Firstly thank you for the opportunity to join such an active, informed community here. I am finding the conversations I have been following here much more informative and hopeful than certain other websites which I found extremely depressing!!
I am a 35yo male really suffering with symptoms of PN, namely rectal burning pain, that radiates around my tailbone and deep in my pelvis. Sometimes it aches and feels like a deep claw in my rectal area and pelvis. Sitting down aggravates this and I have minimal sitting tolerance.
I became ill with a GI infection 10 weeks ago that caused proctitis and “moderate rectal wall thickening” on CT-scan. This illness also caused me to have an HSV outbreak in the anogenital area at the same time. All of that has resolved, including the rectal wall thickening on subsequent scan, but I have been left with this unrelenting nerve pain in my rectum and pelvis following this episode. Colonoscopy was normal. Something has happened to my nerve.
I wake up fine in the mornings completely pain free, the pain has improved a bit since a month ago and I can last until the early afternoon generally until the pain flares up (unless I have to sit down, driving kills me). But yesterday afternoon I had the most shocking searing and burning pain in my rectum. It felt like glass shards. But then the pain settled back down by the time I went to bed.
I finally saw a colorectal surgeon last week who examined me and believes that the rectal wall thickening I had from being sick, has caused contraction in my pelvic floor muscles which may have contracted and are irritating my pudendal nerve. She has suggested possible Botox injections.
I have gone from being super fit and active, and very social, to not being able to work and because I can’t sit down for any reasonable length of time, I have also been declining a lot of social invitations because I just can’t sit down at a dinner table without severe pain. Most of my sporting activities have had to also stop. It’s been an incredibly lonely journey.
I am just wondering if anyone has seen or experienced PN relating to an HSV infection?
Also, I have had an incredibly hard time finding any decent PN specialist doctor in Australia. I am in Sydney, I tried WHRIA which has a special interest in PN, but they told me they no longer accept male patients any more :-((
Am on amitriptyline nightly.
If anyone please has a suggestion for any Australian doctors or any other general coping advice to impart to me, I would be extremely grateful.
I am trying to stay positive but sometimes it is very hard, when my life has been so upended by this. I am trying to hold onto hope.
Thank you so much, your assistance and time is so much appreciated.
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Nike101
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Hello, I'm a woman and I don't have the syndrome that you have. I'm very sorry you're suffering with this. I do know of many men with this kind of pain, whether it be Levator Ani syndrome or another pelvic syndrome they see urologists. They also see a pelvic physical therapist and people are able to get a lot of relief from this. The pelvic PT is specially trained and only does pelvic therapy on both men and women. On a man they work via the rectum with their finger, thumb or a wand. After a few treatments they can teach you how to work with a wand to relieve spasms but ideally you'll work with the therapist for quite some time. They're able to get the pelvic muscles to relax and give you back some function. If you don't like the first PT you see then try another. In some areas pelvic PT's are difficult to find. If you're in a big city it's easier. I know from experience there's a big difference between one and another! A huge difference. So don't give up if you don't have a good experience with one. It doesn't mean anything. Do NOT do any sort of surgery or invasive 'anything' until you get another opinion or two. People with pelvic pain and suffering have heard it's caused by every reason imaginable but if you keep reading and researching you'll find the answer. I assure you that most men in the U.S. are seeing a urologist for this, but not any urologist. It's important to find one that deals with pelvic pain in men. Most treat both men and women. They understand the pelvic floor and how the pelvic floor muscles impact the organs in the pelvic area. Read about the pelvic floor muscles and pain and try and learn some basics. Keep reading and researching and eventually you WILL find the answer. Good Luck, Kit
Thank you so much for your reply, Kit. I appreciate your message so much.
Yes, I tried a pelvic floor PT a few weeks ago, I was hoping that she would attempt some internal work rectally, but she was concerned it would irritate the area so just gave me some stretches. Sometimes I actually feel that if I knew how to use an internal wand, it would actually give me some relief. I will look for another therapist, thank you for the suggestion.
Thank you for the tip also about seeing a urologist, I will research and see if I can find one here in Sydney that deals with men experiencing pelvic pain.
This has been such a lonely journey. I really appreciate your support and to know that I am not alone in dealing with this syndrome. Thank you 🙏
Oh good, you're in Sydney...A big city. You should be able to find someone to help. You might want to look for a urologist who treats Interstitial Cystitis, a bladder disease that directly involves the pelvic floor muscles. Also, Pudental Neuralgia involves the pelvic floor muscles. If a urologist is treating these 'orphan' conditions and diseases then they're more likely to be able to help you. Also, I have Interstitial Cystitis and it involves the bladder but involves the pelvic floor muscles to a huge degree. Compounding pharmacies make suppositories using Valium and they are extremely helpful with pain!! The valium relaxes the pelvic floor muscles and whatever else is going on and it really helps! Make sure to look for a compounding pharmacy that makes them and when you go to the doctor ask for a prescription.
