Hi everyone, I'm new to the site and it's been a big help to hear all your stories, especially as no-one seems to understand this condition (Pudendal Nueralgia). I have had the most shocking pains in my vagina and bum and sometimes lower ab region. Cannot sit down for longer than a couple of minutes, My life has completely changed from working out and having a full time job so laying down all the time and trying to work out how on earth I'm going to fix this while situation. The doctors are clueless, the pelvis physio was useless too, now waiting for a gynaecologist app and then an app for pain management. I don't want to take ameytriptilin or gabapentin as I've heard so many horror stories about them and it seems like they don't work anyway. I take cocodamol which helps to relax my lower back and bum muscles somewhat but obviously doesn't touch the nerve pain. Finding it a bit difficult with people who just don't understand the condition and I feel like people think I'm just lazy and putting it on. I'm lucky that my partner understands and thankgod has stuck with me and helps me with massage and just making me laugh when I'm being a right Debbie downer. Live in Surrey UK 46years old. Really feel for anyone else out there suffering with this especially if you are in you own or have kids to look after. Would love to hear any stories, info on treatments etc. Doesn't seem like anyones received any help via the NHS and even if you fork out for expensive private treatments it seems like that doesn't work either. I'm thinking if getting nerve ablasion and would love to know if anyones had any luck there, also how much does the decompression surgery in farnce nantes cost? X
Pudendal Nueralgia Newbie: Hi everyone... - Pelvic Pain Suppo...
Pudendal Nueralgia Newbie
I live in the US, so can't help with NHS. I have been dealing with Pudendal Neuralgia since 2009. I had high blood pressure (from pain) for the first 5-6 years. My blood pressure is now back in the good range 110/70. I have tried many things throughout the 14 years. I had a Pudendal interstim - it helped for about 2 years and then stopped. I had PT, it helped with gaining back muscle and trying to relax pelvic floor, but I don't think it really helped much with pain. I couldn't tolerate any of the nerve drugs or the antidepressant class drugs. I did try them all. About 2 years ago I started radiofrequency ablation of the Pudendal nerve and that gave me a pain free time of 3 months after the first one. Following ones were not as successful, I'd say more like 50-75% relief. I have been getting botox shots for 12 years into the pelvic floor, it did help. They are excruciating to get, but for me it was worth it. I have the same pains you mention. I am about to try a new treatment - Sola Therapy. My doctor thinks this will work better than botox and definitely won't be painful to get. I am hoping it works really well (it is hard to get your hopes up after dealing with it for this long). I have gotten back to workouts last fall. I had to stop workouts in May 2009 and it wasn't until 2022 that I was able to start doing exercise. I started with walking. In March, 2023 I did the first workout I have done in a long time. I keep gaining overall, but it is a two steps forward, one step back process. I'd like to get my workout to be more regular, but I have to work with what is. I'm really happy I can workout at all. My doctor is surprised I can do it at all. I'll post on how the sola therapy works (infrared radiation applied through the vagina). I have my first visit the end of May, then 3x a week for 9 sessions. It is supposed to last 9 months or more. I am also continuing radiofrequency ablation every 6 months on both pudendal nerves. Hang in there, it will get better eventually. Everyone who walked this journey with me over the last 14 years, has gotten better than they were. I ended up with oxycodone and Valium- it was a life saver in the beginning. I recommend getting off when you can tolerate the pain. I was bed bound, using a wheelchair as I wasn't able to walk or sit. I got all kinds of stabs throughout pelvic floor. Learn as much as you can about this, learn your anatomy. Doctors generally don't know how to help or where to send you. As I learned all about it I was able to give a much better verbal presentation and ask better questions which I think helped immensely. Doctors are not as invested in our well-being as we are! I pray you find the help you need. I hope this helps.
Thank you very much for telling your story. I think you must learn anatomy and study a lot about the possible treatment methods to get any attention from at least the public health care. Most doctors know little if anything about pelvic pain. It's difficult to find competent doctors even in the private sector.However in the long run many of us get better, at least it's possible to manage the pain to some extent. In most cases you have to do your own research to know what to ask for starting from the medication and examinations.
