Vaginal & Anal Nerve Pain
This morning I had yet another conversation with a woman in Argentina who has had mesh removal in her own country after finding this blog, but she is living with nerve pain in a place that is very personal and private. Pain that shoots in her vagina and anal passage. Sadly this is happening to so many women both before and after mesh removal and they barely get through each day.
I first heard of this two or three years ago when it was happening to a very young woman who had not had the mesh removed. We spoke over the phone and she felt desperate. She was twenty one years of age when the mesh was put into her body after the birth of her second child and this was five years later. It was my first shocking realization that this could happen to such a young woman whose body was still changing. It made me sad and angry when she told me her story. Now however, I am afraid I have got used to hearing such stories of young women who are injured by mesh because it happens all the time. But it has made me keep fighting to let women know what can happen with pelvic floor mesh surgeries, REGARDLESS of the brand or how it is made. Please understand that the giant issue is the MESH!
Getting the word out that mesh itself is the cause of all the internal damage done to women is very difficult because the emphasis and focus right now is on brands. The TV adverts by lawyers highlight certain issues, but they also offer doctors the perfect sentence to tell women when they go for pelvic exams. “I don’t use that mesh!” Until we rid the message that it is only certain brands or types of these implants that is doing the damage, then thousands of women will go through what we are all going through now. So the rhetoric must change! Instead of spreading the word about the type or brand that was used in your body, please change your speech to stating to every woman you meet that MESH is the problem.
I often wonder about that young woman who used to call me from time to time. I knew she was trying hard to get insurance to go out to Dr. Raz at UCLA, but money was difficult and she had to have someone care for her young children while she was away and during recovery. For young women there is a lot to consider. Who will care for their babies, not just while they are away, but during a difficult recovery, when babies need picking up and holding for comfort? Frankly I cannot imagine how hard this would be and I feel for every young woman who has to make the choice to leave her small children while she travels a long way to have a surgery.
I did not know at that time how mesh could cause such devastating symptoms, but now I have heard it over and over again. What I have come to realize is that the placement of mesh can often be where these nerves can agitate and cause a woman to feel like she is going crazy. They have described to me of feeling that someone is pushing the point of a knife up into their vagina. They also say that after a bowel movement the pain becomes intense and sometimes they scream or call out. I personally have not had this kind of pain thank God, but I know there must be thousands of women who do.
What I did learn from that young woman was about the suppositories she was using just to have sex with her young husband to try to help with the pain when she had sex. She told me that she had a prescription and they were put together through a compound chemist. At that time I searched hard and found a small group of women who were chatting about this subject of how to ease this very personal pain. But like everything, times have changed and so much more information is available.
Regardless of how much work I do there is a growing community of mesh damaged women who are now struggling to live their lives while they endure their very personal pain. There is also a growing community of doctors who will prescribe these suppositories without the word getting out that mesh caused their issues. They have new names without the real cause and very few doctors will dare tell the truth even if they want to.
One of those names is vulvodynia. So I found the following article on web MD.
Women with vulvodynia have chronic vulvar pain with no known cause. Until recently, doctors didn’t recognize this as a real pain syndrome. Even today, many women do not receive a diagnosis. They may also remain isolated by a condition that is not easy to discuss. Researchers are working hard to uncover the causes of vulvodynia and to find better ways to treat it.
Types of Vulvodynia
Vulvodynia affects the vulva, the external female genital organs. This includes the labia, clitoris, and vaginal opening. There are two main subtypes of vulvodynia:
Generalized vulvodynia is pain in different areas of the vulva at different times. Vulvar pain may be constant or occur every once in a while. Touch or pressure may or may not prompt it. But this may make the pain worse.
Vulvar vestibulitis syndrome is pain in the vestibule. This is the entrance to the vagina. Often a burning sensation, this type of vulvar pain comes on only after touch or pressure, such as during intercourse.
Possible Causes of Vulvodynia
Doctors don’t know the cause of most forms of vulvodynia. And there is no evidence that infections, such as sexually transmitted diseases, cause vulvodynia. Researchers are trying to find the causes of vulvodynia. They may include:
Nerve injury or irritation
Abnormal response in vulvar cells to an infection or trauma
Genetic factors that make the vulva respond poorly to chronic inflammation
Hypersensitivity to yeast infections
Allergies or irritation to chemicals or other substances
History of sexual abuse
Frequent antibiotic use
If you aren’t angry when you read this, then I will be very surprised. Right on top of that list should be MESH COMPLICATIONS!
This is why we must change the rhetoric of how we speak to other women and we must tell women that mesh is causing our complications!
Now you know that your symptoms are real, what can you do? You need to find someone who will listen to you and have a prescription put together so see if this can help you. I found the following information about one of these products but I have no doubt there are more. Please discuss this issue with your pelvic floor therapist and maybe she can find you a good doctor who will listen to you and prescribe what you need. This was the dosage suggested on the same link.
“A recent retrospective chart review of patients with high-tone pelvic floor dysfunction who used 10 milligrams of vaginal diazepam compounded suppositories at bedtime for 30 days in addition to other therapies report ed subjective improvement in 25/26 women and improved perineometery readings (Rogalski, Kellogg-Spadt, Hoffmann, Fariello, & Whitmore 2010). The usual dosage prescribed is 5 to 10 milligrams of diazepam tablets or compounded hypoallergenic suppositories or creams used vaginally up to three times a day. Anecdotally, pain relief has been significant, without the adverse effects common with the oral diazepam. This article presents results of one clinic population’s use of diazepam vaginally off-label for PBS/IC, pelvic floor dysfunction, and/or vulvodynia.“
You may wonder what a compound chemist is. I can tell you that most towns will have one of these chemist’s in it, unless it is very tiny.
I did tell the lady in Argentina that I had needed to write a blog about this, and I gave her a link to help her understand the product. I also told her about the new translator on this blog and that I am sure many women in her country are suffering and don’t know what to do or why it is happening. She answered, yes she was sure because this surgery is now very fashionable. It made me hurt in the pit of my stomach. I know she is trying to spread awareness there and perhaps the translator will help. This truly is a World problem.