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To block or not to block…

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Healing at Boboli Gardens (Porcelain Museum) FlorenceBlock!!! Absolutely, completely, totally but only if you know where…

I have to stress this post completely relates to my condition and my personal issue with Pudendal Neuralgia. I also have to state that while I document my treatments and their effects it is difficult to know whether the effects will last. That also explains why my post is written so much later than my first nerve block (Dec 2011) and will end with ‘stay tuned’.

December 7, 2011

If you’ve been following my story then you’ll know by 2011, four years post accident, I had discovered, what I’m quite sure is, the second main culprit of my injury (the first being a nasty pelvic ligament), the Pudendal Nerve. A sequence of events found me in Dr Peter Courtney’s hands who suggested we block this nerve (bilaterally) and also inject both Sacro-Illiac (SI) joints with some cortisone as they were quite bulgy, especially on the opposite side of my injury (overworked poor darling!).

Nerve blocks affect us differently but the trickiest part about the Pudendal Nerve block is that it is quite painful and ideally requires a full anaesthetic which means the blocks must be a minimum of 12 weeks apart. So if my nerve block didn’t give me relief it either meant we missed the spot (hardly unlikely in my case) or that this treatment wasn’t going to work for me. I didn’t get 12 weeks of complete relief but certainly it reduced my pain and I had many moments of total relief and some random full days too. As documented many times with this condition, treatment isn’t just about relief, it also provides more detail about the issue and this becomes a guide for the next step. It’s like taking mini steps of progress and it really feels fabulous, I feel as though I gain some control, I foresee future options and ultimately, I regain some hope. Without this I’m travelling blindly.

The main aims for a nerve block are pain relief, diagnosis and obviously a cure. Cure happens, research tells us, if the block gives long-term relief and the nerve relearns how to behave during that time (or as I prefer to believe finally gets its sedative, has a long rest and recovers).

I feel quite lucky to be tuned in to my body and able to explain how I’m feeling and what pain I have and where. During this first block I noticed the rectal branch of the nerve was not affected so sitting back, completely on my behind with my back to a chair (not supporting my upper body on a table or my hands) would trigger the pain immediately. I’d feel a heat begin, a zinging then eventually I’d have the flare up. I explained this detail to Dr Courtney and it gave us a huge lead for my second nerve block…

April 18, 2012

I began to really struggle 12 weeks after the first block and even during that time I had a few flare ups. I wondered if my implant perhaps had interfered with my nerve block as it’s known to cause pain if you keep it on whilst the pain is at a low-level (yes, try to figure that one out!!) By the time I realised my nerve block was well and truly wearing off I was at the 14 week mark, and having been very excited with what relief I had, Theo and I booked a holiday to Italy. Thankfully the brilliant Dr Courtney was able to fit me in for another nerve block at the 19 week mark which was exactly two weeks before travel time. Why am I mentioning the holiday? Because I believe a nerve block needs support, it needed me to get out of the pain routine and team it up with as much distraction as possible… oh and a little bit of pain medication in the form of Endep (not the mammoth amounts I had previously tried that were horrendous). I felt my brain would freshen up, have a new shot at life and not have to face my day bed, aids, daily pain routine etc etc. I set off to live a dream in hope distraction would bring a positive change and another step forward. Ok I’m lying, I was hoping for a complete cure so that I could return to my life after a brilliant Italian escape and work 9-12 hour days again while preparing a new exhibition and doing my yoga four times a week. (Sorry, went off the track a bit there… where was I?) Yes, nerve block time, I’m talking to Dr Courtney.

So Dr Courtney’s brilliant idea was to try to block the rectal branch of the Pudendal Nerve which apparently is quite hard to get to. Next I heard and remember was a blur like this: “longer needle… zzzzz, is it here… zzzzz, what about here… zzzzz, and now..?” oh my God that kills!!!!! zzzzz, “We’re going to roll you over to the bed now Soula” perhaps it’ll fix me if I fall off… zzzzzzzzzzzzz… wake up blissfully on my back…. honey I’m starving… zzzzz…. yuum, I feel great, let’s go home!

I’ve returned from my Italian holiday, Dr Courtney certainly hit the rectal branch of my Pudendal Nerve (right side) and I have had much relief again. But this time, I began Endep, just a 1/4 tablet every second day, working my way up through our holiday to 3/4 per day (and more dopey unfortunately!). BUT my implant was off the whole time. I also picked up a miracle new tip while travelling. I am at ten weeks post block with low-level pain and although this is with limited capacity I am happy to say overall my ability has finally had a step up.

