Bilateral pudendal nerve blocks - any advice please?

Hello everyone

I am due to have bilateral pudendal nerve blocks and ultrasound guided injection to cutaneous nerve - in London very soon. I am a little apprehensive as I was told it may/may not work and for what duration or time no one knows, aswell as the possibility it could make things worse.

I ended up in this situation due to bodged surgery originally and I am obviously really keen to avoid making things any worse through more medical procedures.

Please share any experiences you have and the effects of these blocks, good or bad, i would really appreciate any advice. I understand they could help and am keen to try them but also nervous regarding any more intervention.

Thanks in advance.

28 Replies

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  • Hello Pudpain, I am not an expert on this but in the past have had nerve blocks in London too, to the pudendal nerve, cluneal nerve and obturator internus. Unfortunately they did not help me, there was no pain relief, even on a temporary basis. Occasionally nerve blocks can cause a slight pain flare up for 48 hours or so due to their invasive nature - but if I were you I would feel relaxed about the procedure and go in with an open mind. The procedures, from my own experience, were really nothing to worry about. Best of luck and please do keep us posted.

  • Thanks for your reply StevenM, it's reassuring to hear from those who have these nerve blocks. Did you have them at NHNN? And do you mind me asking how long ago you had them? I am hoping for some pain relief but very worried about the possibility of making it worse. Like you say, probably good to try but so many people seem to have no relief or worse pain which worries me. Thank you for your advice.

  • Slight possibility of temporary minor local irritation, but generally well-tolerated. Is someone driving you home?

  • Hi, yes someone is driving me home. Thank you for your reply. Do you mind me asking..Have you had similar nerve blocks?

  • I live in the US and i have recently had some injections done due to sever lower back pain, from moderate to severe disc degeneration and a cyst on my spinal cord, the pain going down legs and legs and feet going numb to the point I had fallena few times due to not being able to feel them. Injections are a hit and miss but the pain doc i have seen has been wonderful in explaining everything. The first i had was a sacroiliac injection, which did not help at all. The next was an epidural injection which decreased the numbing a lot but did not totally take the pain away. I just had an injection done in 2 of the nerves in my lower back left side, the l4 and l5. Within hours some of the intense throbbing pain has diminished. They say it can take up to a week to fully get in your system. There are soooo many nerves, muscles and so forth running through your back that lead to all points of the body. There is never a garuntee that it will work but through trial and error i am on the road to recovery. Trust me it is very scary to think of needles going in and near your spine and using xrays to guide them. I have heard people get 1 shot and it works for months and even years depending on your body. Others say it inly lasts a couple weeks. In my case it is possibly a pinched nerve issue due to what i have going on and with my issue if i end up needing multiple injections some people have just had the nerves cut to stop sending the pain signals. Long story short nothing is ever a garuntee but the possibility of it working and giving some relief is worth it! Im hoping it lasts a ling time but being young, 30, they did nit want to do any surgery on my back as that is hard core. So we are trying diferent routes. I am satisfied so far, i underatand it is not a garuntee but there is an upside of it working. Even if it works for a while, having that relief is worth it for that short time. Good luck!

  • Hi, I haven't had the block you're talking about but I have had several the guided through lower spine Ganglon impair and hypogastric nerve blocks which never helped at all. I'm now getting pudendal nerve blocks (had 17 of them) but not guided, just Kenalog and lidocaine injection, it helps a little for about 4 weeks. I agree with all of the other folks that have responded. Sometimes it's worth just trying these things and seeing if it works for you. Because everybody is different. Good luck to you, I hope it does give you relief. 😊

  • Thanks for your reply Ladydidi, I'm wondering where you are? I'm not sure if the pudendal nerve blocks they perform in London are guided or not? Guessing prob not as it was only the cutaneous nerve block that stated ultrasound. Thanks for your advice and bedt of luck to you also.

  • Hi , I'm in California. I agree w guy below Jon kabat zinn book is excellent, you can also check out his u tube videos. Take care X

  • Mine was done in Nantes and was bilateral, pudendal in ligaments and also cluneal nerves. Mine gave complete relief for 24 hours. In Nantes they do not use steroid as they say it does not help. My blocks and flights were probably cheaper in France than UK. I had a pain flare for about two weeks after. The procedure was not pleasant as Dr Rioult injects as close to the nerve as possible, then checks on ct scanner, then comes back and tweaks needle then injects more, that hurts a bit. I had no sedation. I only had the blocks done once, I read that there were many people who had them repeatedly and they became worse.

  • Hello i am due to go to Nantes next Month for the same thing, you don't say if this has helped you in the long run. I didn't know you could Have increased pain from lidocaine only

  • Thanks frodofish, very helpful to hear your experience. I am worried about making things worse and it sounds like on the whole they are not that effective or very short lived pain relief..still in a bit of a dilemma over what to do! I wonder why they continue to offer them if people experience worsening symptoms? I'm getting mine on the N H S so not sure they will be the same as in France? Thanks again for your reply.