The fact that your PT didn't feel comfortable working internally suggests to be that she's not as well trained to be your PT! Many pelvic PT's pay to continue their education by studying with more experienced PT's in workshops around the country. If they do this it's a sign they're committed to their work and want to learn more and advance. I'd suggest you order a wand and find a 'how to' that's been written on the internet. Do you know where to get the wand? The best ones (in my opinion and my PT's) are made by Ashley Rose and it's called a trigger point wand. You have 'trigger points' internally that a PT can access. (and so can you). They're in different places in different people but you'll know when you hit one with a narrow slightly pointed wand. It's considerably more painful than the area around it. The idea is to hold the pointed tip on it for 10 to 15 seconds and release. You're not trying to hurt yourself so go gently but in time you'll get an idea on how it should feel. So that's the point of the wand...To release trigger points. Buy the lubricant from Ashley rose or use coconut oil.
I don't know if the book 'Headache in the Pelvis' would help you but you may want to order a used copy on Ebay and see if it does help. You might want to ask Ashley Rose if they can suggest something for you to read on how to use the wand. That's all I know and wish you good luck. I think. finding the right doctor will be a huge start. They know who the good PT's are too. Best, Kitt
Thank you so much Kit. I had actually been planning on buying a wand and gently trying it myself, I watched a good YouTube video a few weeks ago. Thank you, I’m going to give it a go. The colorectal specialist said I have tight pelvic floor muscles which they think might be pressing on the nerve, and recommended Botox under general anaesthetic, but I am worried this could flare up the pain. I am not sure. I will try the wand first definitely. Having been healthy and so fit my whole life, and now suddenly landing in this baptism of fire into the medical system, has been so difficult. I am so grateful for your supportive comments, thank you so much!!!
Morning - your in Sydney so you should find plenty of specialists. With my experience with similar symptoms when have a flare in my pelvis. I found a specialist who I see regularly, he goes in by pushing on your nerves and if they can reproduce the pain that’s the nerves you need to work on….and causing your pain when sitting etc… I have a wand and i have internal massages every couple of weeks. I’m a male 40. It sucks, I was active like yourself , running, swimming and biking , super fit and now I don’t do nothing to avoid any tightness or flares. My advise is, stick to your meds , they can be heavy, they can have side affects but they will go and do help. Get enough sleep as well. Your body recovers when you sleep .
It’s very important especially with pelvic pain.You will notice if you don’t have enough rest, your symptoms will get worse. Caffeine , max two coffees a day.. caffeine is a stimulant and too much will affect your rest..There are plenty of medications for nerve issues , amitryptuline , nortiprtyline , Deluxotine , gabapentin etc …some can be taken together and they will help… I went round the houses for years…stay strong and when your down message on here or ping me privately…PT stretches make my symptoms worse but everybody is different so I just have internal therapy..
I message so many people on here who I have never seen or spoken to face to face, but the thing we have in common is that we suffer in silence everyday while still working and staying strong the family…you’re in the right place for advise….
Thank you so much man. Yes I am finding that the PT stretches seem to be aggravating my rectal pain a bit? I have backed off them today. I need to buy a wand and start gently using it, is it just the 9 and 3 o’clock positions (side to side of anus) to use the wand rectally? I read not to push it in the 6 or 12 o’clock positions? Hope that makes sense.
Thank you so much for your message of support. This has been such a lonely journey the past 3 months. I appreciate your contact immensely!
Can I ask do you also have any good tips for sitting down? Currently I am using two separated rolled up towels.