So if you’re asking me to block or not to block? Today, I’d say 100% block! But… stay tuned!

 

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  • Debra

    Hello,
    Recently the young lady reported she was going to see Dr. Prologo. I was scheduled for him and had my entire trip booked including my airfare and hotel. My insurance wouldn’t cover the procedure. I was wondering if you could keep us all updated on your status because the office wanted me to pay out of pocket for the nerve block and the cryoablation before I even came for the procedure or at the time of the procedure. They wouldn’t even fight with my insurance deeming it medically necessary. They said I would have to do that. I did the Best I could , even though no doctor does this in the New York area the insurance still would not cover it. So I was out all that money for the airfare. I’m willing to try again if his results are still great.. God bless and I hope you get some relief. Thank you
    Debra 🤙🙏🌹

  • DonnaG

    I have had pain for the past 4 years. Had a total hysterectomy with a mesh put on the bladder due to it falling. Thought pain I had before surgery (PN) would end after recovery only to have burning pain return after 4 days, So back to trying to find out what is causing pain. Pelvic specialist who did operation says she is stumped and suggest I find another doctor. Do you believe that. She didn’t even try to help me on that. This is a Philly trained doc who as I believe now just wanted to do a surgery and that’s it. So I found a doctor in Bethlehem Pa who was very good. He did a block into what used to be my uterine area which helped for about 2 weeks then he put me on Lyrica 75 mg. twice daily. After about 2 week that started to help but never took all the pain away. Went from a 9 pain to a 3-4 daily. At least I did get some relief. Didn’t want to be on the Lyrica and tried with help of my GP to slowly get off but didn’t work and now I am on it again. Found another Philly doctor from Jefferson and he ordered a real powerful MRI which showed that I have a spur in the Alcocks area that is right up next to the Pudendal Nerve. He ordered a block by a radiologist that he says is very experienced and that he trusts. Have my first one scheduled in 2 wks. I’ve had lumbar blocks before one worked one didn’t then had to have L4-5 surgery. That turned out good (14 yrs ago). I do know that I can’t live with this burning pain. No sex for the past 4 yrs and I can say that I have the most understanding husband on the earth. Without him I don’t know where I would be. So that’s my story. I pray each day for myself and for all those out there suffering with this horrible pain. It really keeps you from enjoying life to it’s fullest. My only advice is keep the faith and keep busy so that you can’t have too much time to think about the pain. Prayers,
    Donna

    • Sedona

      Hello,
      For all of us who suffer with PN please read this link about Dr. David Prologo at Emory Hospital in Atlanta, GA. My Urologist diagnoised me with interstitial cystitus – said he was 100% positive I had it. I received so many treatments including a bladder pacemake that I feel like a science experiment. No treatment has worked for me which lead me to believe I do not have IC. PN mimicks bladder/IC symptons. After suffering for 1.5 years I found Dr. Prologo and hopefully next week he will change my life. I am doing a nerve block first and then if that is successful I will do a cryoablation to permanently end my pain. Please read the link below to see if this is something that may help anyone out there suffering with this type of pain,
      http://www.blogaboutpelvicpain.com/?p=2560

      • soula

        Thank you Sedona. I have often had comments about Dr Prologo. I hope you report back your pain free status very soon.

  • Debbie

    Hello,
    Thank you for your site. I have just had my first pudendal nerve block yesterday one to each side. I am pain free for 24 hours now but I am a little nervous . I am completely numb and wondering is this normal. At first I couldn’t even walk normal that is getting better. It is nice to have the pain relief but I can’t even tell when I am urinating. Sorry to be so graphic. My doctor is asking me to keep a journal on how I’m feeling and I’ll be honest with you even though I don’t have the pain I really don’t like this numb sensation. I know that sounds crazy. I’m a little scared that this is how it ends up. I had surgery 3 of them and if this is what it is going to be what it is like I won’t even be able to tell what is painful or not in physical therapy. Please help. Any words of advice. Thank you Debbie.