This is a horrible condition. I wish doctors be more interested in helping us and study the causes of pelvic pain to be able to help us. Untill then you have to do it yourself. Good luck.
I totally agree. One other thing that is sad, but true is I got much better help from doctors when I brought my husband along. They couldn't blow me off as easily. Bringing an advocate with you forces them to at least listen.
Great advice…,bring an advocate. Doctors tend to believe this neuralgia is all in our heads when it isn’t.
I agree!
Good luck with the Sola Therapy. Yes please do keep us posted. I’d love to know how you do over the three weeks. It looks very promising.
Hi Jobie, I have had Pudendal Neuralgia for about ten years. After trying drugs you mentioned I have found Pregabalin (3 times 200mg) during the night allows sleep. During the day I'm distracted.
contact Dr Gareth Greenslade at Bristol Pain Clinic as your first port of call. He will either prescribe suitable medication or treatment or refer you to Nantes for surgery.
I saw Dr Micheal Hibner At Arizona center for chronic pelvic pain at Scottsdale. He studied with Dr Roger Robert in Nantes. He diagnosed that my problem was a muscle that is putting pressure on my pudendal nerf so he suggested Botox injections or medication in a suppository which I put in my vagina morning and night every day. I choose the medication. I am 70% better than I was for the last 4 years and I am on this medication for 11 months now. I still take gabapentin 300 mg three times a day for four year now. I had tried to stop it two years ago and the pain was worse. I am going on my 70 so I don’t care if I can get addicted on it because life is two short to tolerate such an awful pain. I still get flare up once a while but not as long as it used to be. Everybody are different. I juste want to share my story with you.
HiI have never heard of the medication suppository. Do you know what this medication is called please I'd love to look into that more. Pleased thats given you some relief. I've heard of the botox injections, have you tried this yet and is it painful?
Jodie x
hello..I am not going to go into my story but will tell you after a corrective surgery 6 years ago I was left with this horrid condition..I tried every drug you can think of and nothing helped and the side effects were nasty…so this is how I got my life back yes I was on the sofa for 2 years 😢…when I say I got my life back please understand there are things i will never be able to do again and I had to accept that and be great full for the things I can now do and yes live a new normal life but mentally I had to accept this before I could even start to heal…..start by reading the book by Amy Stein “Healing Pelvic Pain”.. then get the dvd by Dustine Miller “ Your Pace Yoga reliving pelvic pain”…when I tell you after 2 years of lady therapy.. nerve blocks and again at least 7 different drugs these are the two most important things that have worked for me …I can now sit up to 2 hours at a time…I am no longer able to have a sitting job and can only work part time …I also take valerian root and hops this is a nerve tonic…I am no dr….but it has been my personal experience that they were useless to me….please do not misunderstand me i know we need the medical profession but for my person dealings with p/n they were useless…over the years I saw over 10 different specialists..I had to jump off the merry go round..I truly hope this helps you …this was my personal journey..this horrid condition seems to be so individualized…find a good herbalist….wishing you good health ☺️
hi pizon!!!! I’m in the same boat u r but possibly worse but whatever!!! Did u try sola therapy? I’m looking it up and so willing to try!!!! My recent hope was implanting a pain pump but the dosing isn’t right with the muscle relaxer so have to wait until my refill date which is June 1!!!! I’m checking out the book and the yoga treatment!!! I can’t do anything at all!!! I have SEVERE levator ani and NOTHING has helped in the last few years and I’ve tried EVERYTHING there is!!!! I can’t tell u how many things!!!! How much is the sola therapy? I’ve even looked into the Wise Anderson protocol but that’s like $5000 but I’m willing to do it if it will help!!!! I CANT do this anymore!!!! I’ve been pushing through my life for years and I’m tired of it!!!! I’ll do ANYTHING at this point to get relief. I even had a colostomy hoping it would help but makes me feel like I have to poo ALL the time and it’s frustrating and it HURTS!!!! I’m at my wits end!!! How did u get all this pelvic crap? Mine started with a rectal exam in 2015!!!! What a HUGE mistake!!!!!!!! Anyway I hope we can talk again cuz I’d love to hear from u!!! My email is mandykl1234@yahoo.com. Take care!!!!
