One Woman’s Pudendal Nerve Injury Comeback

This holiday there are women who are running around trying to get things done for their families for the holiday, but when it comes to sitting down to have a meal with them, they cannot join in. Why? Because of severe pain from injury to the pudendal nerve, all because of bladder sling mesh. This pain is so severe; it is not only debilitating, but can send these women into a very depressive state.

A few days ago I wrote about hearing from a very young woman who is a wife and mother and she told me she has just been diagnosed with pudendal nerve injury. She felt so sad and forlorn as to what the rest of her life will be and how could she possibly deal with such pain every day. It made me feel sad along with her that at such a young age, she should be left like this. I have heard from other women that are injured like this and I know how bad it is to deal with it in their lives. After all, the first thing others see about us, is our appearance. Unless you are a mesh injured woman, you know it goes much deeper than how we look. We have all heard from others how well we look, while we wince and cover up our pain. Even if we don’t cover it up, those around us still decide we are well or putting it on. We can’t change how the world views us of course. All we can do is fight to feel a little better and each of us have to do it according to our injuries.

Because of this young woman’s note, I decided to reach out to others who I know deal with the same issues. You should know that although women are injured, they will always answer my call to help others. This morning I heard back from one of these lovely, generous women and she wrote about what she has been trying, to help with her own pain. You should know that she had mesh removal one week after me by Dr. Raz of UCLA fourteen months ago. The mesh had only been in her body for a year and yet when I met her out there she could not sit down without terrible pain. She came to see me and my daughter at our hotel after my own mesh removal and brought her husband and daughter with her.

I know she is a wonderfully determined woman, who refused to let mesh take her life away from her. She is the type of woman who helps others and never gives up. If you met her you would think there is nothing wrong with her but there is. She always smiles at you and will give you a big hug. But the underlying issue is pudendal nerve damage.

If you are a family member of a woman dealing with mesh injuries, please look beyond their looks. It goes much deeper and they need your compassion and understanding.

This morning I heard back and she has shared what her doctor has been doing to help her. If you have this type of injury then you need a pudendal nerve specialist that you can work with and set up a carefully watched program. I hope her words will give you some peace this Holiday. Now read this in her own words. Before you do please note, she lives overseas and has a very difficult job that she loves and fights to keep doing.

“Yes I have made a remarkable improvement since my removal surgery. I’m hiking in the mountains (of course walking was never a problem for me). But the most notable improvements have been in my sitting tolerance. I’ve been able to sit “almost” like a normal person–a couple hours at a time. I’ve even been back at work full time, which sometimes means 1 1/2 hours travel by landcruiser to the villages, working and walking/sitting all day, and another 1 1/2 hours back on rough roads. The worst is meeting days, which may involve 6-7 hours total of sitting. Though I pay for it in pain later, I am able to bounce back! Here’s the regimen my doctor has put me on: Gabapentin for nerve pain (I only need a tiny dose) Epival (Divalproate) 250 mg twice a day. This medication apparently actually helps to heal nerve damage at this low dose, if given within 1 year of the injury. (I started it 6 months after the re-injury that happened when the mesh was removed –inevitable in order to release the trapped nerves). This needs to be taken for at least 4 months, I’ve been on it for 8. Propanolol 20 mg. at night. This is a beta blocker, and has been amazing at helping to calm the sympathetic arousal symptoms I often experienced (fast heartbeat, shakiness, sexual hyper-arousal). The calming effect on the nerves seems to help the pain a lot too. On my doctor’s advice I take an extra 10 mg preventatively whenever I’m going to be doing something that will aggravate pain, for example, sitting in meetings all day, and it really helps. Cardura 1 mg in the morning. This is an alpha blocker, which she originally put me on it because of my high blood pressure. (I only get high blood pressure when I live at high altitude–where we live now  at 3,000 meters.) She figures that chronic pain has caused my blood vessels to chronically constrict and therefore raised my blood pressure. I can’t explain all the theory like she did, but she figures somehow the combination of both an alpha and beta blocker help to reduce the congestion around the scar tissue in the pelvic area, and therefore reduce the pressure on the nerves as well.

