Update on Pudendal Nerve Damage
Recently I posted a blog about nerve damage done to women who have pelvic floor mesh. Nerve damage is one of the most difficult things to heal and cannot be healed at all unless the mesh and the anchors have been removed. I know so many women who went to doctors and had mesh removal but were told that it is too dangerous to remove the anchors. That is correct unless you have a really good skill at doing it. I certainly would not let anyone practice this on my body as while trying they could cut one of the main arteries and you may bleed to death. I do know many women who went to Dr. Raz at UCLA including me and he has that skill and we all survived. I also know many women who went to other doctors first and at first felt symptom relief after removal only to discover within a few months they were living in serious pain again, so they finally went to Dr. Raz.
Once you’ve had mesh removal it will take time to learn if your nerve injury will heal on its own. Even if in a few months your leg injury is doing well, please don’t overdo things or you may find it returns. Women have told me this happens but when they stop and rest they get better again. Everyone is different and our lives will never be the same again, so we have to learn what we can cope with and have a degree of acceptance.
After I posted that link I was asked how a woman was doing who had pudendal nerve damage and her removal surgery was two years ago this month, so I dropped her a note and asked. She has always been happy to share with me, so that other women can be helped. I will give you the link to the last blog I wrote about her, at the bottom of this one, so that you can learn more.
Nerves are very complicated and the longer mesh is in us, IF we have signs of nerve damage such as leg, hip or back pain, there is a possibility your pain will remain. This has happened to me, but I have found help with certain supplements that make my pain more manageable so that I can live without pain medication. I have been determined from day one to improve my circumstance in any way I can and that means I have tried many, many things. I have noticed women who do that do improve their odds and learn to live with what remains of their pain and injury. It’s not easy and like many I have accepted that I will never be pain free but I want to live again and not spend all my days in a fog of pain medication. It isn’t possible for every women to decrease their pain level so that they have no need of pain meds, but many work hard at lessening it so that they can perform in their lives. This lady has been determined from day one and has sought out treatment and been diligent. You will have to decide what you can do or want to do.
Now read her message of hope:
“Dear Linda, I’ve been thinking about what I can say as a follow-up to what you wrote about me in your blog last year. I’m still doing very well, thankful to be able to be active doing a job I love. When I look back over the past year there have been some changes, but the improvements are so incremental and slight that they’re sometimes hard to pinpoint. Two things I can definitely mention are:
1)Early this summer I weaned off the Epival (an ant seizure drug) and pain levels have remained stable and minimal even without it. I’m planning to try going off Gabapentin next.
2)Some days I sit too much, especially when I’m in the car traveling out to the villages, visiting in homes, sitting in staff meetings, etc. Because sitting is no longer so limited by pain, it’s easy to overdo it without realizing that the nerves are under too much stress, and I sometimes end the day with autonomic symptoms (palpitations, sweating, and nausea). This subsides readily when I take my beta blocker, stretches, and avoiding further sitting, but it’s better if I don’t let it get to that state.
The person who commented on the post asked what kind of doctor I’ve been seeing. You wrote that I worked with a pelvic floor physiotherapist, and that is correct. I can also say that after my return overseas I was blessed to have as a doctor someone who is also a friend and colleague, willing to think “outside the box” and experiment with alternative therapies.
Because most health professionals, even doctors and physiotherapists, are not very familiar with PN (pudendal neuralgia), I really had to take charge of my own health, do my own research, and find people who were willing to look at the research I found and work with me. I realize that my injuries were not as severe as many women’s, and the extent of my recovery is also unusual.
In my opinion, the most important things to my recovery were: 1) complete mesh removal as soon as possible which stopped nerve compression and ongoing damage by mesh; 2) pelvic floor physiotherapy to learn physical strategies (stretches, internal and external massage, trigger point release, relaxation); 3) medicines prescribed by my doctor, especially the beta blocker and anti-seizure medications for nerve healing; 4) a healthy lifestyle including supplements and regular exercise; 5) the prayers of many for my healing.
Thanks for all the work you continually do to help injured women, Linda. I hope that your own recovery is going well also. My love to both you and Kim.”
You should know that this blog has an excellent search engine if you cannot find what you need to know. My blog has grown over the years as I learn more about what we all deal with and live with and how to protect yourself from those who seek to profit from your bad situation. So please use the search engine and read to get educated.
This link is the previous blog I wrote with an update from this woman.
This link will explain how nerves get damaged in your body and causes you serious pain.
This link will explain about the procedure they us and the trocars that can do damage to your nerves.
This link will give you some pelvic floor therapists for you to work with.
This link will tell you about what going to a pelvic floor therapist is like, written by someone who knows.
This link will take you to what I wrote before I had my mesh removed. I tried to explain what my life was like from the moment I got out of bed. Thankfully removing the mesh has given me a better life. I have now accepted I will always live with nerve pain.
I hope this blog will give women hope and some of the tools to try to feel better. If you have tried other things with success, please leave a comment to help others. Without women helping women we would all be lying in bed with no hope at all. Life is for living and we all want to feel better but sometimes it takes diligence to get there. Unless you live with nerve damage, no one can explain what it is like. There will be days you feel hopeless and days when you feel you can come back from your mesh injuries. It’s all part of the journey and I wish you all wellness.