Hello everyone, I suffer from chronic coccyx pain which I have had manipulation therapy for over the course of a year, I also suffer from puedendal neuralgia which I have physical pelvic floor therapy for, which is quite slow goibgvivmusr admit. I am suffering at present from awful nerve flare . I cannot sit, which I do very rarely anyway, now I cannot lie. Either on my back or sides. The burning is intense and lasts for hours after. I am seriously thinking of going down the nerve injection route to try and gain some relief. I'm not sure wether its sacral or puedendal and my g p doesn't really care. Can anyone give me any advice as to where to start and who to see . I would really appreciate any help. Starting to become really despondent. Wish you all a lovely new year. X
Sandra
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I just had nerve injections in San Francisco. That is not the route I would go. I found it made things worse in your case I would do something with someone that has a lot of experience . Have you tried following the pudendal neuralgia hope group on Facebook there are a lot of recommendations. You are in a difficult space. I would be willing to talk with you and see if I can help if you're interested. If I can I would be only to try it's a terrible place to be
Thank you both so much for your kind replies and support. I have been having pelvic floor internal therapy, coccyx mobilisation, hip and back Physio. Iv done Pilates and walking. I refrain from sitting at all costs. I stArted with a mini breakdown last year due to pain and it left me with anxiety, so all in all it's a mixed bag to cope with. My husband is very loving and understanding but he is still young and should be living his life to the full. We love to travel but I cannot sit and am struggling to come to terms with it all and accept it. I thought the injections might offer some respite.
I am in the USA. I do not know how your medical system works. Here we would start with GP who won't have any idea what is wrong but will refer you to someone. There are many people here from the UK they know of doctors there and in France that treat PN.
HI there, thanks for your kind reply. I spoke to g p yesterday and he has referred me to dr demello in Manchester who I believe from this site that is educated in pelvic pain and puedendal nerve. A long wait time to see him but hey ho ! What's another few months in the midst of all this. I'm determined to give the nerve blocks a try if he suggests that is the next step. If they don't work then It's back to square one .
I suffer from what I believe is PN also. I have scheduled an appointment with Dr. Prologo in John's Creek, GA in February. I am having the nerve block. If it works I will schedule another appointment to have the cryoablation. He comes highly recommended. I believe he is the first Doctor to use cryo for PN. I will try and keep you posted. I'm sorry you are in pain. I know what it's like.
If you can find out I would be interested in cryo to the ganglion impar. I have been having very successful ganglion impar injections for several years but they only last 3-4 months I think the cryo lasts longer but I dont know who is doing them. Thanks and good luck to you!
I have been researching over and over and I saw a lot of good testimonials for dr prologo in your country. It says that people come from all over the world to have treatment. Do you know how much they cost for the blocks and then if successful the cryo? I know it's a world away at present but if it has a good success rate it might be worth seeing it as a wild card option.
The total for the nerve block and the cryo are $16,600. If you pay cash, I believe you get a 35 percent discount and it brings the total to $9,100 or so. If you pay cash they do a nerve block the first day to make sure PN is what you have and then they schedule the cryo for the next day. I am paying thru my insurance so I will have to make two trips but it's only about 4 or so hours. I have never been formally diagnosed, so I hope I have something else but I don't think so. I can let you know how it goes for me. I am scheduled for February 14th for the block and then will go back for cryo if he and I decide that is what I need to do. Im just afraid that freezing the nerve will cause me to be incontinent. Say a prayer. The prices I gave you were on a sheet that was sent to me, so I don't know if charges vary or not. Say another prayer.
Thank you so much for that , it was helpful . At least I know wether I can afford it or not. I will say a prayer for you and I will be thinking of you !
I had the nerve block and it lasted about 4 hours or so. Was going for cryo but insurance denied my coverage. They say it's experimental and no evidence it works. My Doctor is writing them again.