  • Would you feel comfortable sharing what kind of surgery was botched? And, perhaps what kind of pain you are seeking treatment for?

  • It was prolapse repair and other gynae surgery that went wrong causing pudendal nerve damage which is the pain I have lived with since surgery.

  • My blocks only helped for a short time, I was told they could work for 4weeks,in my case not. My increased pain was for two weeks. People who have had repeated blocks in the UK have reported increased pain generally and eventually stopped and told to live with it.

  • Thank you for all the replys, really helpful to hear others experiences. I'm still in a bit of a dilemma..just with regards to the possibility of increased pain, possibly permanently.

    I wonder why these blocks continue to be offered when so many report no pain relief or worsening pain?

    Has anyone had any blocks done at NHNN, queens square, London?

    Wish there was a clear cut answer but I know there never is with chronic pain and nerve damage! Just worried as it was an nhs surgeon who caused this and the thought of anyone making it worse terrifies me!

    Thanks again and if anyone has any further advice it would be gratefully received!

  • Hi,

    I have bilateral pudendal neuralgia as well. I live in the states and had x-ray guided bilateral pudendal nerve blocks done under sedation and experienced no pain during the procedure. I experienced approximately a 24 hour time span of complete relief. My pain level always reached an 8 or 10 by mid-day, so I can't really say they made my pain worse. The reason they do these blocks is to give you a conclusive diagnosis. If you receive relief, even short term, they know they have pinpointed the right nerves that are causing the pain. If you don't receive relief, they know you need to keep searching for a cause for your pain. It is my understanding after reading much about this condition, very, very few receive long-term relief from the injections. It is mostly a diagnostic tool. I, like you, was very afraid of an increase of pain, but felt it was worth the risk to get an accurate diagnosis. I went on to have pudendal nerve inter-stim implants last year in April. That procedure has given me much relief in helping manage the pain. I don't know if that procedure is available in your country. There are only two doctors in the states that perform this procedure. I wish you the very best in making an informed decision and gaining your quality of life back.

  • where did you have the xray guided nerve block , i live in Davenport, IA. who is your surgeon? please replly

  • Hi Pieper,

    Sorry it took me so long to respond. Here is the information you requested:

    Dr Kevin Benson

    Sanford Female Pelvic Medicine & Reconstructive Surgery Clinic

    Address:

    1500 W 22nd Street

    Suite 402

    Sioux Falls, SD 57105

    Phone:

    (605) 328-8750

    Hours:

    M–F: 8:00 AM–5:00 PM

    Dr Benson and his staff are caring, compassionate and skilled in pelvic medicine. He confirmed PN with xray guided nerve blocks. He is one of two doctors in the US that does neuromodulation at the pudendal nerve to help manage symptoms. It is not a cure, but since having the surgery, I would say I am 50% better most of the time. That may not seem like much, but when you are rating your pain a 10 on a daily basis, a 5 sounds pretty good. I still don't sit anymore than necessary and I am on a small amount of hydrocodone. I would say the interstims helped me get some quality of life back again. It's not perfect, but I have no regrets. I hope this information helps you in your journey. I highly recommend Dr Benson and his team. If I can be of further help, don't hesitate in asking. Best Wishes.

  • I have an inter stim for bladder issues. Is that the same? I live in USA too, can these nerve blocks be done under sedation then w no problem? I agree, i think they re done more as diagnostic tool than pain relief.

  • Many doctors implant sacral interstim devices; I did the trial surgery for that one with no success. Then my gyno referred me to Dr Benson who implants them directly by the pudendal nerve and the trial was a success. I don't have bladder issues, but I do have bowel issues. My blocks were done under very light sedation. I don't remember anything about the procedure. If you have PN, sometimes the injection will cause a flare. There is no guaranty one way or the other.

  • Hello pudpain, in answer to your questions, I had all of my nerve blocks carried out at Queen Square under Dr B approx. six years ago. As they were not successful, the eventual outcome was that I was subsequently fitted with a sacral nerve stimulator five years ago, again by Dr B at Queen Square. This has proved to be most helpful, although it is not a magical cure. Are you under Dr B? All I can say is that you should not worry about the nerve block procedures themselves as based upon my experiences they were in no way uncomfortable - I was heavily sedated and knew nothing about them. A couple of them left me with 24-48 hour raised levels of pelvic floor pain, but that was all. If the blocks help you then that will be a significant clue in how to treat you next - if they do not (as was in my case) I feel sure your consultant will then consider further options and remedies. Unfortunately, this condition seems to be a condition for life and the key is to seek ways of managing your pain. I meditate twice daily and practise gentle stretching/yoga exercises and would also recommend that you read Full Catastrophe Living by Jon Kabat-Zinn - arguably the best book ever written on dealing with chronic pain., Good luck!!

