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Puppybreath
05-28-2010, 11:43 AM
I was finally diagnosed after lots of antibiotics and incorrect diagnoses of kidney stones, UTIs, irritable bowel, la, la, la.
I finally felt like I had an obstruction and found a urologist who correctly diagnosed me when he saw glomerulations (sp?) after a cystoscopy.

I did the whole program: DMSO installations, urinary frequency medications (which made me pee more and increased my thirst and constipation, all of which made me pee more frequently...kind of like the cure was worse than the disease).

I do think that the cystoscopies gave me the greatest relief because they expanded my bladder. I always felt better afterward. All this was complicated by a kink in my urethra, which made catheterizations quite painful.

I got hold of David Wise' book "Headache in the Pelvis." I started to doing the exercises, including external and internal trigger points.

My massage therapist, a trigger point specialist, asked me what I had been doing. He had noticed that my lumbar spine was relaxed and flat against the table. I told him and he said "Keep doing whatever you are doing!"

I went out to do the Stanford Protocol at David Wise's place in Sonoma. He had workded with a Stanford urologist to develop his own program based on trigger points and relaxation. Attendance required a consult with a urologist and had built a huge comfortable house to do workshops in on a property he owned.

He had an incredible physical therapist, Tim Sawyer, who did internal and external trigger point mapping. His wife Sara taught us how to use the Theracane and do stretches of the most important pelvic muscles. David did relaxation tapes and taught us about relaxation.

I do think that when you have chronic pain your nervous system gets stuck in fight or flight. Your nervous system is like a car stuck in 5th gear but the clutch is not engaged. At least that's how it was for me.

I was a psychologist with when I was diagnosed. Sometimes I would have to run down the hall to use the bathroom in the middle of sessions. After the Wise workshop I researched all kinds of relaxation and energy work to find out what might work best to help me relax. I went to every seminar I could, both medical and alternative.

It all works if I do the stretches, go to massage therapy (which is really stretches and trigger point therapy based on Aaron Mattes' program of physical therapy) and follow the Headache in the Pelvis book.

I stopped working 2.5 years ago when I tore up the cartilage in my right hip in a boating accident. I was diagnosed with fibromyalgia 20 years ago and the medications still cause me to be thirsty, but nothing like I was on the urological drugs.

Everyone has to find their own way. This one worked for me. If you are searching it might be worth a try.

I am happy to talk with you about it and share anything I know.
Please don't hesitate to write me if you have questions.

Beth and Augie, the wonder dog.

statesboro
05-29-2010, 07:21 AM
I will let you know that I just read your thread. Of course, I did notice you have been a member on here since 2003.(although only 17 posts) OK. I did get the impression that you are not on any medication for your IC now. Oh! I don't know what all you did, but it seems to have done some good for you. That is good to know. I do know some medications have been known to cause a dry mouth, but I don't see many people posting about it. OK. I have not looked under the Dry Eyes/Dry Mouth section. Anyhow, I will let that be all now.

Puppybreath
05-29-2010, 09:49 AM
I did not find a lot of use in the meds. I tried everything that was suggested and found that trigger point massage worked the best for me.
I think if you have a good doctor that you like you are in good shape.
Because I was dealing with depression and fibromyalgia I was on antidepressants since 1993, which does help pain. I thought I could not live without all the drugs. The DMSO did help until I found other ways to manage. In my case it was much more pelvic floor dysfunction. That doesn't mean I didn't have IC. They saw the glomerulations on my cystoscopies, but the side effects of the urinary frequency drugs were killer.
I found that I need weekly trigger point massage, relaxation and meditation to calm my body down. It keeps me focused on taking care of myself.
I think any doctor that recommends meds for relaxation is on the right track because I do feel that my nervous system is in overdrive and it really helps to calm it down. Antidpressants reduce pain. Massage lengthens muscles and helps the mind and body. I listen to Bellaruth Naperstak's tapes. She is a nationally known therapist and her tapes for resilience are being used by the US military to help soldiers in Iraq. She has CDs on pain, self-confidence and fibromyalgia.
What is right for me may not work for you.
You need to tune in to yourself. If I do the muscle stretches and releases in the "Headache in the Pelvis" book by David Wise, I can keep my muscles more relaxed. I am also a big fan of my whirlpool tub (no bubble baths!) I like being able to do things for myself on a daily basis if I need to.
If I have more burning and spasm I will go back to medication, but for now I prefer more organic ways. I do take muscle relaxants as well.
I am happy to share what I have learned after all these years.
Beth

kadi
05-29-2010, 10:47 AM
I use the Healthful Sleep cd by Bellaruth Naparstek. I've never heard the end of it because I've fallen asleep by then every time.

