Pudendal nerve damage nightmare !😦

Hi there, I'm new to this, so please bear with me. I'm a 49 yr old woman who is living with a nightmare of daily challenges to put my life together while I am in constant pain and suffering from severe lack of control of my pelvic area organs , all due to surgery to lift my bladder. This all began in July of 2014, at my six week follow-up appointment for surgery, I told my surgeon about the symptoms that I was having. I was surprised when he automatically suggested that it was pudendal nerve and wanted me to see a specialist in pudendal neuralgia for therapy. I have a lot more to write about my journey to bring it up to date but I now need to get rest, I'm not able to sleep because of the painso I tend to nod out during the day. I hope that I can get advice from you all when you have more information about me and my journey.

11 Replies

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  • I can fully appreciate your circumstances.  All I can say is that you are lucky your consultant had even heard of pudendal neuralgia!  My pain started after a vaginal rectocele repair in 2013.  It took til 2014 for me to self diagnose and see Dr Greenslade in Bristol privately. Who have been seeing? There are many of us that can understand the pain you are in, it is like no other! 

  • Yes as sueboooo  said in her post many consultants have not even heard of pudental neuralgia. My story is almost identical to sueboooo, I to had a bladder and rectal prolapse back in 2012 when the pain never decreased over time it was a living hell till I finally got to see miss el Neil in London on the nhs and she prescribed pregabalin and amitriptyline to help with this nerve pain. so yes we thoroughly understand where you are coming from with this. I feel we will never be free of this pain but the right meds can help give us some quality of life. hope this helps

  • The pain and level of dysfunction brought in by this condition is unbearable at times. It is truly the work of the devil. I have to work and I am alone in my fight against this nightmare. Life presents us with daily challenges and we suck it up and overcome them most of the time. However, this condition seems suck all the fight you have in you out.

  • I know this is hard. I ise a donut pillow and a foldable stool wherever I go, it helps some, since I can't seem to sit at all without extreme pain. My pain doctor is highly encouraging me to get a neurostimulator. I'm getting ahead of myself, I've had many procedures and tried all the meds on the market. Botox injections helped and gave partial relief for about a month. They were excruciating. They became less effective over time. Hang in there and keep searching for help. As others have said, at least your doctor had some knowledge of pudendal neuralgia. I was into this 4 years before someone figured ot out .

  • How frightening to be on such a painful journey and feel totally alone. It helps me to remember the expression, "I can't, but we can." If you participate in this forum, you will find support and tips from many others who are familiar with your symptoms. My first disabling surgery was 2005. It is quite an adjustment to learn to live with pain and disability, but also opens the door to many unexpected opportunities.

  • I don't know if this will help, I joined this group to see how I can help my son with his pelvic pain, after 4 surgeries and more hospital stays because of adhesions and blockage, which were caused by the surgeries and supposedly could only be removed by surgeries.

    After his last 9 day hospital stay, we booked him a week with Tracey Miles, Canterbury, who treat pelvic dysfunction in Men, Women and Children including:

    bladder and bowel control problems 

    overactive pelvic floor disorders

    pelvic girdle pain / pelvic pain

    pelvic organ prolapse

    pregnancy related pelvic disorders

    ante-natal / post- natal pain

    trigger point release

    thieles massage

    breathing control

    lymphoedema massage

    It is worth checking her out, for the 1st time he feel much better than he did in years, she's cleared most of his adhesions and moved things back to where they belong, thankfully without a surgery and hopefully without the threat of further surgeries.

  • Hi, to everyone suffering from this ghastly condition. I wanted to spread a little bit of hope,as I have been a victim of pn for nearly eight years, following terrible treatment from a gynaecologist.

    I have been through most of the recognised treatments, including nerve blocks,London, spinal blocks, Botox CBT, Bristol, two years pelvic physio, Ruth Jones Southhampton, acupuncture, surgery Istanbul, and many more, nearly all self funded, with very little improvement at all.

    I recognise there are huge variations in the symptoms people suffer, which is why my vast improvement, May or may not be helpful to others.

    Whilst not being able to sit down is probably the most common symptom I was also unable to stand, this was probably worse than sitting, my muscles would spasm, ans the nerve would scream.

    I always felt there was a large hip component.

    Last years I started doing lateral hip strechers whilst seeing David McCoid,that gave me the most improvement I have ever had. I might add that many of his other exercises have not  helped.

    Recently I added several minutes a day on a power plate, something we purchased a few years ago . The difference to using it, is I sit on it with a couple of cushions.

    Without doubt I am in the best place I,ve been for years. Whilst still unable to sit without the aid of a cushion, and still taking a very low dose of tramadol and amitryptyline. I am able to lead a fairly full life, and am nor constantly dominated by pain.

    If I can help anyone, please feel free to pm me.

    Lucyp

    I

  • Can you des ribe how you do the lateral hip stretches please? I have si joint dysfunction with PN and I'm wondering if they could prove helpful to me.

  • I have some elastic physio bands which are very strong stretchy band. I put these around my ankles and extend my legs out sideways, alternating each leg. I started with light bands and worked up both in number and strength of streches.

    Lucy

  • Thanks for the description...I have some of those bands of varying strength and will give it a try!

  • Hi Chrissy . I understand pain and yet after your operation and before  your operation that was supposed to stop  that  pain and trauma, yet your body keeps hold of those experiences that we often go through, and yet we all cling to the ideas and beliefs that the surgeons and specialists will cure your body , but the facts are the  discomfort has been registerewd in your mind , doctors treat everything below your neck.                      Therfore as a certified  Advanced Master Hypnotherapist , Healer  And Rapid Results Pain Consultant. There is help  which will either diminish your discomfort and all those  memories that your body has relating to everything that you have been through . 

    Which we treat in a theraputic way through the power of hypnotherapy, which will stop your discomfort on every level as you begin to think out of the box , and see someone that  can and will actually help you to regain your life back instead of someone whom keeps you on medication, thats if you have the insight to move foreward . Contact me on Face book UNDER NAME  (Chris Lord) 

    Authour 4 books relating to Health Issues

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