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Pelvic Floor & IC - Quick Summary

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  • Mmilheiras
    replied
    Re: Pelvic Floor & IC - Quick Summary

    Hi mandee,

    I just started pft this week and was wondering if you have had any success since December with it? Has it helped with your IC?

    Leave a comment:


  • Mandee24
    replied
    Re: Pelvic Floor & IC - Quick Summary

    I started pelvic floor therapy about a month ago has this helped anyone with their symptoms or sex life? I just want to have a normal sex life😔 was wondering if anyone found significant relief

    Leave a comment:


  • acheter
    replied
    Re: Pelvic Floor & IC - Quick Summary

    I've had success with most of my meds for at least 4 weeks into the med therapy but then it seems all heck breaks loose. So i'm hoping I get a tens unit tomorrow so I can take it home.

    Leave a comment:


  • Antonia11
    replied
    Re: Pelvic Floor & IC - Quick Summary

    The funny thing about PFD is that I recently had to go to a uro-gyno prior to being able to get fully DXed with the 10 muscle tears. This uro-gyno (who cofounded the International Pelvic Pain Society (IPPS) was convinced that I didn't have IC (his whole staff as well), but that I'd had PRF for 21 years. I just think this is highly unlikely, in my case at least. Other than the bladder pain and occasional hamstring tendon/hip pain, I've had a VERY HAPPY pelvis until it was injured! IN fact, it was my favorite part of myself. I couldn't imagine not being sexually active (I actually though that ceasing this activity for even a day would result in my immediate death from such trauma. But he insisted, and (rather condescendingly) told me, as I explained that I was having trouble suddenly urinating--since my two injuries-- as well as being able to move my pelvis forward or do so much as a crunch (I used to do 90 a day, minimum) that he understood, but knew the reason for this very well. Well, the reason was that I had torn my rectus abs at their attachment on the pubic bone and they weren't about to let me use them anymore for so much as a pelvic tilt. He finally consented to at least state that I had PFD as a RESULT of at least the labral tear, but his staff kept explaining to me that my IC DX was incorrect, and that it was actually PFD all along. Do most women with PFD for that long not notice it but feel extreme pelvic comfort instead or are able to have babies in 3 hours without stitches? I'm seriously asking these questions and not rhetorically.

    I don't doubt that PFD is quite real, and have now experienced it in rather extreme ways, and it's not pleasant. But it sure isn't how i felt the entire 2 decades of having IC.

    He also said something rather telling to me; after that first visit, I asked how people deal with the ego blow of a DX such as PFD. He said he had literally no idea what I was talking about. So, I as delicately as possible, told him that he had basically said that my sexual organs had been "dysfunctional" for a few decades, and that I considered that a major blow to the ego. He still didn't get it, so I just said, "OK, if you went to a doctor and they told you that your PENIS hadn't been properly functioning for 2 decades, would you feel it as a blog to YOUR ego?" Finally the lighbulb went off. But then he said I was the first woman in 30 years to have ever expressed such a sentiment.

    Maybe I'm really just that weird, but I doubt it. Do other women really not feel that way about PFD or any sort of sexual dysfunction? Because I was about to join an ED support group. To have someone call itno question your sexual virility, well, even with severe enough injuries that I couldn't stand up properly, I STILL was quite preoccupied with the idea of being told that my "junk" wasn't working. PLEASE, someone tell me I am not alone in this. That's a large part of a person's identity, their sexual capabilities and virility. Yet here I was being told that not only do I have dysfunctional lady parts, but that ladies aren't bothered by having their sexual prowess called into question. Am I just weird? I really, REALLY value(d) my sex life, and wasn't clear as to why I was supposed to view this differently to how a man would, apparently. It was actually how I was able to ignore my IC symptoms so well--I wasn't having anything that would interfere with "marital relations", absolutely not!