Thankyou so much for the info. I will order the book and DVD today. I have found a good CBD oil helps with sleep and I now have a really strict Keto/low carb diet which helps with smaller nerve pain although does not help the Pudendal Nueralgia unfortunately. I'll look into the valerian and hops for sure, do you take these in the day for pain relief? Or is that mainly to help you sleep at night?
All the best x x
good morning I take the now brand valerian root 2 caps of each up to 3 times a day..it eats my pain some days I only need it at bed time but it truly helps me…start slow I get them both on Amazon…I am in the states and get medical marijuana..I use it at bed time yes please stay in touch..oh yes I also use a hot water bottle at bed time between my legs and an ice pack on my hip…my pain is left sided
Thanks so much, I've ordered some valerian so hopefully that'll mean I can ease off the pain killers. I use full spectrum cb oil for the pain too mainly to help me sleep through the night and same the ice packs on my butt cheeks are a life saver! Take care x
7 years in with this and my answer has been ice packs when sitting and biofreeze spray, which you can buy in any pharmacy. I still attend for NHS appointments and have just had pudendal nerve pain steroid injections, which numb everything for a few hours.It still hurts but my go to home methods, the ice and biofreeze are my constant relief.
Good luck with your journey....
Are your sensitive parts OK with the menthol in Biofreeze? Does it sting at first? I’m glad you are getting some relief!
Oh yes, it makes your eyes water somewhat and stings for a few seconds, but then relief for several hours.
Thanks!
do u spray the bio freeze up your butt?
No - up my minny!!! Takes your breath away!!
can u spray up your butt? What’s a minny? Lol
My mum's word for my private bits, when I was little ! You can spray wherever you need it, but I'm not qualified to say you should....but if it helps, why not? It does sting a bit but grit your teeth and wait....bliss!
Oh dear, god bless you you must be really suffering to have to biofreeze your bits on a regular basis. I've had to get the icepack out on occasions myself and it does give some relief for sure. All the best x x
Oh my goodness I have just joined this forum because of bowel prolapse and thought I was the only person in the world with this sort of condition. Now I find that it is so common and there are millions of people trying to find relief from pain with various conditions in the nether regions. It all sounds horrendous but having had a heart condition for many years and finding such help with the AF forum I am sure I will be able to find the same help from our posts on here.
Hello and thank you for your post and everyone's comments, willing to try everything. Will definitely get the book and DVD. I have taken amitriptyline and it had some nasty side effects. Now I take pregabalin but only 150 mg at night as it makes me too drowsy. Listening to healing frequencies with headphones helps me as does meditation and reiki. I have been thinking about infra red treatment so will look into that Sola therapy. My friend had given me a spooky 2 machine which is a scalar energy device but I need to do some research first to learn how to use it so will let you know. The NHS have passed me round on waiting lists for 2 years and before I have even been seen by anyone a nurse has phoned me and told me they don't really know what is wrong with me or what to do with me. The doctors told me it was coz I was old when I was only 59 and amazingly fit and healthy until this nightmare. Now they tell me to stop bothering them coz I am under the No Hope Service and they have told me they don't know what to do with me, I feel they have made me worse. Stress makes it worse. I have had 2 appointments with an osteopath and am waiting to see a herbalist. I really believe you have to take your health into your own hands so I am going to stop going the hospital and the GP, I find out more on this website, they have done nothing for me. I have had counselling and pain management. Now I am trying to learn to live with it and get some new ideas.
