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  1. #1
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    Red face IS it possible to go into remission with only physical therapy?

    I saw a urologist yesterday who wants to get me going with physical therapy. my UTI like symptoms started about 4 weeks ago after accidentally holding it to long. I started on the IC diet after 2 UTI dip sticks and cultures came back negative. I am doing better with the diet, although most of the discomfort comes from feeling like I need to go ever 20 minutes or so. Sometimes longer. I also just have a general constant ache inside, if that makes sense. I have heard that PT can do wonders! Has anyone ever gone into remission with their only treatment being PT?

    I am also doing the IC diet and am just now starting to reintroduce foods into my diet.

  2. #2
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    When I was first diagnosed with PFD, I did not have many symptoms, or flares, for several years afterward. I thought that I was 'cured'!

    However, how I was diagnosed originally was sort of coincidence. I wasn't in the same kind of pain that several people here are at that time. Just occasional shooting pain in my bladder, sore glutes and always feeling like I had a UTI or some type of gyno issue. I had several gyno procedures and my doctor couldn't find anything wrong with me and was getting a little frustrated with me, too, as I insisted that it felt like a gyno issue. She sent me for another ultrasound and happened to see webbing on my bladder when she was viewing results. She referred me to a urologist, I had a cystoscopy procedure (IC was ruled out) and finally the internal clock test uncovered the PFD. I had 6 months of PT and was given some at home exercises - no meds. All was well. That was 5 years ago...

    During a very emotionally stressful time this last June, I suddenly had a flare and it seemed to kick off a progression of old (and new) symptoms that I had believed were in 'remission'. Hypertonic PF muscles, vulvodynia, clitordynia, hip pain and shooting/stabbing pain in my glutes down to my calves. Now I have been referred to a new PT that is more of a specialist in this area as my other PT specialized in PT for IC with urgency/frequency. These aren't big symptoms for me. I am also now taking Elavil and a nightly Valium/Gaba/Lidocaine compound vaginal suppository. Vaginal dialators, bi-weekly PT, the iso-ball on trigger points...are all now part of my new regime.

    So to answer your question, yes, it is possible if it is early on I think. However, it is worth noting that it is possible that it will come back with more symptoms or more of a progression of symptoms later. At least that was my experience.

    Good luck in PT!! It did wonders for me.

  3. #3
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    Thanks for responding! symptoms have actually improved a lot in the 6 weeks that I have been dealing with these symptoms (mainly frequency, urgency, and an overall feeling of achiness in there is really the best way I can explain it). I haven't even started PT yet but since going on IC diet, I have noticed lots of inprovements with my daily symptoms. So, I am PRAYING that PT will be the thing that takes me to the end. Wouldn't that be nice? Too optimistic?? Hopefully not...

  4. #4
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    I've met several women who have in their opinion cured their "IC". We are all different, so you need to figure out what's causing yours. I think mine is yeast related, so I'm addressing my candida issue and seeing results.

    I've met women who went on Elmiron for awhile and were healed and its been 10 plus years with no symptoms. I take Elmiron by the way (2 months now). So that could be helping me too.

    So to answer your question. Yes it can go into remission and I've even been told by urologists that they see in about half the cases it resolves on its own, eventually, but it takes time.

    Don't give up!

  5. #5
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    well, I am not totally sure what caused it. I do know that My dad and grandmother have bladder issues. About 8 or 9 years ago, I got my first few UTIs (I was newly sexually active) and when I went in thinking that I had another UTI, my doctor told me that I didn't and wanted to refer me to a urologist for possible IC. I saw the urologist once and the issue resolved almost immediately on it's own. I never got diagnosed or was even examined for IC. The Urologist did inform me that I should be urinating before and after sex each time so that was the best piece of advice that I took from that appointment and I haven't had a UTI since then. Again, that was 8 or 9 years ago. I have had from time to time, some random pain during intercourse and some aches in my bladder but nothing was consistent. It would happen for a day and would go away for months. I was also pregnant during alot of my discomfort (6 years ago). Fast forward 6 years, it has now been about 6 weeks that I have had consistent symptoms. The Urologist that I saw a couple of weeks ago did tell me that I had something going on with my muscles...can't remember if she said what exactly, but she did want me to start PT before trying meds.

