides relief, I learned more from the therapist, Rhonda Kotarinos, in a few months about the disease and what causes it, than I had in years and years of seeking relief from the pain, constant pressure, constant urination, constant exhaustion and sleeplessness, etc. Rhonda believes (and so do the doctors at Loyola) that IC's underlying pain and pressure to urinate is from some physical trauma that affects the nerves throughout the pelvic floor. We build up years and years of our pelvic floor kind of flinching or tightening in response to the pain, and that just causes an endless cycle of nerve pain and causes the bladder to react to create IC.

When I first started PFT, Rhonda said my pelvic floor was as hard as concrete. I can tell you the first several treatments were bearable only because I would stop first at the doctor's office and receive shots into the uterus and pelvis which contained painkillers so I could withstand the initial PFT. After about 6 visits, I was able to continue the therapy without painkillers and made a lot of progress. I could ride in a car again with my husband without begging him to pull over on some stretch of highway. I started drinking water more normally, which improved my regularity. Before I would take sips and spit it out, and was always dehydrated. I was starting to feel like a human being again and things looked good. I should say that before and during all of this, I kept working full-time, with some periods when I couldn't make it out the door.

Anyhow, I believe PFT is the answer and that it is the unwillingness of most physicians to consider a non-medical therapy as beneficial as their medicine or drugs.

A postscript: Because we spent thousands and thousands on the medical end, I've been forced to discontinue PFT. Rhonda charges $150/visit and often goes past the 1-hour appointment. Our insurance did reimburse about 60% of our costs, but recently my husband was laid off and our insurance is gone. I stopped going for PFT last year, though, because we had too many medical copays not covered by our insurance. My husband is only 52 but has leukemia and lymphoma--sounds bleak, but we are happier and laugh more than anyone we know.

Still, the PFT is the only thing that helped and I believe that when I can go back to Rhonda, I will have a permanent fix. She is known around the world and has people come to her for therapy from Europe, Japan and Australia. Her daughter will be joining her practice, and Rhonda is not only effective and empathetic, but can somehow find a way to fit you into her impossible schedule. I know everyone can't travel to Chicago, but you might telephone her for a referral in your area. That's important, because I briefly went to a therapist who told me she couldn't help me--duh.

Listen to your body and search out a really great pelvic floor therapist. You will be amazed--and there are no drug side effects, just results. I wish you the best in your recovery and you will recover. Don't give up.