    • soula

      Hello Debbie,
      I understand your frustration and nervousness but there is no short cut with chronic pain. Especially after treatment, that is the time we must go slow and wait. It isn’t easy to write this but the long way is the shortest route for someone with chronic pain and what I experienced was you learn more what NOT to do and what DOESN’T work before anything. A process of elimination. And we are all unique and so too are our pain experiences. Listen to your body, don’t panic and go slow. I agree with your doctor – definitely write things down.
      I wish I could help you and all other chronic pain patients more. All my warmest wishes to you.
      Soula

      • Debbie

        Thank you so much for your reply. I’m just very nervous. 14 years of pain and 3 very unnecessary surgeries, you can imagine my frustration. It is very nice not to feel that excruciating burning sensation, but the numbness is kind of scary. I’m writing everything down and I see my doctor tomorrow. Hopefully, he will be able to answer many of my questions. Thank you again. 😊 staying positive through all this. Debbie.

        • soula

          Write that down Debbie and keep writing! It expresses your feelings and gets it all out. When I couldn’t do anything I tried to write a few words every now and then. It was a huge treatment for me. I’m not sure if you’re interested but you can document your journey on pain-train.com.au. I made the resource (with a load of help) and you can show your Doctor or anyone you wish from your phone or send them a private link. Good luck and thank you for your wishes also. x

          • Debbie

            Thank you😀 I will. I use to say I was going to write a book. But not on things to do to help with the pain. Lord knows we have probably all tried everything. Boric acid, tea tree oil, low oxalate diets, all the different drugs, vitamins and everything else you can think of. Does it ever really work. Come on ladies who can say they ever get there pain to a 0/10 everyday from anything with out it returning. So , been there done that. Very frustrated. Hate the surgeon cause I was dealing with my pain before this. Made promises to me that my pain would be no worse than before the surgery if it didn’t work. That’s the only reason I went through with it. He lied. I was at least able to keep my pain from a 2-5/10 on the pain scale with 4 really bad exacerbations a year. Sure my quality of life sucked and sex sucked and I couldn’t sit for a long time and walk long distances. But I functioned the best I could. I had a career that was now taken from me. I had somewhat of a life. And you know what , the granny panties started to grow on me. Lol. I am angry and trying so hard to take that anger and use it positively to get where I was before the surgeries I had. God bless us all who suffer everyday with those sleepless nights cause we can’t get comfortable. And for those who still believe this is a condition that is in our heads. Go to hell. YES RECENTLY HAD A DOCTOR SAY THAT TO ME. A WOMAN NO LESS. 😡

          • Debbie

            I have to say I’m sorry to everyone on this site. It’s very frustrating for me and for the past two years I’ve been going trough hell and back. Believe me I’m actually very happy now that I have a true diagnosis and a true cause of why it happen. I’m only sorry that no doctor in 14 years of having this pain ever checked me for pudendal neuralgia knowing fully that I fell 14 years ago from a very high height right onto my buttocks. It was that week my pain came on. So I’m truly sorry everyone. 😔 Debbie feeling kinda hopeless

          • Debbie

            I have to say I’m sorry to everyone on this site. It’s very frustrating for me and for the past two years I’ve been going trough hell and back. Believe me I’m actually very happy now that I have a true diagnosis and a true cause of why it happen. I’m only sorry that no doctor in 14 years of having this pain ever checked me for pudendal neuralgia knowing fully that I fell 14 years ago from a very high height right onto my buttocks. It was that week my pain came on. So I’m truly sorry everyone. 😔 Debbie feeling kinda hopeless

  • lauren

    Hi
    I really need to find out where to get a nerve block in NYC. I’ve been in pain for years. I need to give it a try. I just got an MRI which didn’t show entrapment, per se, but they found varicose veins around the alcock canal area and also some scarring in the levator ani muscle. Not sure from what. Sounds like I might have some compression with those two options. I don’t wanna die and leave this world never having had relief. It’s too much

    • soula

      Lauren Dr Courtney is in Melbourne Australia. If you’re in NYC head here: http://www.beyondbasicsphysicaltherapy.com/

      • lauren

        Thanks! I have seen PT’s before who specialize in this area (some of the best out there) but my pain doesn’t budge very much which is why I want to try the nerve block. Are you saying Beyond Basics is where I can go for PT or for info on nerve blocks? I currently see a really good pelvic floor specialist named Pam Morrison so I’m going to see what we can accomplish. I’ve seen her only 6 or so times so it’s early in the game. I really want to try a nerve block though. Thanks

  • Lauren

    Can someone please tell me where and which doctor to trust enough for a nerve block. Dr. Courtney? I’ve been in pain for more years than I care to say and would really like to try a nerve block

  • Paul

    Ever consider Marijuana? My Mother looks like she’s got it and she’s not doing well. I am considering trying some Pot to at least get her off sleeping pills. I read an article recently in relation to the use of marijuana for chronic pelvic pain and it seems to be able to help a lot of people.I really feel for the people who are dealing with this shocking stuff. I hope you all find some relief from your symptoms,

    • Soula Mantalvanos

      No Paul, not my style. I’ve never smoked a cigarette to be honest. But the thought of ‘dumming down’ really isn’t a solution for me. I’m not in the thick of it much anymore. I’ve learned to control my activity so a sleep or a glass of champagne does the trick if I need the ‘edge’ off. I do understand it’s a great relief for some.

