Hello all, First of all, I am so glad to have found this group where people understand the debility that an illness like Pudendal Neuralgia [PN] causes. I had a very bad UTI that went on for 3 months, took 8 rounds of antibiotics before it was out of my system. In its wake, I have been left with PN. After seeing several doctors, I luckily landed a neurologist who first put me on Gabapentin/Amitryptiline and now Pregabalin/Nortryptilin. I am also seeing a pelvic floor physio who has given me some exercises to help with the pain. Recently I saw a psychiatrist since a pain management specialist had a different diagnosis of pelvic floor pain and not PN and wanted to rule out anxiety and depression. That was ruled out by the psych but since my pain was not controlled by Pregabalin/Nortryptiline combination, he put me on 40 mg of Duloxetine. I am worried about urinary retention since I have a history of terrible UTI [which I believe caused PN in the first place]. I had one episode of low flow and what seemed like retention which also coincided with running out of meds. I put myself on an emergency Pregabalin 50 mg and it seems to have resolved. I do have endometriosis but that hasn't given me the kind of pain in my genitalia, anus, and perineum that's typical of PN. I have seen a urogynaec, gynaec, neurologist & pain medical specialist. I am fortunate that in this Asian country I am able to get these specialists. The costs are all out of pocket but at least I can get help. In the long run, I hope to be able to get off medicines and shift to physio, yoga, meditation to manage the pain. I am wondering if any of you with a sudden onset of PN due to an infection have had an instance of the PN disappearing as quickly as it came? I had MRI, no nerve entrapment and I am otherwise healthy.
Diagnosis of Pudendal Neuralgia - 43,... - Pelvic Pain Suppo...
Diagnosis of Pudendal Neuralgia - 43, Female, Asia
Hi. I’m so sorry to hear what you’re going through. I haven’t had PN but deal with vulvodynia with pain in and around vagina area. Physio pelvic floor therapy is what helps me the most. I’m not sure how they do it there but my physio actually deals with the pelvic nerves inside by pressing on and working on the tissues inside the pelvic area. It hurt so much to start off with but within a couple months I felt so much better. Also had to get on Estradiol cream which helped as well. I hope you find some relief soon!
Thank you for that suggestion! I will ask my physio if this is possible to do. She is trained in the US and is the one who's most knowledgeable about PN of all the specialists I am seeing.
Hey, I have been suffering from PN since the beginning of this year and it has completely put my life on pause. MRI will not show PN unfortunately. The best way to diagnose if your pudendal nerve is the issue is by getting a pudendal nerve block which will numb the nerve for around 8 hours. If your pain goes away while the nerve is numb then you know that it's definitely the pudendal nerve causing your pain. This condition is essentially the same as carpal tunnel syndrome but of your pelvis instead of your wrist. I tried a very high dose of gabapentin and a lot of pelvic floor therapy with no relief. I ended up having decompression surgery last month which is the only long term solution if your nerve is compressed severely. There are only 6 doctors in the US that perform this surgery so I would start by trying to schedule a nerve block with your pain management doctor and researching doctors in your area who perform decompression surgery. Let me know if you have any questions or need any help at all.
Thank you for sharing your experience and I hope surgery helps you. I have gone from being a full-time professional to working 2 days per week - I also have a kindergartener so there's quite a bit of responsibility. They haven't suggested surgery because it is not compression but neuralgia but even that is up for debate apparently! The physio has been helping and I hope to be able to continue it though it is expensive and out of pocket completely where I live.
There is unfortunately no real way to tell how bad your nerve is compressed. The best "test" is your response to a nerve block. My pain went away for about 8 hours after the block so my doctor recommended an ablation which didn't help at all. My doctor didn't even know that decompression surgery was an option. Like I said, there are only 6 doctors in the US who perform it so it took a lot of research and travel for me to find one. My pain was unbearable with sitting and laying on my back, like a burning knife in my perineum. It would always get worse as the day went on. The surgeon that I found performs an EMG on the pudendal nerve before and after the surgery. They can only do this by cutting you open and that is the only real way to get any information on how your nerve responds. My nerve was very compressed before the surgery and responded much better after but I am only 1 month into a 6 month recovery. I hope this is not the case for you, but if the pain is unbearable every day, I would think that your nerve is compressed to a certain degree.
Stanley, I've had PN for 2020, but have mentioned to many that I cannot imagine a male with PN, us women are used to dealing with issues in our nether-region, but for a man to get PN, it must be the worst. I appreciate your knowledge of the condition and the research you've done on the surgeons, I'll keep you in mind if I ever choose to go that route. I really need to book an appt with either pain management or neurologist to move my healing along. I'd love to find a pelvic floor physio who knows what they are doing, maybe I'll work on that after the new year.
I look forward to hearing about your recovery.