Please keep us posted on how you get on with this spooky device, I'll have to look it up and do some research myself. It's heartbreaking to be discarded and misunderstood by these so called medical professionals. The only things I've found to help me is keeping a really strict low carb diet, that helps to take down any inflammation in the body which can help relief tight muscles that might trigger the nerves. I also have peripheral nerve disease and atrophied muscles which they have diagnosed as Fibromyalgia and the diet helps these conditions no end so worth a shot. Keep us posted on how you get on.
God bless x x
what type of device r u going to try? I’ll try anything so please let me know!!! I hope it works!!!
Sorry to hear your story - this is a long and horrible journey but there can be a good ending if you find the right docs and physical therapists. After 5 or 6 years I finally feel somewhat normal. I can sense when my PN is going to flare up and figured out how to calm everything down in a day or so. I recommend you take a look around this site for help: pudendalhope.info/ I also recommend reading this book " A Headache in the Pelvis". I think you can find it on Amazon. Good luck in your search to feel better!
Just ordered this book, thanks x
Reading the book made me realize I wasn't nuts - the condition is real!
I'm going over to Nantes for the surgery in a few weeks. About 4500 euros. Extra 50 euros a night if you want a private room.
Good luck.
Thank you. I'll post when I feel up to it
how do you get in touch them,interested
Hello, send an email to Douleur@groupeconfluent.fr. Attach a chronological summary, about half a sheet with dates of when it started, symptoms, procedures you've had such as nerve blocks, medications you've tried and are currently taking and attach any scans or reports. Mention you heard about CHU Nantes through this website. If you don't hear back in 2 - 3 weeks come back to the site and the administration team should be able to help.
Thank you.
Thanks for the info, let us know how it all goes. Good luck x
Hi I'm on number 4 prolapse,I have had a hysterectomy and virginal repair and recently mesh to hold my vagina up (it has now been cancelled on the NHS and only used as a last result),I have had all four types of prolapse,now I'm going to ask them to remove my vagina as I haven't been able to have intercourse for at least 14yrs due to the pain and discomfort along with the stress and urge inconvenience I have been left with,I also have fibromyalgia and a whole host of other medical conditions,good luck with your health and hope you get some help soon
It’s really important to avoid sitting if your pudendal neuralgia is bad. Do you have a firm sponge toilet seat ? Do you stand most of the day or do you lie down?
I had severe PNE that involved sacrosphinous and sacrotuberus ligaments. I paid for every possible alternative treatments myself to no avail.
I’d been extremely athletic all of my life and I’d done hip flexion activities during 12 years of practicing ballet ( to the teaching level ), at my job for 30 years ( bending over my groin constantly ) plus in my home and garden. I’d also had four pelvic surgeries ( 2 laparoscopicies, a C-section and a tubal ligation using Filshie clips.)
My GP and every specialist she sent me to didn’t believe me, they didn’t examine me and I was abused and mistreated.
Not one doctor in Vancouver, Canada listened to anything I had to say. I know my body. The Pain specialist did NOT follow the Standard of Care in her treatment of me.
I was told by my GP I’d be seen in a Pain Clinic. I was seen in a ‘ Medicine Ward. At no point did I fill out ‘Pain Clinic Intake Forms’, I had no voice. My nerve blocks were done incorrectly to.
I was misdiagnosed with vulvodynia and cyclothymia🥲. The doctors left me in agony unable to sit or sleep. None of the meds they prescribed helped me or agreed with me.
I had to find out myself who in Canada knew about this. I saw a neurologist in Toronto in June 2009 ( after 15 months of standing on orthopaedic shoes all day ) and he diagnosed me with atypical pudendal neuralgia. He kindly referred me to the best pudendal neuropathy specialist in Minneapolis, Minnesota.
I saw the expert, Dr. Stanley Antolak, in late September 2009. He did a proper transgluteal nerve block into the nerve roots using both anesthetic and steroid. I sat pain free for the first time in 21 months! He proved I had pudendal neuralgia and he sent me home with a diagnosis and treatment plan. ( 3 more fluoroscopy guided nerve blocks done a month apart and if that didn’t help I needed decompression surgery)
I saw my GP shortly after I came home and she was furious! She DID NOT believe Dr,,Antolak. She also told me my Pain specialist had dropped me. Why? I had a right to advocate for myself and I was assertive.
