Is it possible I have Pudendal Neuralgia or Vulvodynia

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I have been on the internet driving myself crazy.  I think I may have Pudendal Neuralgia or Vulvodynia.  I am better in the morning.  As the day goes on it burns more and more.  Hurts more when sitting.  Also burns when walking but not as much or lying down.  I feel like my life is over.  Dont even know what kind of doctor to go too.  Anyone have Pudendal Neuralgia or Vulvodynia?? Help.  Anyone out there from the New Jersey area and can recommend a good doctor? On my 13th day of Estrace and itching and burning so bad in my vagina.  Not on the outside. 

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  • Posted

    Hi Linda,

    I understand what you are going thru. I have had many uti's in the last year and a half. I had a hysterectomy a year ago due to fibroids. My specialist diagnosed me with atrophied vaginitis. I am taking bioidentical hormones. It took many months but I. M starting to feel better. I see Dr. Michalewski in Lakewood, NJ. He is a urologist/GYN. He works out of Monmouth Medicsl. Best of luck!

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    • Posted

      Thanks for getting back to me.  A Jersy Girl.  Are you happy with this doctor?  What were your symptoms?  Did you start on non bioientical hormones.  Were on oral or cream?  I am concerned I may also have other issues.
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  • Posted

    I have been taking bioidentical hormone oral gels for 13months. Dr. M. had his asst. do blood work and the results were that my estrogen level was quite low. This is probably the reason for the atrophic vaginitis. I had a lot of burning and vulva irritation. The doctor recommended applying mineral oil on the vulva several times a day. It helped me. I am also in menopause.

    I do like my Dr. He is very professional. His staff is excellent.

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    • Posted

      Hello Maryann, 

      Thank you for sharing your experience; and its so good to hear of a good doctor and a positive experience. 

      I'm also on a bioidentical estrogen gel that I put on my arms; but have never heard of oral gels. What brand is that? Are they compounded? 

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  • Posted

    I had vulvodynia in 2013, and it was exactly as you describe. I know how you feel, is is horrible and has an impact on you daily life. It can also cause depression. At times I felt like I just wanted all the skin in that area to be cut away. The good news is that after 1.5 years I was pain free. It is not easy to get rid of and I tried many different things before I found what worked for me. What works best is different for different people. I can tell you what I did. It is also important to remember that whatever works will take time - it will reduce the pain slowly and gradually - apparently 1.5 years is good! Once that nerve hyperactivity / hypersensitivity has set in it is difficult to get rid of and takes determination and time. First of all, while you are curing yourself, you need some immediate relief  so that at least you can function from day to day. I found coconut oil soothing. I also got some saginil gel, which is made it Italy from plant ingredients which naturally reduce the nerve overacivity in vulvodynia. Some people find that after a few days it clears the pain completely, some find it doesn't nothing; i was somewhere in between and it reduced the pain just enough so I could bear it. You can buy it online direct from the manufacturer, epitec. You also need to get drugs that work on the nerve from the inside - amitriptyline. I was prescribed steroid cream, but this worked to reduce the pain for a while, then I got a sensitivity to it and it made things worce again. The saginil gel and amitriptyline helped to pain the pain bearable but what cured it for me was western acupuncture, pelvic floor exercises and manual desensitisation (stroke yourself on the painful area, starting with one very gentle stroke, then gradually increasing the number of strokes and the pressure each day - this retrains the nerve she to register touch as touch and not pain). The acupuncture was a revelation, form the first day I tried it my pain reduction was accelerated and I felt the difference after each session. 

    Alos you you need to change your lifestyle. No exercise, no sex, only washing in the intimate area with water (I used coconut oil), no tight clothes - I work mainly from home so I was able to go around all day with no underpants on, just baggy jogging bottoms or a skirt. Nothing should Ben touching that area and making the nerves fire. I also got myself one of those cushions shaped like a donut with a hole in the middle to sit on while i worked on the computer and in the car. I think they sell them for people with piles. I got mine form a mother and baby shop (for women to sit on after they have given birth. Treat that area gently while you are trying to recover. Also, there will be blips - recovery will be slow and steady if you stick at what works for you, but sometimes something will happen that makes it a bit worse again e.g. you have to walk somewhere just a bit to far to irritate those nerves. But the importance thing is to not give up. If you do, you won't get better. It doesn't get better on its own.

    i hope this helps. If you need any more info, I am happy to help.