At any rate, I have gone from lying on the couch for most of the day (for at least 6 months after my removal surgery) to being able to be on my feet most of the day or even sitting for most of the day, without excessive pain. It is amazing, a miracle really! I also would very strongly recommend the stretches in the book “Heal Pelvic Pain” by Amy Stein. Over a period of months, they have done wonders for me. I don’t have to do them as regularly as I did for about 6 months, but I credit them with a lot of the improvement I have experienced.

I also used the B vitamin and alpha-lipoic acid regimen that you recommended, for almost a year.

Another thing–I purchased an electrical stimulation unit, called the “rebuilder” which is supposed to help to actually rebuild nerves. I do have to be extremely careful with it, as it can overstimulate and make things worse, but if I’m having a pain flare from overactivity (sitting, sex, too much hiking) I use it for a maximum of 5 minutes at night and it does seem to help. It’s like a TENS unit but much more sophisticated. Linda, have a wonderful Christmas, and you are free to share all I wrote here with the young woman you mentioned. Along with you, I hope that it gives her hope! Our injuries are not only difficult to treat, but nobody really knows how to treat nerve pain well, so it’s all experimental. Like you keep saying in your blog, we have to figure out how to treat and heal ourselves!”

I cannot change what has happened to many women, but I can do what I can to give them hope. Happy Holidays and remember life is still worth living.

Update. I received a question from someone and sent this woman a note, so she came back and answered the question.  Now from this special lady.

“I do hope this brings people hope, as your blog always does!   I was thinking this morning about something else that I should have mentioned to add, about physical therapy.  I was determined to do all I could to recover so as soon as Dr Raz gave the go-ahead I began physiotherapy with a very good pelvic floor physiotherapist.  She worked with me for several months, and by the time we went back overseas I had the knowledge to continue with my own treatment (trigger point release, massage, relaxation).”

This is for the woman who asked about the leads:  I put them about where the “sacral dimples” are on either side.  I experiment and vary them a bit, placing them an inch or two above or below or further apart.  But she should be very, very careful not to overstimulate!  I never have the setting more than about 1.5, and never for more than about 5 minutes.

Oh yes, you could also add that I also take daily magnesium supplements (also one of your recommendations).

9 Comments

  1. glenda thorne

    Thank you!! You are so very generous!

    Reply
  2. Aaron

    So helpful to hear successful stories!

    Reply
    1. lavalinda

      The success is that she is determined to keep living with an awful side affect of mesh.

      Reply
  3. Ann

    Thank You for your story, I to had a bladder mesh removed August 15 2013 and the removeal seemed to go OK she got 99 % of the mesh out and overall the surgery was a success, however now I am getting vagina pain and I did see a pain management dr this week, she said that she thinks it is pain locked within the muscles which would probably be nerve pain. It’s horrible and has consumed my being, can you please make a suggestion or steer me in the right way.
    Thank You
    Ann

    Reply
    1. lavalinda

      Ann I am working on some research for this problem and I hope to have a blog up within a week. It takes a lot of time to get it done. Maybe there will be something useful there.

      Reply
    2. Ruth

      Ann, I am so sorry to hear of the horrible pain you have been experiencing since mesh removal. I understand exactly what you mean when you say it “has consumed my being” –such a true description of pelvic nerve pain, whether pudendal or otherwise. I do hope your pain management doctor has been able to help you. I would strongly recommend you try to find a good pelvic floor physiotherapist. The treatment does feel invasive and embarrassing, but I found that it was always well worth it and brought great relief at the time; and eventually I learned to do the treatments on my own. Here is a very good resource to help explain the role of PT in treating pudendal neuralgia (and pelvic pain). http://www.pelvicpainrehab.com/pelvic-pain/744/the-role-of-pt-in-treating-pn/

      Reply
      1. lavalinda

        Thank you Ruth. I know you understand this perfectly.

        Reply
  4. Roslyn

    Linda. The woman who lives overseas, what kind of dr was she going to that put her on a regimen of so many natural products , etc. Thank you for sharing her story or at least a part of it.

    Reply
    1. lavalinda

      Roslyn she does a lot with a pelvic floor therapist as well as supplements. I will ask her to do an update to share with other women who still struggle with PD nerve injuries.

      Reply

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