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Proctalgia Fugex or Levator Syndrome

Northwoodsgirl
Northwoodsgirl Member Posts: 571
edited March 2014 in Uterine Cancer #1
Ladies, a number of months ago I posted a question about any of us who might have experienced what I described as severe rectal spasms, infrequent but extremely painful lasting 30 minutes to an hour. When I say extremely painful think calling 911 type pain, take your breath away pain. I thought this might be a side effect from my radiation-particularly the brachtherapy (internal). I went to a colo-rectal surgeon today on advice of my internal medicine physician (in the same Women's Health Clinic at U of MN). After a rectal exam all seemed normal. I am going to have a pelvic MRI tomorrow (sure they want to rule out cancer). The doctor thinks that I have Proctalgia Fugex or Levator Syndome which is rectal spasms that sometimes happen at night (wake you right out of sound sleep) typically fairly infrequent. Only thing that helps me is Vicadin (left over from surgery.
No real good treatment- might try Albuterol inhaler (same as for asthma) as it is a smooth muscle relaxer. I don't really want to take a muscle relaxer as it makes me sleepy.
Anyway just thought I would post this in case anyone else ends up with this weird but painful syndrome. I guess is is prevelant in 5-18% of population. According to the literature they can't really pinpoint it to diet or anything in particular. I don't have irratable bowel syndrome (my Dad does however). Sooooo..praying that I have a negative pelvic MRI. (PS in preview mode this post says it is Dec. 31, 1969...must have a bug in the site)

Comments

  • Ro10
    Ro10 Member Posts: 1,561
    I have never heard of either of these
    I am a nurse and this is a totally new diagnosis to me. I am sorry that you are still having such pain. It sounds really bad. It surprises that the the Albuterol inhaler would work for the spasms. I too pray that the pelvic MRI will be negative. Good luck tomorrow. In peace and caring.
  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    Ro10 said:

    I have never heard of either of these
    I am a nurse and this is a totally new diagnosis to me. I am sorry that you are still having such pain. It sounds really bad. It surprises that the the Albuterol inhaler would work for the spasms. I too pray that the pelvic MRI will be negative. Good luck tomorrow. In peace and caring.

    Good luck with MRI
    Wanted to wish you good luck with your MRI, and that there is no major issue going on.

    Healthy, healing thoughts coming your way.
  • lkchapman
    lkchapman Member Posts: 106
    I just saw your post about
    I just saw your post about this condition. I have experienced this myself for many years. Even before I was diagnosed with cancer. It is a benign condition that typically begins in your late 30's and can run in families. My aunt has the condition and she queried family members and it turns out that there are many of us on my mother's side of the family who suffer from it. And I mean suffer! It is very painful and usually wakes you from a sound sleep. I did find it got worse during my radiation and just after. I asked both my gyn/onc and rad/onc and neither new what I was talking about.