RPF for Pudendal Neuralgia

I have had chronic pelvic pain caused by the pudendal nerve for nearly 5 years. No reason why I'm only 35 have no children. I have had surgery and 2 nerve blocks and nothing has worked. I have recently had Radio pulsed frequency into my pudendal nerve in London and my pain has gone through the roof I'm in agony. I was exercising before and had managed to become more active now I'm back at the start and in totally agony. It's been 3 weeks and the pain is getting worse. London don't care now they have done it. Has anyone had this happen? Will it subside? I feel suicidal I live on my own and don't really have anyone and can't even get out of bed hardly! I'm scared this is permanent.

30 Replies

  • I'm so sorry that you are having such a hard time. Pudendal neuralgia is such a hard condition to deal with. It's a roller coaster ride of treatments, good phases and flare ups. I had a bad reaction to a nerve block that took me 6 weeks to get over. I have never had RPF, but i don't believe the results are permanent so I hope your flare up will calm. Failed treatments are so hard to deal with. Take care of yourself, be kind to your body and rest and recouperate. Depression is s problem for me when lying in bed a lot, but keep chatting to us. We all understand how hard it is. 'This too shall pass' is my mantra, keep telling yourself this because it will. The next up is just round the corner on the roller coaster, just hang in there. Take care. Xx

  • Thank you Suebooo I'm just so upset I was managing gym classes before I had this procedure after 4 years of doing nothing. The consultant promised me it wouldn't cause a massive flare up and said it would help my bowel and bladder function which are both a problem they don't work. Now my vagina is being cut and stabbed by a hot crawling poker. I'm so upset. I was just about to start back at work before this procedure after being off for 4 years. I'm so angry at myself for letting them do it

  • If you have recovered enough to consider work once, you can do it again. Keep hold of that hope. Pain control is important whilst your body recovers. Take care and keep in touch. Xx

  • Gosh Kate :(. I was warned it might cause a huge pain flare, but only a few weeks. Also, that it might not work. My Dr told me that he has to go through the warnings like nerve damage etc for protocol, but said categorically that it doesn't happen and wouldn't happen - he explained that there are risks with straight radio frequency tho. He was sooo positive and I was sooo excited. He has been useless and reluctant to talk about anything other that medicating ever since. I haven't seen him for some time as it has been almost traumatising and feel he is useless, like you I can't believe I made the decision to go ahead with it, but was so desperate for help at the time & was sold the impression nothing could go wrong except it not working.

  • I had the pulsed RF into the pudendal nerve about a year ago. It also caused a big pain flare for me. It lasted about 6 months before it settled down.

    I also had extra sciatica pain along with it.

    It did settle down..but it took about 6 months. I required oxycodone for the pain levels I had, it was that severe.

    When it happened, I was wondering if it was ever going to settle down as well.

    Hang in there, it's only early days....3 weeks isn't long so it could even help yet, I would still remain positive for a few more weeks before you know if it's going to help or not.

    I am in the same boat, 37yo and had this pain for about 4.5 years now. I was in a relationship but chronic pain changed all that, so I know exactly how you feel.

  • Hi Pafen

    Thanks for your reply. I hope mine doesn't last 6 months I don't think I'll be here if that's the case I can't stand it again. No one around a me understands and all my friends are married with kids and I'm just on my own. I'm lucky to have my mum but she's sick too and I'm causing more stress. I hate doctors I feel like we are just experiments for them all the time. I have no follow up or any one to turn to at the hospital I left 4 messages and it took a week to ring me back and all I got was it shouldn't have done that so I went to my GP and he palmed me off with diazapam great! I take so many tablets I feel like a drug addict

  • I know all about that when you have a lot of pain following a procedure and the doctors don't wanna know you. The same thing happened with my Pulsed RF and it was getting towards Christmas. All I got was the specialists receptionist and they directed me to see my GP.

    What would the GP know with something as complex as pudendal neuralgia pain?

    If only I knew about all the risks before some of the procedures I had. Looking back I probably wouldn't have had many at all. But we have to take these risks because we want to get better!

    You might just have to wait for things to settle down. I hope the diazepam helps in the meantime.

    The pulsed RF stopped me from exercising for many months so it took a long time to get my strength back.

    I use a pelvic floor therawand quite regularly but I wouldn't suggest that till things settle down more.

    My pain is left sided.

    I had a 3T MRI which showed no entrapment.

  • My pain is right sided. I'm seeing my Physio next week she is amazing but I won't be having any internal work I'm in too much pain.

    I know GPs are useless they don't know anything about this. I'm not keen on taking the diazapam. Just feel so depressed can't deal with all this again

  • Are you taking anything at all for pain management?

  • Yes I take pregabalin, nortriptyline, tramadol, ibuprofen, buscopan

  • Ok I can understand now that you wouldn't want to add diazepam into the mix as well.

  • At the moment all I am taking is amitriptyline to get to sleep at night...

    Normally I take some tramadol regularly but I am trying to see if the opioids have been contributing to my chronic pain, hence the break.