Will do. I have to get the nerve block first because I have never been diagnosed with PN. I guess that will determine if I have the cryo or not. Have you been told of any side effects with the cryo?
Hi Ive been suffering since 6 years and just got diagnosed through an neuro MRI for PN. I have been going through the internet to get a contact for Dr Prologo as Ive heard about he's technique. I don't live in the US so would need more information. Can you help me with a way to contact him. Thank you
Thank you. I hope it works also. I have had this for 8 years and it's slowly getting worse. I commute 130 miles a day and sit at a desk for 8 hours. I use cushions, ice packs, Ativan and I hook myself up to a tens unit when I drive. I find it makes it much easier that way.
Where do you attach the tens unit to. If it helps I may try one. I'm on lyrica for nerve pain and mirtazipine for sleep and depression. It's all consuming at present.
It's a healthmateforever. I don't see a model number. The pads are adhesive and stick to your skin. You can use them several times before they wear out. It only helps while it is attached. It has several different settings. I like the cupping setting.
I get good relief from Gabapentin 600 mg 3x a day and tramadol 50mg 3 x plus the ganglion impar injections 3-4 times a year really help. My pain started at 10, 3 years ago and today I walk around and live a normal life with pain in the 1-3 range. I use a "Tush Cush" for long term sitting.
Hi , I couldn't tolerate the gabapentin so they gave me lyrica, I think I'm only on a low does 150mg twice a day. My pain still is about 8 on a daily basis. Do u think the tush Cush would be suitable for me to try , bear in mind I have coxcydenia so cannot put pressure on tailbone. Thanx
Tush Cush is perfect it has the cut out and I modified mine a little to make the cut out a little large. I have coxcydenia and PN. They have 2 sizes. It goes by weight. I got the 200 and over one and have since gone down to 170 and it still works for me.
When I first started the Gabapentin I was like in a fog kind of loopy and had trouble driving a little but I adjusted to it in a few weeks and even went up to the highest dose for a while when the pain first started.
There are a few small studies that say they do work and they do work for me whereas the pudendal blocks did not. I am in the USA and I have had my pain Dr give me the scripts and I have also had my GP (family medicine) prescribe them as well. Gabapentin is a well known drug used for nerve pain and tramadol while it is a drug which causes dependence does not have many of the side effects of vicadin or other opiods..
I tried to get an appointment with a pain doctor but haven't had any luck. I wanted to try the ganglion block because someone recommended it. I also wanted to try gabapentin. Instead I have made an appointment with Dr. Prologo in Atlanta for a PN block. He is not in my network so cost is an issue. Personal question, does any of those medications and the ganglion have an affect on your sex drive. I'm wondering now if I should try and see a pain management doctor here in Nashville.
I don;t think so. Every one is different but I don't think that is listed as a side effect but if you are in terrible pain what good is a sex drive. Ejaculating caused me terrible pain before and not now.
I am so confused as to what I should do now that I have had the wonderful opportunity to speak with you. If I could find a pain management doctor where I live I could get one in network and it would cost less and I wouldn't have to travel so far. Any advice how to get in to see one. The last time I called someone and told I thought it was PN they said we don't treat that and that was it. See Dr Prologo is going to freeze mine if the PN injection works but I have read it should never be removed burned or frozen because it controls a spincter muscle and the feeling in your penis and if it is frozen you could be incontinent. Idk.
Yeah my pain Dr said don't freeze burn kill or remove anything. Did you go to pudendal hope or any other sites. There are lists of Drs that treat PN. Your GP should be able to give you meds. I found a PN Dr in New Hampshire and he did an electro shock test and said I had it and sent me to a pain dr in NH that specializes in those shots. I suffered for weeks waiting for an appointment. Gasbapentin shut the pain right down and tramadol helped too. Convince your GP that you have bad burning nerve pain and he should at least give you gabapentin or something that works for you.
