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
Muscle spasms
Allergies or irritation to chemicals or other substances
Hormonal changes
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.

13 Comments

  1. lavalinda

    Sharon enough said. And we still wonder why they put mesh in women when all this is happening. They should be ashamed.

    Reply
  2. Sharon McBride

    I just received my report from my colonoscopy….. OH Gosh. Linda, why did you have to write about this…… lol
    “complete rectal prolapse, gr 4 enterocele, gr 3 rectorcele (again (3rd time)enterocele, Severe pain in rectal area, recommend bowel resect 3 places), and rectopexy plus other repairs. NO THANKS severe iguinal hernias…. surgery is a revolving door. hope you like yr hospital and doc. Other Recommendations…. I won’t go there. This is enough to digest for now. , thanks
    Have a lovely day all

    Reply
    1. lavalinda

      Sharon, I want women out there who have not had mesh yet, to realize how terrible this is for the women who are injured and can’t take it back. I hate it upsets you because I posted today of all days when you got the report, but when we speak out, we can save another woman. That is why we do.

      Reply
  3. say no to mesh

    Thank you Linda. The ill effects of mesh are many and diverse. Most doctors still think that erosion through the vagina is the biggest problem. They have no clue of the life long misery many suffer because of mesh and the fact that for many of these problems there isn’t a solution.
    We have to shout it from the mountain tops. NO TO MESH!!

    Reply
    1. lavalinda

      This morning when I got up I received notes from women who suffer this way. They thank me for giving them a voice because they do not know how to express to their families how torturous this is and their doctors do not seem to get it or care. That is why they tell me because they want the world to know how bad this is. No I never expected to write about these things, but I listen to women as they tell me what they are going through. Yes they are diverse and that is why we must scream from the rooftops “No More Mesh!” Until then this will happen over and over again.

      Reply
  4. Hope Pagano

    I believe I have developed a horrible an virtually un-treatable disease called “Lichen Planus” as a result of numerous pelvic surgeries and extended use of anti-malaria medication to treat my mesh induced lupus. Just when I thought things couldn’t get worse I am pretty sure I have come down with a disease that won’t kill you but will make you wish you were dead. Horrible. Another disease know one knows much about.

    Reply
    1. lavalinda

      Hope I can’t believe after all the crap you have been through you are facing something else terrible. I just looked it up and was shocked. Have you taken advice or treatment? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3029967/ You may want to use Puracin and spray down there and see if it will give you relief. http://meshangelnetwork.com/2013/06/those-really-difficult-infections/ I also found this site http://www.drexelmedicine.org/patient-services/obstetrics-and-gynecology/vaginitis-center/about-vulvar-lichen-planus/

      Reply
  5. Still Suffering

    Thank you Linda for posting this as rectal pain is a huge problem for me because of vaginal mesh for pelvic organ prolapse and stress urinary incontinence. One of my mesh implants was placed between the vagina and rectum. If you look at a woman’s pelvic diagram you will see there is very little room between the two organs. No wonder mesh pieces were extracted from the rectal area at least three separate surgeries by Dr. Raz. Sometimes I feel as if I have a bowling ball with cactus spines in the rectum. The baclofen/valium suppositories are helpful but costly. Ice also helps. I also have pudendal neuropathy. Ugh! Maybe with time I will get better. I say never give up and share with one another! Sitting on a doughnut type pillow helps too.

    So good to see in the news that Scotland has banned mesh until studies are done. Wish we in the USA would do that too, but it greed is king.

    Reply
    1. lavalinda

      Still suffering. I do understand about cost and that is a huge problem for most of us because mesh complications drain everything you had/have. I applaud Scotland for their diligence, but it is a very small country. Here we are all so spread out and our injuries and cost stops us from travelling to group together or confront politicians. They also know this and know how tied our hands are, but I keep writing even if that is all I can do. I want the women of the world to know how bad this is and someone is listening to them.

      Reply
  6. Cathy baker

    Omg. I’m having this! Just came from having a cystoscopy. I told Dr I hurt at the touch down there, even when wiping. I’m on antibiotics for three weeks after having two UTIs back to back. I went to a different Dr. today. I really like him a lot. First time any Dr has ever really listened to me.☹️

    Reply
    1. Linda (Post author)

      I found this but it is expensive. I found one on WalMart a bit cheaper. https://www.emuaid.com/vulvodynia-solution?gclid=CJOp59_Y8tUCFQUdaQodSJEBww

      Reply
  7. Michelle Orsita

    My mesh was on the list made by Bard! I have never been the same since having it placed in February of 2009. The pain I have been through and the battle my body has gone through is so devastating! I am a very strong woman but I am brought to tears writing this. It seems that with all my symptoms, not one doctor, (well one doctor but there’s nothing she can do about it) will say it is the mesh that is causing my symptoms so I go on and take Lyrica and antidepressants and struggle to get out of bed every day! So far I can still do it but it is getting harder and harder! Much love and empathy to every woman or man for that matter who has been affected by a mesh implant and I pray for us all!!!

    Reply
    1. Linda (Post author)

      Michelle I am very sad about all that is happening and continues to happen to women because of these implants. Please watch out for antidepressants, because many can do more harm than good.

      Reply

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