  • Hi my husband had never blocks 3years ago it did not work fore him by the time the doctor found out what he had it took 21/2 years and now it's been 5years hear in Canada they do not operate on PNE .how long are you suffering from PNE?.

  • Not sure I can advise but I have been offered a steroid nerve block into inferior cluneal nerve in March. I have been suffering with this nerve pain for 6 years after surgery and I'm very keen to get off Gabapentin, yuk side effects but it's all I've got. My pain consultant has said that the block will be 30% theraputic and 70% diagnostic. I'm going for the 30%.

    I'd be very interested to know how they diagnosed the specific nerves.

  • Hi,

    I have had pn for seven and a half years.

    I had five nerve blocks in London, and was left with chronic muscle spasm which took me years to overcome. If I had my time again I would either restrict it to two, one x ray guided, one ct guided or go directly to Nantes where I believe they have greater expertise.

    Lucp

  • Thank you for the replies. I am also uncertain as to how they determine which specific nerves they need to block and surely the injection itself travels through various different nerves once inside? If so how do they know for sure that they got the right area? Does anyone know what they use in the nerve blocks at NHNN in London? I've been unable to get hold of them at the hospital to ask about it all and am due to go up for them this week.

    Thanks for the info StevenM. I am sort of 'under' Dr B, aswell as another consultant - combined approach I think they call it, although haven't actually seen him, have seen other pain doctor and gynae doctor (aswell as bladder and bowel specialists). I have listened to Jon Kabat Zinn before - very helpful. Do you know if they do the pudendal nerve blocks x-ray guided, CT guided or neither at NHNN, Queen Square? They haven't really told me anything.

    Thank you lucyP, really helpful to hear your story. Do you mind me asking did you have your nerve blocks in London, Queen Square? Was the chronic muscle spasm a direct result of the nerve blocks? This is my fear exactly, that I could well exacerbate things. Perhaps like you say, just go for one and try to avoid any further blocks. How are things now for you?

    I have 2 young children and already find myself really limited physically with what I can do with them and for myself, I can't bear the thought of making things worse. I've had the nerve damage damage for 2 years following surgery and don't really want to spend the rest of my life relying on pregabalin or any of the other horrible side effect inducing meds that I've tried! It's really helpful to have these discussions on this forum though, the only place it seems to meet fellow sufferers and other people who really 'get it'! Thank you again for taking the time to reply, much appreciated.

  • Hello again pudpain. I am not 100% certain in what I am about to say but firstly yes, Queen Square do, I believe use x ray-guiding techniques for pudendal and cluneal nerve blocks and CT guided for obturator internus.

    I say this because when I had the latter they took me to a different part of the hospital and used a large machine which looked something like a CT scanner....but I may be wrong. Also, my understanding is that is the whole purpose of using x-ray guiding, so that they hit exactly the right spot. I do not think it travels through other nerves. They simply inject the nerve they think may be causing your pain and if that does not help they may subsequently try another nerve - it is a process of elimination.

    What I have learned over the past 12 years that I have suffered is one's coping strategy is really important. I have lots of bad days but you have to try to train your mind and attitude. Another excellent book is Mindfulness For Health by Vidyamala Burch. check out this Link:

    breathworks-mindfulness.org...

    One of the more important aspects she teaches is that if one suffers from chronic pain, the natural reaction is to try to push it away, fight it, reject it....this in itself causes more frustration and pain. The technique is to be kind, compassionate and accepting of the pain. She goes on to describe Primary pain and Secondary pain. Interesting reading.

  • Hi,

    Yes I did have my nerve blocks at Queens square, done by Dr B.

    The first three were X ray guided, this were at the level of the ligament grip,where they feel many patients have compression.

    The latter two were done with c t guidance at the site of alcocks canal.

    It was the injections at the higher level that gave me chronic muscle spasm, and unbelievable hypersensitivity.

    I wish I could be more encouraging but I am being honest.

    Of all the treatments I,ve had over the years, including surgery, the thing that has given me the most improvement is David McCoid restoritive exercises. However what helps one person is different to the next. I turned down a sacral stimulator last year as I have improved so much since doing David,s strechers.

    I wish you all the best and hope you find something that helps.

    Lucyp

  • Hi there, I am two weeks out from my second pudendal nerve ablation. I have had several pudendal nerve blocks as well. In my experience the nerve block lasted only about a week. I do have the damage from transvaginal mesh and mesh removal which complicates my response from the blocks. I think it's a good idea to research about all the nerves in the pelvic area, not just the pudendal nerve, there are so many nerves in the area.

    I did have some pain after the blocks that was helped with ice-everything seems to settle down after a few days. I hope all goes well with your procedure! :)

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