There is a book called headache in the pelvis and it does show you all the trigger points internally but you have to take it slow…I do like 3-5 minute just slowly a couple of times a week …push on the tight areas and that’s it rectally ..then i go a couple of times a month and she does the same, 10-15 minutes slowly pushing on the tight areas while I slowly breath in and out…so before you start I recommend you find a specialist who will show you how to do it….start calling pelvic therapist and ask if they can do do internal massages…
I’m in the Uk , I was hybrid working into London but the pain on the train was too much as it’s a 2 hour door to door trip so I’m now at home full time….i stand all day with a standing desk…sitting you can buy different cushions on Amazon.. i have a donought one so there’s no pressure on the perineum when trying to sit for a bit and rest my legs…
I lie side ways on the sofa when I’m with the fam..it sucks and your brain now will just focus on that pain. It will be a lonely journey because people will tell you it will be ok, just don’t think about it etc…friends will tell you to get on with it…but they don’t understand that just a simple daily activity like sitting hurts…it’s fuck with your head and your mental health…especially when you were so active and having to accept that you can’t do it for a while…
Stay strong and my advice is start taking meds and they will help….there will be a lot of trial and error but you’re not alone…there are thousands of people on here everyday going through pain in silence praying to be pain free…and there will be a medication that will help to get through this…
Yes you’re completely right, this illness fucks with your head. I was supposed to be going away with friends this weekend but there is just no way I would be able to sit on chairs at dinners, etc. So I made up an excuse and stayed home. I am a very private guy and it is such a hard thing to tell your other 40 year old active mates that one is suffering from such a condition, I find it humiliating. I am seeing a psychologist every week which has helped my head space a lot.
Thanks for your tips about the book and pelvic physiotherapists. You’re right, I need to find one that is willing to try internal massage with me.
Reach out to me anytime you need a chat. Those of us in this situation need to stick together and support one another, thank goodness for this forum.!
Hi,I also suffer from pudendal neuralgia and have done so for 2 plus years. However I am a female so slightly different. Mine came on after surgery.
I too live in Sydney. I didn't know that WHRIA was no longer seeing males although it is a women's health and research institute. Could they not suggest anyone for you to see?
Have you seen a pelvic floor physiotherapist as they can really help men and women. The one I see has seen a male person suffering from.pudendal neuralgia.
Have you had an MRI as they can, not always though, show up the nerves? Have you had a definite diagnosis of PN?
Did the colorectal specialist describe it as PN? However, there are very few specialists who seem to know a lot about PN. I, unfortunately, don't know any specialists who treat men but I could ask my pelvic floor physiotherapist if she knows of anyone if you would like me too.
I sit on a pudendal cushion which I purchased from Pelican Manufacturing in WA. They have 2 pudendal cushions, one is a travel one which is very easy to carry around with you. Look up they website. I wouldn't be without mine but I haven't enquired if they are suitable for a male, I presume they would be.
I did see a pelvic physio a few weeks ago but she was disinclined to do any internal work with me, she said she was concerned that she would irritate the area. I might try and find another one and give it a go.
I have had a general mri which did not show any contrast uptake in the pudendal area, but I am going to ask for a referral to the hospital in Sydney where they can do the specialised dynamic mri of pudendal nerve using the Tesla 3T MRI. The radiologist there is apparently an expert in interpretation of pudendal nerve MRI.
I haven’t been officially diagnosed yet, my colorectal surgeon (who has interest in PN) wants to do a rectal biopsy this week, but her initial take on this was that I have tight pelvic floor muscles which may be irritating the pudendal nerve. She mentioned trying Botox under general anaesthesia, but I am not sure about this yet.
May I ask, have you had to have any nerve blocks? Or have you been able to conservatively manage your symptoms so far?
Thanks so much for tip re: pelican manufacturing, I bought the same cushion a few weeks ago! It helped initially l but I found in the car, that the centre area of the cushion was still causing aching pain under my perineum, it’s almost as if that area of my body just can’t handle any pressure at all
May I please ask are you taking any medications for this horrid condition? And have you seen any improvement at all in the past two years?
Would you please be able to let me know a good pelvic physio ?
Hi Nike,Re the cushion. You could also try rolling up 2 small towels and placing them whatever distance apart feels comfortable for you when sitting in a chair or carseat. You can also cut out more of the foam on either side of the area cut out in the pudendal cushion or you can buy a horseshoe like cushion from KMart (very cheap) and then take the foam out of the cover and cut more out so it is the right comfort for you.
Which hospital in Sydney does the dynamic mri - is it the San Hospital with the report done by Dr Toos Sach or MMI at Macquarie? I had a MRI done about a week ago and waiting on results but it was a spine and pudendal nerve mri ordered by my gynaecologist but my colorectal specialist wants the dynamic mri done as well but that is more for my rectal issues.
As well as pudendal neuralgia I also have a rectocele and intussusception which is not helping as I get searing pain after bowel motions which lasts for hours.
Yes I have had 4 nerve blocks, plus botox into puborectalis and coccygeus muscles, a ganglion impar block, pulsed radio frequency to pudendal nerves and botox into the anal sphincter (because the muscles were going into spasm which was causing the anal pain). The botox into the anal sphincter was done at the same time as a sigmoidoscopy.
