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  1. #1
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    IC ruled out...now what?

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    Hi everyone,

    I could really use advice. I had the cystoscope (under fully) and they ruled out IC completely. No ulcers, no tears, nothing. My symptoms are not urinary, no urgency, no frequency and I go to the bathroom no more than 6-8 times a day.

    I am 47 and I was referred to a urologist simply due to a pinching and pulling pain inside my vaginal wall. It feels like someone is pulling a string from my opening to about 3-4 inches inside on my right pelvic side. It comes and goes and sometimes I feel burning in what I thought was my urethra. I have had pelvic and bladder ultrasounds. Been tested for yeast and UTI...all normal. The pain is clockwork though. I will be fine for 2 weeks and then it comes back for 3-4 days and goes away. I am at a loss and both my gyn and urologist say it's age related. I can understand that but does anyone here have advice as to what may help or who I should see next? Thank you.

  2. #2
    ICN Member
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    Jul 2016
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    Re: IC ruled out...now what?

    Get a referral for an evaluation with a Physical Therapist who specializes in pelvic floor PT.

  3. #3
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    Re: IC ruled out...now what?

    Hi icshorty. Thank you for the reply. I apologize for sounding ignorant but what is pelvic floor PT? Is it exercises to relax those muscles. My gynecologist at first thought prolapse but I have only one child and he was born by c section. I do have other menopausal symptoms but since I am not in chronic pain I have been passed off. They tested my hormone levels and they show low estrogen but won't give any HRT bc my mother and sister both had breast cancer at young ages. It's really frustrating bc it comes out of nowhere. Thank you though I will talk to my dr about your suggestion. Best wishes.

  4. #4
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    Re: IC ruled out...now what?

    For further information, go to pelvicpainrehab.com (site for Stephanie Prendergast who specializes in pelvic pain). Look up female pelvic pain there. Pelvic floor PT encompasses evaluation of your pelvic floor (which is "internal") as well as your abdominal area,vulva,thighs and gluteal muscles. I have had lots of abdominal (c section like) surgeries,and she did some myocardial work to release scar tissue on my abdomen and groin which felt so good (after) I had tight muscle spasms in pelvic muscles (I had no idea) getting those worked on was a bit unpleasant & I had no idea that I had those knots on those internal muscles-the relief from that work was really good too. I had another PT I saw for back pain once & I was describing deep belly pulling- she had taken a class on this, and explained how the t Escher released a scar inside from her c section. That PT pushed around deep in my belly & found a bit of scar tissue and released it- that was really good and has been ever since.I am probably leaving stuff out,just giving examples of areas my PT worked on.I can't say that you have any pelvic floor dysfunction,but your discomfort is there,so I would say it bears evaluation.No chance your docs would at least prescribe estradiol vaginal cream? My pelvic floor PT says that some women who had estrogen receptor positive breast cancers are now being allowed to use it because so little is absorbed systemically.Good luck!
    Last edited by icshorty; 08-10-2017 at 11:46 AM.

  5. #5
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    Re: IC ruled out...now what?

    Thank you so much for your kind reply. I truly appreciate "being heard". I was starting to think that maybe it all was in my head which is what these drs made me believe. They passed it off as hormonal emotions. Good luck to you too.

  6. #6
    ICN Member
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    Jul 2016
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    Re: IC ruled out...now what?

    You may need to find another doctor if your suggestions/ requests are not taken seriously.

  7. #7
    ICN Member
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    Dec 2004
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    6,503

    Re: IC ruled out...now what?

    It really sounds like it could be pelvic floor dysfunction... like a muscle spasm.
    I am 50 and have had a similar pulling sensation inside my left vaginal wall for about 6 years. Sometimes its painful , most days it's just a sensation. Had multiple tests, scans, etc. including shutting down my period with Lupron ( nasty drug by the way) a couple of years ago. However I always suspected it was a pelvic floor muscle issue.
    Something else I have been dealing with for years is one hip higher than the other and accompanying back and leg pain. I just ignored it best i could til recently I googled self-adjustment exercises for misaligned hips. Watched a few videos and did the exercises and with a few minutes of the exercises my hips were aligned and the back and leg pain gone! I'm standing and walking normally now. And that pulling sensation in my vaginal wall is practically gone!
    So it may be worth it to try something like this and other pelvic exercises you can do at home or with a regular physical therapist or osteopath. In my area there are no pelvic floor therapists. They don't seem to be especially common except the n larger metro areas it seems.
    Hope this helps. Good luck.

  8. #8
    ICN Member
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    Aug 2011
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    221

    Re: IC ruled out...now what?

    I do have to agree with the others that you sound like you have some pelvic floor issues. Get a referral to a pelvic floor therapist and give it a try. As long as you have the means to do it, why not try. Like Briza, I have one hip higher than the other, mine is from scoliosis. I have done a ton of pelvic floor sessions, and have considerable tendon and muscle tightening down there. Unfortunately for me, it was discovered that the muscles were in contraction due to the amount of pain I was in from my bladder. The worse my bladder pain is, the tighter and more contracted my muscles were. Alleviating the bladder pain was the only thing that relaxes my pelvic floor. In your case, if there is not bladder involvment, you may respond very well and get relief from your symptoms.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

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