Who was the doctor and where
Dr Chris Lakhiani from New Jersey
Hi Stanley!!! I just read your post and I’m curious about your symptoms u had with PN? Im at my wits end!!! I’ve tried EVERYTHING but nothing has worked!!!! Who r the doctors who do decompression surgery? My pain was pretty much rectal but now is perineal and vaginal and BURNS like all get out!!!! NOTHING controls it!!!!!! I’ve tried ALL the meds but they don’t work! Had a pudendal block through the rectum and that didn’t help! Had Botox everywhere in the rectum and sohincter and didn’t help!!! I even had a colostomy to help with the burning but that made everything WORSE!!!!!! Im so over this shit!!!! Any ideas? Im seeing a new pain doctor who deals with nerves and spine just like my other pain doctors but maybe this one can help!!!! Im completely lost now!!!! Im hoping u can give me some info!!!! Thank u so much for posting!!!! I hope we talk soon!!!
My symptoms included a burning/stabbing sensation in my perineum that often radiated to my testicles anytime I would sit down or lay down on my back. Always gets worse as the day goes on, but completely unbearable to point where I haven't socialized all year and had to start working from home. The least painful position for me is laying on my side. I had a bilateral pudendal nerve block which did numb my nerve and make the pain go away for about 8 hours. If you are located in the US, I'd highly recommend speaking with Dr Chris Lakhiani. He is based out of New Jersey and he has a lot of experience with PN and the decompression surgery. I just had mine done a month ago and it takes about 4-6 months for the nerve to heal so I am still in a similar level of pain that I've been in all year but hopefully improving soon. Here's a link to their website below. Let me know if you have any questions. This is the worst type of pain I can Imagine so always here to help anyone else who is suffering.
advancedreconstruction.com/...
Hi Stanley! Thank u SO much for reaching out to me!!! I appreciate that SO much as any information I can get is so helpful!!! My symptoms r burning and spasming all the time!!! I have tried EVERYTHING there is for pelvic pain! It is unreal that nothing has worked! I have an implanted pain pump but we haven’t found the right combination yet and I’m getting frustrated!!! We have to drive quite a distance for pump refills but hopefully someday it will help! Mornings r my worst time as I get up and the pain is ridiculous!!! It feels like a ball is in my ass all the time and the burning kills me!!! The spasms hurt like hell!!! I don’t know what to do anymore!!! If u think of anything to help me please reach out and let me know!!! I will try anything at this point!!! Thank u once again!!! It means a lot that u have reached out to me!!! Please take care and hope to hear from u!!!
I just wanted to let you know that 2 kinds of muscle relaxants have helped me with the pain - thiocolchicoside + clonazipam. I am including the composition since the brandname differes from country to country. My research tells me that colnazipam is mainly used to treat anxiety + panic attacks, but it works really well for me for controlling my pain symptoms. Much better than nortryptiline+ pregabalin and also better than Dulexotine (40 mg) which I am currently on. It seems like a lot of it is hit and miss in terms of medicines, physio etc. As someone else has also mentioned warm water baths help in relaxing muscles. So if you can sit in a tub of warm water for 20 minutes, you will get relief for at least the next 1 hour. [in my case this is true]. I am so sorry to hear how much you have been suffering - the quality of life with this illness is so poor, and the pain is indescribable, so my heart goes out to you. Take care!
Hey Karen, sorry to hear how much you've struggled with this. The burning and feeling like something is in your anus is very similar to what I felt so I would guess that your pudendal nerve is involved in some why but I'm not a doctor. My best recommendation if you are located in the US is to reach out to Dr Lakhiani. I've seen a ton of different doctors this year and they were all clueless. He was the only one who actually understood what I was going through. He offers virtual appointments and has a lot of experience with people like us. Please let me know if you'd like any help connecting with his office. Take care.
Hi Stanley!!! Thank u for the kindhearted message!!! It touched my heart for sure!!! I would love finding a way to touch base with him!!! I’m at my wits end now!!! I’m seeing another pain and spine specialist on Thursday so I hope she can help!!! This is just too much to handle!!! Having to have shoulder replacement surgery is not what I’m looking forward to either!!! Now I have two spots on the top of my head that I need biopsied too!!! I’m just a mess! My left lower back is hurting also so getting an mri on that too!!! It’s becoming too much!!! I’m also getting a trial for the saluda stimulator on Monday for the pelvic pain!!! What more can I do? Lol. Let me know what to do about reaching dr Lakhaini (sp). It would be greatly appreciated!!! How did u get out of pain and what did u have? I’d love to hear your story!!! We ALL have a story and I’d love to hear yours! I can’t wait to hear from u!!!! Thank u again for trying to help me!!! It is greatly welcomed!!!!!
The offices number is (833) 615-2618. Ask if you can schedule a virtual appointment with Dr Lakhiani regarding the pudendal nerve. They did ask me for this list to move forward.