  6. #6
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    I had my pelvic floor tested in the beginning but I couldn't see how the pelvic floor could cause that much pain overnight. Then again I can't believe the bladder wall becomes defective overnight either. Something's up!

    You could always try some of the bladder meds while trying physical therapy, since the meds take so long to work.

    I will say this though.. I think IC is over diagnosed! I know people will disagree with me, but seriously!!! Think about it.. we are all so different in our symptoms that we can't all be suffering from the same disease.

    At one point IC was under diagnosed and now I think the pendulum has swung in the other direction. If your bladder hurts and you pee a lot then "you have IC, here's a pamphlet and enjoy your crappy diet." Ridiculous!

  7. #7
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    I have thought about trying elmiron with te PT but I would love to go med free if at all possible. It is my next step though if the PT doesn't do the trick

  8. #8
    ICN Member Tectonic's Avatar
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    Re: IS it possible to go into remission with only physical therapy?

    Quote Originally Posted by jjekblad View Post

    At one point IC was under diagnosed and now I think the pendulum has swung in the other direction. If your bladder hurts and you pee a lot then "you have IC, here's a pamphlet and enjoy your crappy diet." Ridiculous!

    I had the same thought the other day.

    Quote Originally Posted by LorieB View Post
    I have thought about trying elmiron with te PT but I would love to go med free if at all possible. It is my next step though if the PT doesn't do the trick
    How's it going? Have you been doing PT?
    "Diagnoses"
    Vestibulodynia, endometriosis, IC, PFD, uneven legs, pelvic muscular dysfunction

    Present Treatments
    Gabapentin since 04-13 for vestib. (no help so far); Falmina since 03-02-14 for endo. (Depo gave me a period for TEN months straight! ); lidocane cream for vaginal pain (not much help); Started EMDR therapy 12-26-13; Started external PT on 12-26-13; Acupuncture since Jan. '14; Chiro since Mar. '14; more to come...?

  9. #9
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    Re: IS it possible to go into remission with only physical therapy?

    I used PT ONLY. after the 1st visit, I went from peeing several times a night to only once. After the 2nd PT visit, I didn't get up at all during the night to pee. I have had probably 5 visits and I am now able to eat and drink whatever I want. I am pain free and med free. I found that mine is totally stress induced. So, if I ever start feeling a little uncomfortable down there I just do my exercises, relax and pour a glass of wine. oddly enough. it actually helps my pelvic floor issues alot. My Urologist said that IC is still in the back of her mind for me but she knows that most of my issues have been Pelvic Floor related and my muscles are doing so much better! I am no longer doing PT but am focusing on my stress levels.

  10. #10
    ICN Member Tectonic's Avatar
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    Re: IS it possible to go into remission with only physical therapy?

    Wow, LoriB, that's incredible--and encouraging~! I'm gushing with happiness for you.
    I'm really anticipating starting PT in a couple weeks. Can you tell me if your PT was internal, external, or both? Biofeedback? What are your exercises like? Stretching, internal massage?

    I can only get external PT here. I'm hoping it will be enough, but I will seek out internal if need be.

    Thanks--and congratulations--LoriB! Gosh, I feel energized after reading your post...!
    "Diagnoses"
    Vestibulodynia, endometriosis, IC, PFD, uneven legs, pelvic muscular dysfunction

    Present Treatments
    Gabapentin since 04-13 for vestib. (no help so far); Falmina since 03-02-14 for endo. (Depo gave me a period for TEN months straight! ); lidocane cream for vaginal pain (not much help); Started EMDR therapy 12-26-13; Started external PT on 12-26-13; Acupuncture since Jan. '14; Chiro since Mar. '14; more to come...?

  11. #11
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    Re: IS it possible to go into remission with only physical therapy?

    Yes! definitely find someone who can do internal PT for you! It helped me SO much. Also, it's very educational. I was told that I have a very good understanding of my body but I feel like I have so much more of an understanding now. A good PT can work wonders! I have prayed for you that you receive total healing and restoration in your body!

