Mesh and Pudendal Nerve Damage

I am only sixteen days since my full mesh removal surgery by Dr. Raz at UCLA and yet I am happy and hopeful.  I am dealing with two things now.  Incontinence and right leg muscle pain, but I am hopeful that in time, gentle exercise will take care of and ease the muscle leg pain and time will heal the incontinence.  Last night a small step was achieved.  I got through the night without changing incontinence pads and although I was not completely dry, I did not drown myself and that was a big thing to me.  With mesh complications and recovery, we take those small improvements that we have every day.  I also remind myself I am one of the lucky ones.  I found a great surgeon who removed it all including arms/anchors.  But enough about me.

I try no to lose touch with many women and since surgery I have been calling those who had complete mesh removal by Dr. Raz or other UCLA doctor, from one month to a year ago.  It allows me to share with you their recovery and the types of injuries they have with mesh complications.  One of the hardest to improve from is an injury to the pudendal nerve.  If you don’t understand where this nerve is, you can learn here.  http://en.wikipedia.org/wiki/Pudendal_nerve

Why am I writing about this particular nerve you may wonder?  It is because as I speak to women I have discovered that the damage done to this nerve is the most devastating and the most difficult to heal.  This is because these women cannot sit!  They have to live on pain killers to get through the simplest of task in any day and wind up walking and laying.  Two days ago I spoke to a lady who had full mesh removal many months ago and as I spoke to her I heard her struggle.  It had been rough.  She had tried a couple of treatments but none lasted more than a couple of months.  She finally found a pelvic floor therapist who in three months has helped her the most and although it will take her a long time to heal, she is learning how to cope with this injury and what she can do in the long haul.

She explained to me the therapist’s way of helping her.  I was wary because so many women have been sent to physical therapy after surgery and they wind up in so much pain they don’t go back.  I believe the difference is in the therapist who wants to learn from the women who have pelvic pain disorders and spends time studying a women’s pelvic region.  So as she told me how it was done, I understood this was a good thing and asked for her therapist’s name in Illinois.  Then I emailed her therapist for a list of others who could give women more hope to heal from this injury.  She wrote back to me and now I can share this with you.

Remember, each therapist practitioner will be different.  You have to work with her and he/she work carefully with you.  I was told that the therapist said that the aim is not to cause pain.  That is a good guideline.  This is the group and if you click on the link the therapists will come up around the country and one in Canada.  I wish there were more of them, but perhaps as more mesh injured women come forward, more therapist’s will learn what they can do to help them.  Unlucky for me there are none in Houston which is the forth largest City in the U.S.  Hopefully I can manage without one.

http://hermanwallace.com/practitioner-directory

If you know of any other ‘good’ pelvic floor therapist, please share in the comments below. 

I heard from one of the women who helps me talk to other women and she has been reffered to a physical Therapist in Seattle Washington and the woman was trained at UCLA.  http://kathewallace.com/pelvicflooreval  Thanks Pat for your continuous caring.

Hopefully more women will recommend other P.T to share with those suffering.

There are many women who have undergone FULL mesh removal and are looking for help to heal.  I state ‘full’ because until all mesh, arms and anchors are removed, you cannot guarantee that those ingredients are not causing your pain.  The only place I know that can remove it all and guarantee it is gone is at UCLA.  Here are the doctors who remove it.  http://meshangelnetwork.com/2012/08/so-much-hope-for-mesh-removal-surgery

3 Comments

  1. LK

    I Am scheduled for partial sling removal although the entire sling may eventually need to come out. Thank you for recommending UCLA. After visiting other Doctors, I was becoming pretty desperate. As you stated UCLA really has stepped up to help.

    Reply
  2. Robin Robbins

    I have found VERY good websites for Pudendal Neuralgia which I was diagnosed with and was the FIRST thing that matches my symptoms after the 12 yrs of having mesh which CAUSED the disorder. So I officially went through the nerve shots into my Pudendal Nerves to deaden them which they did for about an hour each time, first time I jumped off the table so much when they hit the Pudendal Nerve WHICH controls you buttocks, leg and pelvic region they missed and my left leg was numb for two days! You see they get a scanner to find the nerve, supposedly give a pain shot first that never helped me at all and then put the needle with pain meds and sometimes I would tell the Dr. To AT least sing HAPPY BIRTHDAY before trying the nerve shot after the pain shot! THen they locate the Pudendal Nerve put the needle in and MOVE it around until you can feel it in the Pudendal Area! WHILE supposedly lying still! The 2nd time I asked for Valium he gave me 3, I took 3 and he could not believe it, could talk to him fine and everything. BUT I HAD HAD SO many yrs of severe pain that is what it took! The 2nd and 3rd shot deadened the nerve for about an hour. Then he said OK YOU HAVE PUDENDAL NEURALGIA! and also diagnosed me with Fibromyralgia, He did some trigger point shots in my back from muscles tensed up from so many yrs of pain. THE LAST one I found out later he TORE the muscle! My PT who suggested him said no more Trigger point shots from him. AND she did not recommend the operation he recommended which was to go out of state to a Doctor who would operate on the nerves in my back and loosen or sever them that went to my bladder and were Pudendal Nerves. 60% chance of success and 2 yrs to find out because it took that long for nerves to heal. THIS is the Dr. who said Lawyers were all making up the SLING thing and mine had been completely absorbed!
    But the site I found that are GOOD about Pudendal Neuralga are
    http://www.medicalnewstoday.com/releases/54832.php

    and http://www.spuninfo.org/index_files/WhatIsPN.htm

    Thanks and Blessings, RR

    Reply
  3. Vickie H

    I am looking for a doctor to remove my bladder sling in Iowa or Illinois. Does anyone have any names for me.
    Thank you!

    Reply

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