I did go there and I even emailed them. There is no one in Tennessee that specializes in PN. I don't know what to do now. I think I have emailed my GP that he is sick of hearing from me. The thing is I don't have burning pain yet. It is on the left side of my anus and it feels like muscles constantly in a knot and moving.
Look up Levitor Ani syndrome sounds like you might have that. Spasms and not burning nerve pain are sometimes caused by Levator ani. Try a Proctoligist or seek info on what type of Dr diagnosis it. I have heard of botox injections down there working wonders. There is a Dr in fl that does them I think . You might have to travel but if the pain gets intolerable you have to do whatever to stop it.
I have looked that up before but I didn't think my symptoms matched those, of course, I'm no doctor. I just need to do some fast research as my appointment in Atlanta is February 14th. I sure am glad to have someone to talk to about this stuff. It's very isolating.
I suffer from exactly the same symptoms as you. If I were to describe it, my pain is identical to yours.
I have had PN blocks, neuro prolo therapy, internal coccyx manipulation, you make it. None if these have worked for me. The only temporary relief that I have received is from Radio Frequency on the nerves (burning of the nerves). I suggest you look into that.
I'll be happy to speak with you over the phone if you'd like.
Hi raj And Adele. Thank you so much for your kind replies. I live in U.K. In the north west and we are very behind on health care as quite rural so I have no idea where to begin! My g p is no help as he just says we have to live with some kind of pain! I am trying but then it affects me so much I struggle. Do I intimidate by going back to my doctor ?
You should start by reaching out to a good pain management doctor. Pain management doctors like the name suggests try and help reduce your pain till it's either treated by someone else or even if it's permanent. Ive head some relief with the Radio Frequency of the nerves in the lower spinal cord. Do you have pain management doctors in your area? If not, can you travel locally within England?
No... You cannot do RF on the pudendal nerve. It is a motory nerve that is required for our bowel to function and has other functions as well. RF basically burns the nerves and you absolutely don't want the pudendal nerve to be burned. How this helps.
I did have radio frequency to the PN. The first one I had done on my right side only 3 areas of the nerve and it did seem to help. The left side did not. In fact my specialist felt it made me a little worse after he performed a q-tip test. I was much worse to touch and burning. I did not become more incontinent then I already am. Urinary stress incontience that is. No bowl incontience just our normal everyday constipated life. So, I do need to clarify that some doctors are doing the frequency directly to the nerve. It's just a very large area of a nerve. Hit or miss. They decided not to persue this area on me again. I'm now scheduled like many are with Dr. Prolongo. March 21st. I to will keep you guys informed. Will the ones going earlier please do the same. Thank you. Deb🙏🤞🌹👍 Praying it works so we can come on here and say everyone go. Find the way to go. Change your insurance if need be.
Thank you. It's been rough for all of us. I will keep you all informed. If it works and if it doesn't. Financially I'm praying my insurance covers this cause I'm broke like most of us are. Thanks for the prayers. I pray for all of us that one day they do the research that is required to help us all. Keep the hope going. Deb🙏👍🤞
I have had Rectal pain 16 years, since a colonoscopy. When things become unbearable, I use Valium, 10 mg. Suppositories, which I have made at a compounding pharmacy (cost about $80 in US). There's a famous Dr in Nantes, France who works with pudendal patients. Many patients in US have different epidural guided (under fluoroscope) injections. Also there's a treatment called cryloblation (freezes nerve), but it's only used for those who also have vaginal pain. There's 4 famous doctors in USA who deal with pudendal pain. You can look them up under Pudendal Nueralgia Assoc. (Dr. Filler Not recommended ) There's a group called Pudendal Nueralgia Hope. People belong from all over the world & it's full of good ideas. Some have had help with newer spinal cord stimulator & many other ideas. . You need a good pain doctor, usually an anesthesiologist originally. I'm not sure how your medical system works in England. Is that where you live? I totally understand your dilemma. I use ice packs & moist heating pad, Celebrex 200 mg. Valium 5mg (after BM). & Fentynal patch (helped for years). My regular Dr didn't know how to help me, since it's a rare condition. But it's not in your head! Botox shots can help, from right Dr. Some have tried several different physical therapists (not all are good). See you on line, Pudendal Nueralgia Hope (closed group to sufferers). Adele
I have heard of a doctor Prologo in GA who does cryloblation of the Pudendal Nerve. I'm a male, age 38. Is the cryloblation a treatement only for women or are their doctor who can do the same for men too?