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    • Posted

      Hi Suki and thanks for the information.  I do have several questions.  How were you diagnosed?  Was your pain only on the outside?  Mine is in the vagina itself.  In addition I am having anal pain like the anal muscle inside.  Did you have that?  What kind of doctors helped?  I am depressed.  I am 71 and feel the rest of my life is ruined. Did you also have vaginal atrophy?   I am on Estrace and it seems it is taking its time to work.
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    • Posted

      After many weeks of the burning pain I was diagnosed by a consultant gynochologist. I live in the UK, by the way, and have private health cover. He prescribed the amitriptyline (20mg) and steroid cream. I was gradually getting better and had stopped the steroid cream as you cannot use those long-term. I actually felt pain free enough to have my smear test - big mistake. After my smear test the symptoms came back full force. I was so depressed. I tried the steroid cream again, but that really stung me. I tried lignocaine and that stung me. The gynochologist said that he couldn't cure me, he could only help me manage the pain. Well, I was having none of that - I was 47 - I didn't want to have to manage the pain for the rest of my life (and no more sex - no way!).  So I did a bit of research and found a consultant dermatologist who specialised in vulval pain. She was the one who recommended acupuncture, pelvic floor exercises, physiotherapy, chiropraction and manual desensitisation - all things that she had found to work. I also discovered the saginil gel (recommended by my GP), which soothed me while the acupuncture did it's work. She also told me to up my amitriptyline to 50mg because they have found that the amitriptyline and acupuncture work very well together in damping down the over active nerves. 

      Having said all that, although your symptoms seem very similar, the location of your pain doesn't seem right for vulvodynia which is not usually internal, it it external in the vulva area - mine was the classic horseshoe shape pain area to the posterior of the vaginal opening (the forchette skin and the perineum). I did not have vaginal atrophy back then (2013), just the vulvodynia. Over this last year I have been getting dryer down there and have found coconut oil (organic, raw, cold pressed) very helpful - you just get a blob of it on a clean finger and insert it - I do that after every time I go to the toilet. I also insert vitamin e oil (400iu) once a day (break an oral capsule and squeeze it out onto your clean finger and insert - I usually squeeze it onto a blob of the coconut oil then insert). Lots of women on this forum have found coconut oil and vit e oil to be a great help. There is a suppository that combines the two - i can't give the name because my message then gets moderated- I pop one of those in when I go to bed at night.

      Recently I have gone completely dry - my GP thinks my ovaries have finally packed in. The oils keep me comfortable but sex is difficult. I tried vagifem but that just made me swell up inside so much I couldn't even get a finger in. Water based vaginal moisturizers either sting me or make me swell up. I am going to try estrogen cream next ... when I pluck up the courage to try again!

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    • Posted

      The first time I tried to post, my message didn't get posted because it had to be moderated (I had put the name of the vitamin e suppository. I, and others, have had this problem before. It is silly because I realise we're endorsing a product, but there is only one such suppository and women with vaginal atrophy should know about it. I will try again - it is Key e (I have missed off the name of the manufacturer this time). There is another product, but it is not a suppository, it is coconut and other oils inserted using an applicator - Yes oil based lubricant. That was really helping me with the intercouse.

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    • Posted

      Suki girl, this is all so massively helpful.

      I have precisely that pain to the posterior of the vag opening. Also dryness. My hormones packed it in 13 years ago when I was 42 and when my HRT is not adequate, these symptoms come roaring back. I was symptom free for about 10 years but switched HRT 18 months ago and am still paying the price. Going back to my original HRT hasn't helped, the tissues are still sore and nerves are still outraged ! 

      Do you think you could send me the name of the consultant dermatologist you saw, who specialised in vulval pain, in a private message? I would really appreciate it. 

      Thank you agin for sharing all this

      Thank you soooooo much 

       

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    • Posted

      Thanks Suki. My vaginal dryness seems a little better. On Estrace, in between tried Yes vaginal moisturizer, and the E suppositories u can't mention. Now in addition to vag pain have anal pain. Very depressed. Good luck with the Estrace.

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    • Posted

      I am so pleased to be of help. I know what hell vulvodynia is and totally believe that we should not have to manage our pain but should be cured. As someone who is cured I want everyone to know it is possible and what helps. I will private message you. And please do not hesitate to ask anything you need to know.
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    • Posted

      Dear Suki girl.... You are a star.....many thanks for all the info.  My first post has been deleted so must try harder not to mention products!  I have ordered the gel you recommend from Italy, and it is now on a well known shopping website in the uk too, and a bit cheaper.... less postage.  I have been searching for a consultant dermo as you  have found, and came up with london guys and a lady dr there.... I wonder if this is who you have seen?

      I was diagnosed nine months ago with pelvic floor dysfunction/spasm.  Since then have been having pelvic physio and acupuncture which has helped a lot.  But am still left with a problem with sitting for any length of time, and burning of the vulval area.   Not sure if has been caused by a body wash used fifteen months ago.  I had six months of trailing round ten doctors none of whom knew what was wrong, three procedures under anaesthetic - all useless.  However with the physio  things are improving very slowly.  Specialist uk cushions help too. One particular aloe vera gel helps and coconut oils.  My symptoms seem very like yours, and vaginitis is also part of the scenario... I am 73. Walking helps, and being upright or horizontal!  I keep gel cool bags in the fridge which help the burning when it's bad.  No knickers or trousers!  I would be very grateful if you could contact me privately re the lady dermo you have found..... Do hope this post will get through, it's the first time I have joined a forum!  To all those ladies following the thread, keep cheerful and a sense of humour..... Meditation and deep sleep apps help a lot to relax the muscles everywhere.  I am happy to be contacted privately about what I have found helpful, if that would help anyone else too.    Thank you so much Suki girl..... I am keeping fingers crossed the gel will help!

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