    Keep me posted on how you are doing please!!!

  12. #12
    ICN Member Tectonic's Avatar
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    Re: IS it possible to go into remission with only physical therapy?

    Thank you so much, Lori.
    At my first PT appointment on the 26th, I'll be asking about internal work and where I can find it in addition to what this PT can do for me. I vow to keep in touch about progress and I will keep hope alive--your success in healing is motivational to the nth degree.

    Thanks for the prayers, positive energy goes a long way in the universe, and I am grateful to it. Prayers of continued well being sent right back atcha!

    Thanks again.
    "Diagnoses"
    Vestibulodynia, endometriosis, IC, PFD, uneven legs, pelvic muscular dysfunction

    Present Treatments
    Gabapentin since 04-13 for vestib. (no help so far); Falmina since 03-02-14 for endo. (Depo gave me a period for TEN months straight! ); lidocane cream for vaginal pain (not much help); Started EMDR therapy 12-26-13; Started external PT on 12-26-13; Acupuncture since Jan. '14; Chiro since Mar. '14; more to come...?

  13. #13
    ICN Member Pernille's Avatar
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    Re: IS it possible to go into remission with only physical therapy?

    Hi LorieB and hi Tectonic,
    These are encouraging news about the effect of PT. I do the stretch exercises in Amy Stein's book, but right now not long enough to see an effect. I had an steroid injection last Friday, the anaesthetics that was mixed with the steroid made all the pain gone although the injection was only into the left side of the vagina in the direction of my leg. The doctors here always doubted whether I really have IC. But they definitely don't overdiagnose here in Denmark, on the contrary. So I was always worried that I have IC, but the doctors don't see it. Now I start to think that I might have PFD only and that this causes my urethral burning. But good to hear that PT helps. I will try to find a therapist who is able to do internal therapy.
    Merry Christmas!!
    Pernille

  14. #14
    ICN Member my2boys99's Avatar
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    Re: IS it possible to go into remission with only physical therapy?

    I was wondering if I might have PFD along with or other than IC. This is all so confusing. I have been reading about PFD and IC and I certainly have symptoms of both.

    I am currently having retention from amitryiptiline (Elavil). I started it over a week ago at 25mg and then increased it to 37.5. That was when I couldn't hardly urinate yesterday. I almost ended up in the ER with a catheter. But I was able to relax enough to go a little at a time. I am still having problems some going today. I have to really concentrate on relaxing.

    I also had retention with Vesicare. The one drug that did seem to help me a while back was Flexeril. I was just reading about PFD and a lot of it sounds like me.

    My main symptom of frequency. My urine flow is usually weak. I get retention rather easily from meds. I have shooting pain (feels like nerve pain to me) that starts up near my ovary and shoots down the right side of my urethra. Sometimes I get terrible vaginal pain. I do have problems falling asleep from my anxiety (due to all this pain and frequency), but usually sleep all night or only get up once. I have not been able to pinpoint any food related flaring, although I am being very careful with what I eat (from the ic diet, first column mostly).

    I am having a cysto/hydro on January 7th to see if I do have IC. I might have both, who knows? I am in a nasty flare from all that retention yesterday.

    I am curious to those who have had PFD, how were you diagnosed? What meds helped the most? Did PT help and if so, what did you do in therapy?

    I am going crazy waiting to find out what's going on with me.

    Thanks,
    Jane

  15. #15
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    Re: IS it possible to go into remission with only physical therapy?

    Hi Pernille and My Two Boys! Pernille, yes! find someone who can do internal PT, if you can. It's amazing!

    My Two Boys, I have never taken any medication. I wanted to try PT first and my Urologist agreed that it was smart to do. It helped me tremendously with relaxing my muscles. It has ABSOLUTELY DONE WONDERS FOR ME. I can eat, drink and have sex without any issues. I drink wine, coffee, martinis and eat pizza...etc. I have zero issues, but I do believe that most of my issues stemmed from PFD and stressed induced it.

    Merry Christmas to you all!

    ~Lorie

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