    After the pulsed RF I was on a cocktail of oxycodone with naloxone, pregabalin and amitriptyline.

  • Had surgery 9 months ago and get flare ups

    I find sitting in an ice bath horribly cold but it does seem to settle things down a bit. This is now in my daily routine.

    My problem is left side only and I am male and my probstarted with an injury and took years to deteriorate. Hang on in there, avoid sitting and walk as your main exercise seems to work for me. Find your way to defy this tyrant and believe in your true worth.

  • Thank you for your reply. Did you have decompression surgery?

  • Yes, with Mr Wong at Southmead in Bristol. It was no magic bullet. However I do get good days now.

  • I had my surgery with Mr Dixon

  • Has the surgery helped at all?

  • No made me worse. Wasn't decompression had a rectal prolapse repair and endometriosis removed. Mr Dixon said I had a prolapse but I'm not sure I did never felt like I did and no other doctors found I did and I saw loads before having it. Now I also have massive bowel problems and abdominal pain and distension just something else to add to the PN

  • I'm almost 4 weeks Post PRF Treatment. I also got so much worse afterwards. Apparently it takes about a month to feel if it has worked. And it only works in 1 out of 3 according to Prof Vancaillie in Sydney who did mine. Hang in there!

  • Has it settled down at all for you? I just want to go back 3 weeks

  • Mine was done on the Sunshine Coast in QLD. I also tried some Botox injections at Brisbane.

    They say the next step is a neuro stimulator but I don't like the idea of an implanted device.

  • I am so sorry about your procedure not working. I am due to have cryoablation of the Pdendal Nerve at its inception in the Alcocks Canal. I am praying to God this is a major shift in my horrendous pain after nine years. The dr has seen almost full recovery with everyone. He is only been doing it a year and a half and has been getting great results. He actually does a pudendal nerve block first to see if you respond well. If you do then he schedules the cryoablation for the next day if you are coming from out of town. If you are in or near Atlanta he schedules two visits. My cryoablation is for We'd. This will be the third attempt as he was called to emergency surgery twice in two different dates with me. I anxiously look forward to it and will keep you all informed. I am 64 and work full time so I pray God gives me His power and let's me be healed. I can go into so much more but am so tired right now and in pain I am going to lay down. My hopes and prayers are with all of you. It is a dreadful illness and causes so much emotional turmoil which is not good. God bless and I will keep you all in my prayers and updated.

  • I'd be interested to know how this works for you. I know of some people it's helped from what I've read online and a friend where it caused a big flare up.

  • Hopefully it's the former. I am trusting that it is. Thank you for letting me know. He uses a CT machine so can see exactly where the nerve is. Most promising thing I have heard about in nine years.

  • Yes and there is a few articles online about it where it has worked which is positive.

  • Hello. How long ago did you have the ablation. I too got worse before it got a little better. But my last time didn't work at all it appears. I'm sorry you are suffering. I'm with you there. I pray for all of us that we can have pain free days soon. 😔 Deb.

  • I had it 3 weeks ago but I seem to be getting worse each day

  • Thank you everyone for your replies. I will let you know what happens. Just hopes it dies down soon

  • Please do not give up. Before my first nerve block I was in your state. No one can believe how painful this can be except those suffering. I kicked the wall everywhere I went and was constantly swearing. My whole personality was changing because of pain. I had to try to keep my composure because of my children and work. But it became more difficult over time. I wanted to lie in bed all day but I would get out and walk a mile or two and make myself work and stay social. Seeing my three year old niece would lift my spirits. My heart goes out to you all . I have had 3 nerve blocks and had some relief. A week ago I had Radio Frequency Ablation and the nerve pain has almost disappeared. I can feel the tightness along the nerves. I do have a ball to the right side of my perineum changed a little in shape but still there. I have a new symptom of numbness in my vagina. I cannot insert a tampon. I was having pain if I would try to have intercourse so I stopped. My divorce papers were ready and then my husband finally understood. When I am examined I do not have pain until the therapist or Doctor gets close to the nerve intravaginally and rectally. Mostly intervaginally. I have rectal spasms , so often I cannot fully eliminate unless I squeeze that sphincter and then fully relax again and blow like through a straw. It's terrible. But I am not giving up until treatment is finished. This all started within an an hour after anal fistula surgery. I will go for intravaginal injections Oct 3rd and I will send an update. I also still think I have an infection. They need to find this infection. It's frustrating!! I am keeping the faith! I have too much to live for, we all do. Hang in there.

  • Hi Kate! I am really interested in how you are getting on?? I really hope you have made improvement. I also have pudendal neuralgia. I had nerve blocks and pulsed radiofrequency of 3 nerve branches including the pudendal not too long before you - with significant complications. It is the biggest mistake of my life, but nobody was offering any other help besides medicating and that wasn't helping much, plus it seemed so promising and a much better option than being on more serious medication long term. Did you have yours done at a reputable clinic in London?

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