I ended up neglected, I became a victim of poly pharmacy and I lost cognitive function. I also lost my job of 31 years!
On death’s door in late 2010 from severe sleep deprivation and lack of pain control I prayed for an advocate. I knew I was going to die soon.
By divine intervention I met a registered nurse consultant three days later. I hired her in May 2011 after two more doctors blew me off ( they all commuted fraud ) and the nurse procured my decompression surgery in September 2011.
I had my surgery in November 2011 in St. Paul’s, Minnesota. Dr. Antolak found the nerve pinched in three places. The surgery saved my life and spared my sanity.
I needed surgery to remove migrated Filshie clips as one was left on my rectum and another was left in ileum bowel under the neck of my bladder. The doctors knew the clips had migrated in 2008 when this all started and they covered it up and didn’t help me. I’m certain the clips made my neuropathy worse. They were finally removed in 2017 and 2018…years too late.
I am recovering from severe Central Sensitization syndrome. I only take two meds at bedtime and a muscle relaxant when needed. The burning 🔥 pain is gone and I’m sitting longer and longer. It’s been quite the journey. Not one doctor where I live apologized or learned a thing through my case. They just don’t care.
I had what they think was pudendal neuralgia from nerve damage from vaginal delivery in 2010. I had a very difficult situation and can repost later when I have more time. I wanted to post quickly that there’s recent evidence to support trying dorsal root ganglion stimulation in PN that has failed other treatments. DRG stimulation is apparently I think being shown to be more effective than traditional spinal cord stimulation in initial trials. I know there’s a pain medicine MD in NYC who has been involved in the FDA trials. I was on amitriptyline, gabapentin, duloxetine, Venlafaxine, topiramate, got experimental surgery, & almost needed a spinal cord stimulator.
Dr Corey Hunter, Ainsworth Institute in New York City
He’s the MD who has published articles on DRG stimulator for chronic pelvic pain (very hard to target with traditional spinal cord stimulation)
If mine ever returns to how bad it was, I’m inquiring about DRG stimulation & pushing for Pain Medicine to bypass other procedures to go straight to neuromodulation. I can’t endure the psychological nightmare of blind nerve blocks, med trials, etc.
i can understand everything that you are going through as i have been through it myself ,also lucky enough to have had the nerve release operation which worked i would say 90% still took gabapentin and amitriptyline but i got back to training and normal life until about 1year ago ,i seem to have trapped it once more and getting severe and burning pain in area you have printed ,so hoping to see Mr Baranowski in london again ,so hopefully there is no hassle with doctors as i did the first time i had the problem took nearly 10yr to get it diagnosed
HiThanks for your message, I'm still having a nightmare with the doctors and gyno, neurologists being passed from pillar to post and no-one seems to know what they're doing. Total lack of communication and knowledge of this condition.
So can I ask where did you get the operation? And how long did you have good results before the pain came back? That's such a shame that you had the op and now its back again, do you have any idea why that's happened? X
Hi I have just noticed your message ,just getting used to this site, the operation was done in London in the NHS I had one side done one month and the other side the next month this was because I was travelling by train a few hours from London.The operation were a great success as I work offshore and went straight back to work after 2cl weeks rest both times that was in 2009 and now I've trapped one side again as the pains are the exact same as the last time.
Wow thats the first I've heard of have decompression surgery on the nhs in this country. If you recovered so quickly i'm guessing you didn't have your sacrotuberous ligaments cut then as this is what they seem to do at the clinic in France which has a huge recovery time. Sorry to ask so many questions but any idea on the type of surgery you had and how they performed it? Trans gluteal or vaginally? Was this decompression surgery where they release the nerve from the surrounding tissue? Thanks i swear that's the last of my questions 😂 and thanks so much for getting back to me x
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