    In other news, this IPPS founder went from getting me in same day to not being able to schedule me suddenly for 2 weeks. I repeated that I'd had surgery, but was told that I didn't have surgery from HIM, and therefore I needed these orthopedists he seemed to have some grudge against. Not even a new script for pelvic floor PT, nothing. Basically, a huge bill and some rather snippy comments about me seeking treatment for my injuries elsewhere (He actually called my surgeons, who are top in their respective fields, "shysters"! "Sure, you can go and have some syhysters cut into you all you want, but your problem is still PFD!! And always has been!" He was really quite upset about the whole idea that other injuries can cause these symptoms.

    It was just all very strange....and he is considered one of the top in HIS field. Maybe he's just territorial?

    Sorry if that was a bit TMI, but I'm honestly very curious about this!

    Leave a comment:


  • shilpa
    replied
    Re: Pelvic Floor & IC - Quick Summary

    Originally posted by bjcov View Post
    If anyone knows of a good PFD therapist in the Eastern side of Washington State, plz let me know. Seattle is 4 hrs away from me so that wouldn't work for me.
    I live in ellensburg and go to Seattle for PT. Let me know if you find someone nearby

    Leave a comment:


  • ICNDonna
    replied
    Re: Pelvic Floor & IC - Quick Summary

    Originally posted by songbird7 View Post
    I want to say that I am doing daily meditation for many decades and relaxation works to a point. What is this valium suppository? You insert it in the vagina?
    Valium suppositories are put together by compounding pharmacies and require a physician order. Yes, they are inserted in the vagina.

    Donna

    Leave a comment:


  • candylea
    replied
    Re: Pelvic Floor & IC - Quick Summary

    Yes, it is used that way but I got no relief from it, so my dr put me on oral Valium three times a day and it seems to help. I no longer go to PT for the PFD because after several months of going and it still hurt every time, my dr said there was no reason to continue to put myself thru this, but he did say that yoga would probably be a big help. I haven't started it yet, but I plan to in the very near future, and he has me walking 20 minutes everyday and believe it or not, even tho it causes some pain, it does seem to help my attitude and outlook on things.

    Leave a comment:


  • songbird7
    replied
    Re: Pelvic Floor & IC - Quick Summary

    I want to say that I am doing daily meditation for many decades and relaxation works to a point. What is this valium suppository? You insert it in the vagina?

    Leave a comment:


  • songbird7
    replied
    Re: Pelvic Floor & IC - Quick Summary

    Originally posted by earthlady View Post
    When you find a good therapist who knows how to do this type of therapy it makes all the difference in the world. My first few sessions were pretty painful, but after the muscles were relaxed it was great.
    I am not looking for pain at first, I get enough of that. Sometimes a gentle chiropractor adjusts my low back which might be out of alignment causing IC and pelvic floor pain. However right now as I write the bladder doesn't hurt, just the pelvic floor and all this treatment for pelvic floor besides being invasive may hurt in the pocket book as well. Looking for help but not invasive.

    Leave a comment:


  • candylea
    replied
    Re: Pelvic Floor & IC - Quick Summary

    I started PT for PFD about a month ago, going twice a week. I haven't felt an improvement yet, but since I can't find a pain management doctor that will see me, I'm determined for this to help eventually. My Uri-gynecologist said she had never felt a pelvic floor muscle as tight as mine and sent me there and they've done biofeedback! tens machine and lot of massaging the muscle, inside and out.
    Hopefully I'll get some positive results from this soon.

    Leave a comment:


  • Snystrom89
    replied
    LoriSue

    I found a list of questions that I brought with me when I visited my first physical therapist. I found them from a website and for the life of me I cannot find it right now. I am trying to remember off of the top of my head.

    Do you know about IC?
    Do you do biofeedback?
    If you find that what we are doing is not working are you able to come up with alternatives?
    If I am not able to come in as frequently for appointments are you comfortable setting up a home regimin for me?
    Do you know how to perform internal and external massages?

    I will try to find the link. There are a lot more questions and probably more specific than the ones I have. I am also seeing a therapist who is out of network. Luckily enough she was fine with me coming in only once a month. This means that I have a lot of homework to do on my own. I think that it is worth it going.

    Leave a comment:


  • Clevsea
    replied
    Originally posted by LoriSue View Post
    Hi. I'm hoping someone reads this. I didn't want to start a new thread related to Pelvic Floor issues.

