Vulvodynia / pudendal neuralgia

Hi. My names Tyler.

I have been very badly suffering with what I thought was 'vulvodynia'. This is a chronic illness which involves severe burning pain in the vulva region. I've been suffering with this for 7 years now since I was 16 & can for sure say it has ruined my life. & me as a person. Mentally & physically I'm very damaged because of this. I have attempted to take my own life 4 times because I cannot go through this pain and suffer like this every day on my own anymore. I am still in this mind frame and desperate for help.

I have a severe addiction to morphine because of the pain. Nothing seemed to help with the pain (tramadol, cocodomol) so doctors put me on a constant prescription of that. I have been on it for 5 years but taking it every day for 2. I'm very weak and feel the morphine is doing a lot of damage to me in every which way.

I've now discovered that with a lot of the other symptoms I suffer with I come accross pudendal neauralgia on the Internet the other night & was acrually crying as I was reading all the symptoms of it as they relate to what I suffer/have been suffering with for a very long time In such confusion of what the hell is wrong with me.

This is what I have!! I am awaiting my referral at the pain clinic to ask about treatment and what to do to get Myself better and off the morphine before it kills me.

Please can any one give me as much advise/information/help on what to suggest/do when I get referred. I have seen a few posts about nerve block injections but not to sure if it's worth the try/If it even works??

Thank you for any comments.

Tyler.

8 Replies

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  • Hi Tyler93 I am so sorry to hear of the terrible time you have had for such a long time. My advise is make brief notes of when and how your symptoms started. Where they are. What medication you have been on and how you need help getting off the morphine. Ask how the PM Specialist can help you to do this. The pain management specialist will examine you. Discuss the nerve block most likely to help reduce the pain to the area effected. You can google ' Pain Management, Nerve Blocks ' The injection is done under CT guidance and is injected along side the nerve effected. The injection is a combination of cortisone and lignocaine. The cortisone reduces any inflammation around the nerve and the lignocaine numbs that area. The effects may last hours, days, weeks, months. so don't give up. Please ensure that your pain management specialist gives you a plan on who to contact if your nerve block is not giving you the pain relief you expected. This may mean they have to review where they put the nerve bock next time. You may find that your nerve block is very successful and you may just need to go back every month - 6 months depending on how long the nerve block lasts. I would advise that you find out from the pain clinic in advance if there is a Pain Management Specialist at your PM Clinic who specialises in the Pudendal Nerve and ask for an appointment with them. Also ask the PM specialist about the reduction in your morphine meds to help you come off those. You may need a contact number for that too so you get the support you need. This treatment I hope will eventually turn your life around so that you feel much happier in your self. You are still young with plenty to look forward to. Please reach out for specialist help and please don't suffer in silence any more. We are always here if you need any further advise. Take Care and Good Luck.

  • Tyler,

    Believe me, a lot of us can relate. The best suggestion I can give you is to go to the website pudendalhope.info. It is a great website with everything you need to know and there is a forum there, as well. Also a list of doctors around the world who specialize in pudendal nerve pain.

    By the way, I take methadone for my pelvic nerve pain. It really works for that burning, nerve type pain. It also hasn't given me many side effects. You might know that it is also prescribed to help get people off of other drugs like narcotics or heroin. Maybe something to research and think about. Unfortunately, not all doctors prescribe it because they are ignorant about its use as a pain med, so that's the one issue I've experienced.

    Good luck and don't ever lose hope, whether it's this pain issue or anything else. Because I've seen people's luck change in a matter of a day and their whole life turned around.

  • So sorry that at such a young age you are suffering like this . I am 74 and have had this pain in my rectum for 5 years. Almost as bad as the pain is the ignorance of the health professionals on how to help. In the beginning of my journey i was told it was'in my head' It might help for you to say which country you are in and which region so that more local people can give you more precise info. on where best to get informed help.

    I wish you every help yiu can get. Do not give up. If we keep hammering on the door someone will eventually open it to a better future for all of us.