All, like Adele 1 mentioned, I don't recommend Dr. Filler as well.
Google the Dellon Institute, Dr. A. Lee Dellon, if you have pudenal nuralgia he may be able to help. i had chronic pelvic pain for 3 1/2 years from damaged pudenal nerve from a episiotomy 31 years ago....don't know why it flared up 3 years ago but it did. After seeing a ton of doctors and trying many drugs and shots and phyical therapy i finally found a doctor that did surgery to remove the damaged nerves. I am at week 9 post op and am pain free!!! Best of Luck
You can email me if you like & we can talk on the phone.
I have interstital cystitis which then progressed to include puedendal neuralgia. The neuralgia symptoms were excruciating and much as you describe yours. I did pelvic physio-- which helped a little-- and diazapam - which also helped somewhat. I finally did go the pudental nerve block route. So far I have had 3, each a month apart, and see the Dr. for followup next week. I still have bladder issues from the IC, but the PN is very very much improved. Can now walk normally, sit, and since the blocks have not had a major flare up. Would definitely recommend giving nerve blocks a try. I went through the Wasser Pain Clinic at Mt Sinai hospital in Toronto. I would also recommend having your GP or specialist refer you to a pain clinic if there is one in your area.
Thank you all so very much for your supportive replies. It is all a lot to think about. I have an appointment scheduled on 25th January with a lady doctor at my surgery so I intend to ask her to be referred to a pain specialist. I was under the spine care team last year for coccyx pain and I had one injection but then I decided to go to sayer clinics to dr durtnall who specialises in coccyx treatment, if only that was my only problem. The spine care team do ganglion impart blocks but not puedendal nerve
Hi everyone, just an update and to ask advice again! I saw my doctor today and discussed being referred to pain management but to someone who has knowledge of p n . He rang me later and said he has written to dr. Demello in Manchester. Has anyone any input please? Thank you so much
Hi. I believe Dr De Mello has a good reputation, and it certainly will be a big improvement on your GP! Good to finally speak to someone with expertise. Are you within the Manchester health trust area? I actually tried to get a referral to Dr De Mello but my GP said no as we are outside Greater Manchester! Anyway. Best wishes.
No I am not near Manchester, I live in Cumbria which is well outside the area so I was surprised that he so willingly agreed to refer me, we haven't anyone near us that is experienced in this nerve so I told him that I had researched into it and found dr greenslade and baraniwski but he said they were to far away to agree to fund so he settled on Manchester. I was happy with that .
Ok, thanks. I will try my GP again, as there is no 'pelvic pain' expertise available in our area so (as your example shows) I ought to be able to get a referral. Dr de Mello is only 30 miles from me. Frustrating. Anyway, good luck with your appointment!
I would surely go back and ask for a referral. I wAs at the physical therapist in London yesterday for my treatment and she said to see dr demello but she didn't think injections would be needed or beneficial as part of my recovery. So I will see him anyway then take it from there .
Just updating some news, I got my appointment with dr demello in Manchester. It came through for end of March. So that hasn't took long at all. My gp only referred me 10 days ago. So we will wait till then .
Google The Dellon Institute, Dr. A. Lee Dellon. I had pudenal nuralgia and had the surgery to remove the damaged nerves and am post op 9 weeks pain Free!!! If this is your problem I highly recommend this Dr. and the surgery. Best of Luck
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