    I have an appointment in a week to be evaluated for physical therapy. My urologist recommended that I do this. However, the therapist she recommended (who specializes in this kind of thing) is out of network for my insurance. My insurance company assures me that where I'm going does do pelvic floor physical therapy. Can someone recommend some pertinent questions to ask the therapist so I can determine if they know what they're doing? What can I expect? I'm fearful that this could turn out to be harmful rather than helpful.

    Thanks in advance!
    It's good to be prepared. I just finished 10 weeks of pelvic floor PT. I was sent there by my colon doctor so I had to tell my pelvic floor PT about my IC quite a lot of the time. However, she did know a lot about it. She was the first one to recommend "The Interstitial Cystitis Survival Guide" to me. But even with that she wasn't always perfectly knowledgeable. For one thing she had me doing 60 kegels a day and that may or may not be a good idea for IC people. She put me on prune juice and she said I had bladder prolapse. Oppps....guess not, because my IC doctor examined me and said I didn't have prolapse.

    Two things:

    #1) Get reading and read a lot so that your head is full of info

    #2) Don't teach her, ask her all about IC like it was a free-form essay. Say, "what do you know about IC?"

    I think that will be a clear indication of what she knows or doesn't know.

    I just finished PT for my shoulder with a different person. I had to keep telling things as we went along if they pertained to what we were doing. I didn't teach her all about it, just the little things like I can't sit on a bicycle seat and I started bringing in my own cushion. I asked her if she knew what IC was and she said she did but I could tell that she did not comprehend what this really meant. Towards the end of the treatment she got a little softer on it, a little more caring. Maybe she Googled it.

    Lastly, I would hope that your urologist would recommend a PT with some decent knowledge. Just remember to stand up for yourself, don't hurt yourself. Who cares what she thinks! Be your own advocate.

    Clevsea

    Leave a comment:


  • LoriSue
    replied
    Hi. I'm hoping someone reads this. I didn't want to start a new thread related to Pelvic Floor issues.

    I have an appointment in a week to be evaluated for physical therapy. My urologist recommended that I do this. However, the therapist she recommended (who specializes in this kind of thing) is out of network for my insurance. My insurance company assures me that where I'm going does do pelvic floor physical therapy. Can someone recommend some pertinent questions to ask the therapist so I can determine if they know what they're doing? What can I expect? I'm fearful that this could turn out to be harmful rather than helpful.

    Thanks in advance!

    Leave a comment:


  • Snystrom89
    replied
    Hi everyone,

    Just wanted to give a quick update. I did make an appointment with the therapist who was booked until August. Luckily enough she was able to fit me in today. It was amazing. She was calm and totally understanding. She checked my posture, and did both an external and internal exam on me. Looked for trigger points and found a few. In the end when I asked her if she thought PT would help me she said that it would. A lot. She said was was way too tense. That I should probably go and see my counselor again for my anxiety which is definitely not helping me relax.

    Thank you everyone for your support. I am only going to go once a month because this is going to be pretty expensive. If anyone is in the Santa Cruz area then I have a PT that is trained in Pelvic Floor therapy. I dont know if I am allowed to post her information online so PM me if anyone would like a recommendation.

    Leave a comment:


  • Snystrom89
    replied
    Cair,

    May I ask you a few more questions about your experience with physical therapy? I know I just started less than two weeks ago but I have noticed that my urgency has gotten better. I can go at least 4 hours before really needed to pee. I do have burning in my urethra even when I am not urinating. I try to ignore that during the day but sometimes I feel very hopeless. Does physical therapy help with the urethral burning?

    Did you follow Amy Stein's program and do the stretches and then the strengthening exercises? Also, did you have massages done? I do not think I am doing them right but I do try do massage both externally and internally based on what Amy's book says. I am trying to work on this without seeing a PT. I can't afford the other PT at the moment but I ma be able to in a few months.

    I know I am asking a lot and it is alright if you are not sure and dont know. I only know one other person who has IC and hers is strictly diet related. When I am not in flair I can eat anything I want and nothing happens. When I get stressed out thats when it comes back with a vengeance.

    Leave a comment:

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