    Take care

  • Tyler, I'm so sorry that you have been suffering so much. I also have been diagnosed with vulvodynia, that later appeared more like pudendal neuralgia. I've come to the conclusion that the name of the condition doesn't matter. The pudendal nerve is the main nerve to innervate the genital and anal regions, so it's likely that the pudenal nerve is involved. Ive had this condition for at least 8 years and because of lack of knowledge in the medical profession I've done a lot of research into pelvic pain, neuropathic pain etc. It sounds like there are a number of factors affecting your condition, not least the emotional distress it is causing, which can make the physical pain even worse. This is a very isolating condition and it is no wonder that it has affected you so badly. I just want to say that there is hope, but it does require a lot of patience. I'm glad that you have been referred to a pain clinic, as they can hopefully link you in with various services, such as Psychology and Physiotherapy. Nerve block injections might work, but in any event, I would suggest that you ask to be referred to a pelvic floor physiotherapist, who could assess you for over tight pelvic muscles. The chances are that they will be tight as a result of having to cope with so much pain and this could be causing nerve compression. It might sound silly, but I've learned that even things like meditation, abdominal breathing, or just doing something I enjoy, such as listening to music or going for a walk can help to manage the pain. These things can help to calm the central nervous system. Please don't give up. We are all here for you. Good luck.

  • This is sad for one so young ,Im on the PN and V V site also Coccyx ,maybe go on those also Tyler ,it was a lady called Judy here on this site that directed me on to the PN site ,Im so glad I did ,more info from these sites does help ,not cured it, but in getting ideas how and what to try , plus what not to . I've had this now for 10 yrs Tyler ,Im in the older generation age group .

    I hope the Pain Clinic can help more . I do find after a BM its really bad due to pressure , on all nerves to do with the PN nerves and the inside Gyne area . Your not alone Tyler . Where are you living ? Stay talking main thing to do . This condition only those with it can understand what your feeling daily .. It crosses all ages and sexes Tyler . Hold in there . X

  • Definitely go to Pain Management Dr. I had two Pudental nerve blocks but they did not work for me but understand some people have gotten relief.

    I have tried Gabapentin which is a diabetic nerve pain medicine but it did not help I do get relief from Lyrica which is another diabetic nerve medicine it stopped the burning and tightness unfortunately my insurance does not allow me to fill prescription but about three months without going into Medicare "donut" hole and then I have to pay full price which is about $600 for a 30 day supply

    My Pain Management Dr is working with me by providing samples this is only drug I have taken which helps Don't expect to get relief from all symptoms though I still have the pressure and a few spasms even on Lyrica wishing you the best Rocky68

  • Tyler,

    I suffered for 1 1/2 years with this nerve pain. It is like a route canal. Medical professionals underestimate this type of pain. Go for the nerve blocks. Even if the first one doesn't give complete relief. Go back for a second nerve block. Don't hold back when you talk about the pain. When you make your appointment let out your pain and cry. No one should suffer like this. We all understand how you are feeling. I am a strong person. This pain took me to my knees. I went to many doctors and they couldn't tell me what was wrong. I didn't stop until I found the right doctor and hospital. I also have a physiotherapist. A physiotherapist will help you get to the route of the problem.

    I started fieldenkrais yoga this week and I swim and walk. It's important to get the pelvis muscles to relax. There are free meditation programs online. You focus on your breath. Deep breathing helps to relax these muscles. There are exercises to do in the pool. A good book to read is "nerves on Fire". Michelle Kenway an Australian physiotherapist on utube shows how to have a bowel movement without straining. Any straining of these muscles makes things worse. I can tell you the pudendal nerve burns in my rectum, labia majora, and I feel like I am sitting on a ball. Understanding the route of this nerve helps to understand what is going on. My pain was severe prior to the nerve block. My breathing was shallow. I was sweating buckets every night and my heart would flutter. Things are improving now. I do not take medication. I had two nerve blocks. The pain clinic will help you.

    You will smile again. Keep writing and let us know your progress.

  • I am in to my 14 th year with the pain . It's caused by stress . If you look back to when it started . Something happened . And you your stress caused your muscles tighten up in the pelvic floor. The more you stress the more pain you get . So you take and the pills and nothing helps .that causes more stress .

    I have been there and gone through.what you have done. It seems draft but think about this. I hope this helps . Take care

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