All of these procedures helped a little but I can't say which has been the best. Perhaps it is a cumulative effect after 2 years of procedures.
I am currently taking Pregabalin (Lyrica 75mg twice a day) plus PEA supplement (Palmitoylethanolamide) 400mg 3 times a day. You can go up to 1800mm per day of PEA I believe. I get mine made up by a Compounding Pharmacy. They are not cheap. When I attended the Pain Clinic at Concord Hospital they recommended Alpha Lipoic Acid which I notice someone on this forum also takes. I haven't had it yet as I find the PEA supplement to be quite helpful.
I am also considering trying medicinal CBD oil. Some people use it and find it helpful, but not sure about it helping with pain. I think you may have to add THC to it and then of course it is illegal to drive in NSW with it. You can drive if just taking CBD oil.
I could ask my physio if she is taking new clients if you would like me too? She is very good and seems to know alot about PN. I know, however, it can take awhile to get into her as good pelvic floor physios are hard to find.
I have seen some improvement over time but tbh the last 2 plus years have been hell. I have done nothing except go to medical appts and like you decline invitations because it is too hard to sit comfortably for any long periods.
My whole life turned upside down when this happensed so it has been a long hard journey and I basically just go from one day to the next.
Have you also looked up proctalgia fugax - did the drs mention that although I am not sure in your case whether it could also be that.
Anyway take care and let me know if you would like me to ask my pelvic floor physio whether she is seeing new clients. I am seeing her again on 6th Feb.
Yes I was reading about the MRI that can be done under Dr Toos Sach at the SAN? Is that where you went? I have heard good things.
Thanks heaps for tip about cutting out foam in the pelican cushion, I will give this a go.
For the nerve blocks or Botox, can I please ask did it cause you any flare up of pain after the procedures? Did you go to the doctor ant prince of wales private hospital for these? Also does one undergo general anaesthetic for these procedures or can it be done whilst awake?
I have actually started on the PEA supplement. You are right not cheap, but I think it has helped a bit. I will also look into the alpha lipoic acid, thank you!
thanks so much re: asking the physio, otherwise I am sure I could possibly find another in Sydney.
Great we can all share our tips and experiences together here and support one another. Thank you.
Hi Nike,Yes I went to the San, report is being done by Dr Toos Sach but the MRI was requested by Dr Jason Chow who is my gynaecologist. I believe Dr Sach does very thorough reports.
Yes I I did experience flares of my pain after the procedure but is is only for a few days. It takes awhile for the botox and nerve blocks to work properly. For the botox you have to give it 2-4 weeks before you can notice any benefit. Yes, they were done under general anaesthetic and I had mine done at Prince of Wales Private Hospital, except for botox into anal sphincter as that was done at Macquarie University Hospital.
Before cutting into the expensive pudendal cushion you have, I would try the 2 rolled towels first or buy the cheap one I mentioned from KMart and experiment with those. Have you seen the travel pudendal cushion from Pelican. I find that is better than the standard one as it appears softer and more forgiving.
I will get back to you re my pelvic floor physio.
All the best with it all and let us know how you go.
Hi Nike,Yes I think they did. The first one I had done by Prof Vancaillie. I only started seeing Dr Chow in September last year. He is wonderful and so caring and understanding.
As I had a couple of different things done at the same time it is hard to know which one has been the most effective. As I said, I think it is a cumulative effect of all of them. I do think the pulsed radio frequency to the pudendal nerves has definitely helped but everyone's reaction is different so whether it would help with you or not I don't know.
They say if the nerve block helps, even if only for a few hours, it gives them an idea as to whether or not it is PN.
Thank you so much. People like yourself are a real light on my path in this awful situation.
That’s wonderful to hear about Dr Chow, my GP suggested him to me. I believe he is very difficult to see but I will give it a go.
It’s a relief to hear that he was nice and understanding. Did he also perform the pulsed radiofrequency ablation? He is a pelvic pain specialist I think?
Unfortunately it is a long wait to get into see Dr Chow I believe. Last year it could take up to 6 months to get an appointment. I suggest if you want to see him to get a referral to him asap. When I submitted my referral I put a covering letter with it explaining my situation. I was lucky that I happened to get a cancellation when I rang up one day to see how the appointment wait time was going as I hadn't heard anything.
Yes it was Dr Chow who performed the pulsed radio frequency ablation, along with the nerve blocks snd S4 injection. I understand he is a gynaecologist /obstetrician, pain management specialist.
Glad I was able to help a little. Keep in touch and I hope things improve for you. PN is a horrible condition and so misunderstood by many medical professionals, you have to keep advocating for yourself. I hope you can get into see Dr Chow if you go down that path.
