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  1. #1
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    Pelvic floor pt question

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    Hello fellow icers and pfders. My story -short version-had frequency for years, but never pain. About 3 months ago thought I had a uti, didnt despite being given 5 rounds of antibiotic. yada yada, same as many here. I have seen about 5 docs in the last few months and had unrelated hernia repairs (I needed those done before I could start pt) Anyway, after not doing well on many meds (mostly the ones for overactive bladder) I started to faithfully follow an elimination diet. I also have migraines, so I left out gluten and dairy. To my delight both ic symptoms and migraines were almost non existent. Then, I was overly optimistic and drank coffee, very small amount, and also ran 3 days in a row. Plus it was about the time of my period AND i had a bunch of stress. Bad mix. Enter flare. Not horrible, but my pain had been at a 0, so discouraging. Went back on diet and in a few days the flare subsided.

    I had my first real pt session Wednesday. It was uncomfortable on many levels. I felt like she practically had her entire arm up there. She didn't talk to me at all really, I had to keep asking questions, so I have no idea what she found or really what she was doing, other than that stuff up there was tight. Since then I've felt worse and worse. She seemed nice enough, but didn't say anything to me about stuff to do at home. She did say that she had done *alot* and I'd probably hurt until around Saturday. It's Sunday and I'm trying not to be dramatic and get myself worked up, I know that contributes to pain, but I feel discouraged. I am going back on the super strict elim diet, taking baths and using my suppository valium. That valium was the piece that finally made me feel better. I have had 2 urogynos tell me I definitely don't have ic, and def have tight pelvic muscles which makes sense (3 big babies, life time runner) BUT the diet does seem to affect me.

    Now I have some pain, its not too bad, maybe 3/4, but frequency and urgency is back. I am going back to urogyno soon. Should I try to find a different pt, does that session sound normal? Not to be overly sensitive, but I found it very disturbing. I have some issues around assault and I think it definitely triggered that. I felt frozen in fear on the table and ket trying to talk myself down.

    I really don't want to spend the next 12 weeks (thats how many sessions I have scheduled) living from flare to flare, especially when I was doing so well but I also don't want to skip what theoretically will help me out of fear. Any advice is appreciated

  2. #2
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    Re: Pelvic floor pt question

    Hi Jen48, I would definitely try a different PT. I sucked it up and started pelvic floor therapy about 8 months ago, and am glad I did. My PT is EXTREMELY friendly and kind, she explains everything with each technique she uses, asks before any contact, you name it. She also doesn't get in there and 'dig around', because my body doesn't respond well to it. She uses gentle techniques on some trigger points, and some 'stripping' of adhesions, same as a massage therapist would externally, but very careful not to be too aggressive.
    She also always gives me 'homework' - gentle stretches and such to do at home after treatment. Asks me to email her or call and follow up post treatment so she knows how the techniques used helped/hindered my situation, and if anything caused a flare up for me.
    I have had a big flare from one session, but it was a big release that needed done, and long term I felt better, but I typically do not flare after a treatment. I go home and take it easy with some heat for 24-48 hours if possible, and sometimes soak in an epsom salt bath that night
    Hope this is helpful and you can get some relief!

  3. #3
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    Re: Pelvic floor pt question

    Thanks so much for the info! I do go in to see a new pt today so I am hopeful. They specialize in pelvic floor disorder so I'm hoping it will go well. I purchased 2 of the books that Jill recommends and have been doing stretches at home. Seems to help.

    The only thing that's odd is that the urogyno drs I've seen seem convinced I only have pfd and not ic. That would be great but it doesn't seem to explain why diet affects me so much.

    My diet right now is extremely limited. When I stick to it very carefully my pain stays around a 1, sometimes nothing at all. Last night I had a flare from I guess packaged oatmeal. Wasn't horrible but I was up 5 times to pee. Anyway, thanks again!!

  4. #4
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    Re: Pelvic floor pt question

    Since diet does seem to have an effect on your symptoms, it does sound like IC is a possibility. What kinds of tests did your doctor do to determine his/her opinion?

    Also, be sure to encourage the PT to take it easy --- and explain the fact that your session caused a flare.

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  5. #5
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    Re: Pelvic floor pt question

    Thanks for your reply Donna! The 2 urogyno drs did not do any tests but formerly I had cysto, several urine cultures, and a CT scan. All were clear. I urine retention test did show I retained some urine. The second urogyno was very kind and spent about an hour asking me all sorts of questions. I think it was my answers to her questions that led her to her dx.

    She seemed so confident that it was pfd and that pt would cure me, she didn't want to see me back for 4 months, but I am going in sooner anyway. I'm all on board with trying pt but I need pain relief in the meanwhile.

    I saw a urologist who seemed ready to put me on elimeron but I'm hesitant to start that without a more firm dx. It's expensive and I'm already on other meds. I'm saving that for my last resort.

    Thanks again! I'll let you know what the pt says !!

  6. #6
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    Re: Pelvic floor pt question

    I feel your pain! packaged oatmeal kills me, too (and I love oatmeal)
    I hope you find some success with PT, it has really helped me in a lot of ways.

  7. #7
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    Re: Pelvic floor pt question

    Quote Originally Posted by Braedley View Post
    I feel your pain! packaged oatmeal kills me, too (and I love oatmeal)
    I hope you find some success with PT, it has really helped me in a lot of ways.
    Thanks! I found a new practice that only does pelvic pt. I go 3 times a week now and best of all, since I already met my out of pocket and deductible from surgery, no extra charge! I went back to my urogyno last Friday. I asked again about the diet connection and she said "Oh, I guess I wasn't focusing on the frequency, I just zoned in on the tight pelvic floor muscles, yeah, there's a good chance you have IC"

    She gave me atarax and elmiron. I also asked about pain relief during the pt. She told me nope, keep taking valium suppositories. They dont help like that for me, but oh well. It has not been too bad yet. Good thing there is it (elmiron) is covered 100% too

    Hard to figure out diet. I am thinking I might have gluten intolerance too. Going to a nutritionist.

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