  • Melissa Williams-Brown

    Hi Soula,

    I’ve been going through your blog today on and off, and just saw that you have had blocks. I had my first two back in Feb and had great success. I was pain free, and a new person, for six months. I had my second one in late July, but then my mother died and I flew back to GA (about 50hours in a plane/car/airport) within 4 days) for the funeral. That set of blocks did NOT work. Last week I went in on Thursday, the 10th, for the first of this set and, knock on wood, I am 80% pain free at the moment! Tomorrow I have my L4/5 block done and am hoping that takes care of the rest. I was so disappointed that the ones in July didn’t work, but I was under so much stress and the physical stress of carrying and lifting my VERY HEAVY carry on bag was probably why it didn’t work. Plus, the day before I flew out I had an all day photo job which wasn’t easy. I am a big advocate of blocks, but you are so right….every person is different. And, as I’ve discovered, each BLOCK can have a different reaction….it may work or not. So, it seems I’m 2 out of 3 for positive things happening with my blocks!! I have enjoyed reading your blog…and I have great sympathy for what you have gone and are going through.

    • Soula Mantalvanos

      I’m so glad you posted that here Melissa. That’s such great information for anyone else considering a block. It’s so true, you can easily over do it after a block thinking you’ve had great treatment. Of course stress is even more wearing. I haven’t had another block since the third, acupuncture fortnightly covering that for now and I don’t get that much relief but I am certainly progressing slowly with the lower pain levels. I imagine this issue as a wound and the less you aggrevate it the better your chances of getting better. The more you aggrevate it the worse it makes it and you end up backwards.

      Good luck tomorrow. I hope all your pain goes FOREVER. Thanks for your lovely words.

      • 323marine

        I was pain free for about 12 weeks after my first round of shots for PN. Recently I had my second round of shots and I’m in bad shape! My doc wants to do a third round of shots, but I’m a bit apprehensive.

    • pilar addotta

      hi , i have been suffering foe 7 years , visit 18 drs, most proctologists, also gi, etc. untill a neurologist in ucla.
      i had an mri and dr. says i have a pudendal neuralgia….
      i had a first shot yesterday and i think it feels the anus harder and weter and still hurts terrible!!
      dr. now tells me to get a second shot…. i am scare!! what should i do!!!

      • soula

        Hi. I’m so sad to read your comment but it’s impossible to provide advice as our experiences are all different. Are you on Facebook? This group is really great if you want to talk to others: https://www.facebook.com/groups/PudendalNeuralgia/. There are some others also. You will find many people to support you there and offer their stories to help you make your decision. I personally go into a 5-8 week flare up after nerve blocks before I have good relief. I wish you well and pain relief!

  • TobeyGal

    Thank you for this post. It encouraged me to get a block.

    • Soula Mantalvanos

      Six months down the track with nerve block number 3 now. Had five weeks of flare after the procedure and I’m not smooth sailing but certainly much better pain levels and a little more capacity. Slow but sure impact! Good luck Tobey.

      • TobeyGal

        What medication do they use that your blocks last so long? My doc just used a 3 hour anesthetic for this first one – as a diagnostic tool.

        • Soula Mantalvanos

          Nerve blocks can last anywhere between no time and forever. Different for everyone but I think what is key is making sure you find your trigger to pain. The closer to the source of pain the higher your chances. I have a great response to anasthetic which completely tells my practitioners my pain is neuropathic. Sleep does the same for me too. I guess it calms the nervous system… like a reboot!

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Definitions of pain

What is Pudendal Neuralgia (PN)?
Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggravated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

What is Neuropathic pain?
Neuropathic pain is the result of an injury or malfunction in the peripheral or central nervous system. The pain is often triggered by an injury, but this injury may or may not involve actual damage to the nervous system. More…

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