Thanks so much. I’ll make contact with the rooms this week. I’ll let you know what happens.
You have been incredibly helpful, thank you from the bottom of my heart.
You are right, PN is a horrible and misunderstood condition.
My pain seems to have settled a bit from two months ago, but then again, I have not been back at work and sitting down. I am not quite sure how to manage work because it would be so hard to stand up all day long. I guess I will take my two towels and cushion with me when I return to work, and see how I go. I hope that I can get through work days without too much pain. - Hope is everything with this condition.!
I never ever would have thought that sitting down would ever be a problem for me in my life. - Never trust life when it is going according to plan eh!!!
How true that is. I have said to many people since having this condition, we take sitting down so much for granted and we don't think about it but when you have PN that all changes.My life turned upside down 2 plus years ago and has never been the same since. 🤞over time, I will see more and more improvements and hopefully more advancement in med8cal breakthroughs.
All the best for going back to work
I hope it all goes well for you. I'm glad I was able to help shed some more light on this condition for you. Keep up the good fight. We all have to just keep hoping. Without hope there is nothing.
I have also suffered from Pudendal Neuralgia for many years. I had seen many urologists for this and none had any idea what was wrong with me. Most performed cystoscopy procedures / prescribed Cipro and then told me it was in my “head”.
I finally found a doctor that knew what the problem was the instant I met him. He suggested I see a Physical Therapist that specialized in treating this type of medical issue. Note: this doc has since retired.
I was lucky to find a PT that was located close to me that literally saved my life. I am pretty much pain free for 95% of the time and she taught me how to self-treat when I have flare ups. I go once a month for a tune up to be sure I am OK.
Daily Meds: I take 600 MG of Alpha Lipoic Acid twice a day & 150 MG of Pregabalin in the morning & evenings.
Here are two websites that will help with information:
pudendalhope.info/ - this one also has listings of PT's around the world.
My son has this in his penis, he has shut himself off from everyone because the pain is that bad, can't even hold his penis to wee. He's had this for 3 years and spent thousands trying to get help, botox helped by taking the pain from 10 and over to about a 6, so give it a go but it's not permanent. Can't believe we can do transplants, take a man to the moon etc but can't help the little person.
Thanks so much for your note, really appreciate it. I am praying for your son, and for every one of us experiencing this dreadful illness. Sending you healing energy.
I have levator ani syndrome which causes pelvic floor to be tight alongside painful spasms in rectum. What works for me is firstly buy a memory foam cushion (amazon) I take mine everywhere I go, really helps when sitting.Secondly I get botox injections into pelvic floor while it doesn't eradicate pain it really lessens the severity of painful spasms
I also have a specialist physio who does trigger point therapy and combination of treatments really do help.
I feel your pain because I went through similar experience and the most important I found a method that helped me. I’m another one who is recommending the book “A headache in the pelvis” by Dr Wise.
Here is my story:
I’m having a pelvic pain for 3 years now. Most of my symptoms related to a sitting pain, rectal pain and some issues with bladder. I visited so many doctors, most of them had no idea what is going on with me, have done multiple tests that didn’t show anything abnormal. I was in so much pain, literally lost hope that my life will be normal again. Finally I was diagnosed with the pelvic floor dysfunction due to muscle spasm and after that I started looking for anything that could help me with this condition.
Someone in this forum mentioned this book. I ordered on Amazon and read it. This book is a “bible” for patients who suffers from pelvic floor muscle dysfunction. You should read this book because you will find an exact story experienced by Dr Wise who found a method that helped him and other thousands of patients to become symptoms free.
I contacted doctor Wise and went to his clinic where was taught his method called Wise-Anderson protocol and for the last 3 years I’m following this protocol at home every single day. I believe in his method now, because it gave me a hope that I can return to my normal life without drugs, surgeries, injections, the hope that I almost lost. I started feeling better in about 2-3 months of following the protocol. And now my life is almost normal again. I wasn’t able to sit for more than 15 minutes, now I can travel with the special cushion in the car or plane. My symptoms are improving. The sitting pain is still there but much much less intense.
You can check the website pelvicpainhelp.com where you’ll find a tons of information. There is a combination of external and internal trigger points releases, some stretches and the most important the relaxation that you have to do daily.
It’s a stress related condition and find a way how to deal with the stress is a daily task. Everything that helps you to get relaxed, will help with these symptoms.
Thank you so much for sharing this with me. It is so much appreciated. I have ordered a copy of the book and will absolutely follow it. Thank you again!!!
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