Snowden1
05-31-2010, 07:41 PM
Beth,
Did you have severe pelvic pain or was yours more the frequency/urgency? Also, did they ever find blood in your urine cultures? I am glad you have found relief. Are you abl to eat more foods too?

ICNDonna
06-01-2010, 01:07 AM
Teresa, your doctor should be able to tell you if you have pelvic floor dysfunction --- and can refer you to a physical therapist. If you scroll to the top of this page and click on "Professionals" you can see if there's a therapist near you.

Donna

Snowden1
06-01-2010, 03:08 PM
Thanks Donna, I have been to physical therapy last year and it is recommended this year too. The problem is I am in so much pain I can't drive the hour and a half to get there. The last time I attempted this I was in tears when I arrived at the office. I don't have family and all my friends have moved or are moving soon. I am also moving soon from MI to VA. I have an apt. with Dr. Evans in July. I hope he can help me because I have tried almost everything. I react badly to most medications. I did the Uracyst study here in MI. I also do home instils that are not really providing the relief they did at first. I don't understand why. I have blood in my urine and severe pelvic pain. I don't know that physical therapy alone can help this. I also did trigger point injections in the vagina for pelvic floor and ended up in ER. I just can't stop the daily pain. So, if I sound desperate, it is because I am. I will look into possible PT's in VA thank you, for the suggestions. My husband is in the Coast Guard and will not be able to take me to appointments. He and everyone else is busy trying to get the oil off the Gulf coast under control.

maryla
06-02-2010, 04:22 AM
Teresa,

I cannot imagine the stress you must be going through moving to a new state. I know the stress of moving across town is bad enough.

But I am looking to the positive and pray that this move and a new uro is going to offer new treatments and your daily pain will get better and the move will be a huge blessing in disquise. I am so sorry that you are in so much pain. I wish I could help!


Sending many (((((hugs))))) and blessings your way.

Snowden1
06-04-2010, 01:45 PM
Hi Mary,

I have been in a deep depression lately because I cannot get out of pain. Even with a pain Dr., instils, etc. My husband was called tonight by the Coast Guard. Now, there is yet another school that is open to him - the Army War College in Pennsylvania. We are due to be in Virgina and have rented a house there - July 1. We are out of our house here on the 23rd of this month and our stuff is scheduled to go there. I have an apt with Dr. Evan's the 19th. So, what now?? Not sure even if they will let him out of his current position in VA. This school would mean another promotion. Even though, I don't care about that I know he does.

I am in unrelenting pain, I am so anxious because I wake up in unbearable pain everyday. I have tried many, many things. This school would be only for a year and then we would move again. The up side is my husband would not have to be gone with that mess in the Gulf Coast area.

Oh, my goodness. Just venting. I really can't take anymore right now.

Nonna
06-04-2010, 08:02 PM
Hi Puppybreath,
You said that we could get in touch with you to get more information about the work you did based on the Headache in the Pelvis protocol. I'd like to talk with you (or e-mail) but saw that you were no longer active and don't know how to send you a personal message. Nancy

blazer 55
06-27-2010, 03:22 AM
I live on a lake and during the summer I find swimming is the best form of exercise to keep my pelvic floor muscles relaxed. However, the water can be very irritating if I don't use precaution. Vitamin E oil is an excellent source of lubrication to avoid a Vulodynia flare up. But if you can't use E then try sylicone gel. It works for me and I have had IC and Volvodynia for 3 years.

sshannon74074
06-30-2010, 03:15 PM
teresa,

I know how you feel with the pain. Its causes anxiety and panic and just makes things worse. when I feel like that I take a couple of hydrocodone. It calms me down, takes away the pain, lets me sleep, and seems to have some longer lasting effect the next day, even though the medicine has worn off. One of my doctors refused to prescribe that, even after I had an allergic reaction to Tramedol that almost put me in the hospital. I went to another doctor and he prescribed the hydro. It has been a life saver for me. It allows me to get back on track and get positive again. Right now I'm leaning towards the PFD and the headache in the pelvis theory. Stay positive Teresa.

Scott

sshannon74074
07-24-2010, 09:29 AM
I did the exercises for about a week and I was feeling much better for about two weeks and then, like an idiot, I started drinking coffee again and now I'm back in pain. I don't know if the exercises were just a coincidence or not but I'm going to try them again.

Does anyone know how PFD causes damage to the bladder liningand bleeding. Seems unlikely to me. Sometimes it feels like the pain I'm in during a flareup causes my PFD. I can feel my pelvic muscles slowly tighten up and I have to concentrate to release. It takes a lot of concentration to relax my pelvic muscles.

Scott