MRI Lumbar Spine Written Report
MRI pelvis Written Report
CT abdomen pelvis Written Report
EMG Written Report
Any injections/nerve blocks Written Report
Any last progress notes from your Urologist
I started having severe pain in my perineum when sitting and laying on my back in January. Also uncovered that I had a slipped disc in my back pinching a nerve so being on my feet became very painful as well. Least painful position is laying on my side. I'm 31 and I had the back surgery in August and the Pudendal decompression surgery in November so its been a tough year. The nerve surgery takes 4-6 months to heal so Im still in a lot of pain but only time will tell how much it will help and results are not 100%. Im upset that I did so much damage to my body at such a young age and im in too much pain to enjoy anything social so for now my life is on pause and I just have to fight through every day. Also have upper body nerve issues but I can only tackle one thing at a time. Hoping that this experience will make me stronger in the long run but I wouldn't wish this type of pain on anyone. Let me know if you have any questions about the surgery itself. STAY STRONG! NEVER GIVE UP!
Hi!!! U need to stay strong cuz u have been through SO much!!! I’m in AWE of u having to go through what u have at such a young age!!!! Please don’t be too hard on yourself as I don’t know what u think u did to yourself but we all do stuff to ourselves that we might not have known how it could affect us!!! I am 69 and have been dealing with this for 10 years! I know mine isn’t from my dumb things I did when I was younger!! Mine was due to a rectal exam with an anuscope that triggered my levator muscles to start spasming so I blame that doctor cuz that did it and im pissed but I can’t do ANYTHING about it as im still dealing with it!!! I just saw ANOTHER doctor and she thinks it’s my pudendal nerve that’s doing this shit! I don’t know anymore!!! Im going Monday to Napa for another stimulator trial!! If this doesn’t help im hoping the pudendal block will!!! U r a strong man and I know it doesn’t feel like that but believe me I know what all that feels like except for the back surgery but I have severe degenerative disc disease with my L5 and S1 and my back hurts ALL the time! I’ve already had three neck surgeries on my neck so I can’t do surgery on my back!!! I CANNOT believe what u have insured!!! It’s just CRAZY!!!!! Do u work? If u do I have NO idea how u do that!!! I got on disability because of my IBS cuz I couldn’t have worked! I’m sure u can’t either at this point!!! Where do u live? I hope u know that I will be here for u and will try and help u through this!!! It might be weird to be talking to a 69 year old woman but who cares as we all go through shit so I’m here for u!!! I hope u can feel better soon and have a normal productive life as u deserve that!!! We ALL deserve that!!! Please take care and I hope I hear from u soon!!!
Stanley, I didn't read this post until after I responded to your post above, OMG!!! you have a New Jersey doctor, I live in Neptune and will be contacting him shortly. Wow, its my lucky day. thanks.
Yes, Dr Lakhiani is based out of Shrewsburry, NJ and from my research and personal experience, he is the best person to talk to if your pudendal nerve is involved. I put the link to his website in my other post but let me know if you need it or any help connecting with them or have any questions in general. No one deserves this type of pain and I really hope you find relief soon.
try swimming in the sea as for me it takes my pain down 5 notches. Heaven!
After decompression has the pain improved?
Im only 3 months out of surgery and it can take the nerve a long time to heal but the pain has started to improve a little although its still far from livable at this point. Hopefully it continues to improve.
Does the pregabilin and nortryptyline work better than gabapentin and amitrptyline ?
Yes, it did work better. But now the pain management specialist thinks it is not PN although I have all the classic symptoms - pain when I sit, vanishes after a good night's sleep also pain free when I walk. He thinks it has to do with contracted pelvic floor muscles. I don't agree with the diagnosis so might take a second opinion.
I agree. Get another opinion.
I was on pregabalin for 3 years and all I got out of it was sores on my arms that were itchy so I stopped taking it and it made no difference to the pain. No painkillers work for me only swimming in the sea and sleeping. Norma
Hi Moonsorrow
Pregabalin works to stop me feeling so anxious about it all but did not totally stop the pain
I have recently read The Way Out by Alan Gordon and I have found it very helpful
You have to open your mind to it .. but for me it is working (at the moment)
Good Luck and let me know how you get on
Reindee
I had the same thing happen. Had a vaginal infection that no one caught. By the time I had it diagnosed, my pelvic nerves were shot. It’s been almost a year and I’m still dealing with pelvic nerve hypersensitivity, though the pain is no longer a daily thing. I take gabapentin and amitriptyline daily. I do take two different bladder medications as my pudendal nerve has led to overactive bladder. I use a heating pad across my bladder for a couple hours before bed as it helps my bladder to relax enough to empty it before bedtime. It’s been a long journey so hang in there. It does get better with time, though my doctor thinks I may never get back to “normal”. I miss being able to sit but things are so much better than they were!
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