Discussions By Condition: I cannot get a diagnosis.

Levitor ani syndrome? Pudendal neuralgia? Something else?

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • February 20, 2014
  • 04:57 AM

I have been suffering with pelvic pain and pain down my legs for 4 years now. I have seen a urologist, neurologist, and gynecologist and nobody can figure out what is wrong with me. Vulvodynia, myofascial pelvic pain syndrome, endomitriosis, and internal cystitis have been ruled out. Multiple sclerosis has also been ruled out, although I have not had an MRI.

About 8 years ago I developed burning in my labia minora that would come and go. I saw several gynecologist and no biological cause was found. I have learned to just live with the issue.

About 4 years ago I developed a dull ache in my rectum that was on the left side. The pain would only last a couple minutes to a half an hour at the most and I would have about two episodes a day. Most episodes occurred at night and would wake me up from sleep.

My symptoms quickly progressed over the course of a few months and have gotten progressively worse over the years. Not only did the intensity of the pain get severely worse, but the pain spread to other areas in my pelvic region and the episodes became much more frequent.

Today, 2014, I have anywhere from 3 pain episodes a day to about 200 a day and they last anywhere from 2 minutes to an hour and to varying degrees of intensity. The pain can vary from a 5 to a 10 on a pain scale. It occurs behind my tailbone, behind my left ilium,on the left side of my abdomen in the area near my left ovary, in my bladder, and down my legs. Sometimes I have less severe pain on my right side, and experience a hot poker like sensation near my pancreas coupled with my breathing feeling restricted. Sometimes the pain is in all of these places all at once and other times it is only in one area or in several different combinations of the areas. I also experience pins and needles like feelings in my feet that runs up my my legs about mid-calf. At times my legs feel very weak upon standing up as if the want to give out.

The pain episodes can occur when I am sitting, standing, walking and laying down. Although, it does occur more frequently in the evenings and especially when I am sleeping, which it wakes me up from. The pain also seems to be triggered when I transition from sitting to standing/walking, after bowel movement sometimes, and after orgasm.

It is important that it be noted that I do NOT have any pain symptoms about 2 days before the onset of my period, during my period, and about 2-4 days after my period. Once the pain begins, it will occur daily until I am about to menstruate.

Has anyone experienced any similar symptoms? I know some of my symptoms don't line up with pudendal neuralgia and I was suspicious of levitor ani syndrome with my initial symptoms 4 years ago, but it seems like more is going on. I am just as confused as the doctors.

I am desperate to figure out what is going on as this pain affects all aspects of my life and is so painful and frequent that I do not feel like I can work, at least not consistently. I am seeing a new primary care physician in 3 weeks and will start the whole process over but, I am afraid that it will lead nowhere. At this point I want to try to figure out a possible diagnosis on my own to at least point the doctor(s) in the right direction. I want to figure out a resolution to this issue, as I can not see how I can possibly deal with this pain much longer.

Thank you for reading, if you made it to the end. :)

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1 Replies:

  • this sounds awful, has any of your dr's sent you to be evaluated by a neurologist or to a physical therapist? nerve pain, referred pain can be from physical issues such as muscle involvement affecting the nerves. sounds crazy but is true. burning pain can be nerve pain in my experience & the sacral area is a hot bed of nerve and muscle connections in the pelvic/sacral area. the muscle trains are connected,examplepain in your inner calf could be related to disfunction in pelvic or sacral muscles.
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