Pudendal neuralgia

[Sallyb67]

Hi I have had pudendal neuralgia for some time now ,I am taking 50mg amitriptyline twice a day and Tramadol ,I have found since being on hrt that things have got worse and my pain is usually from afternoon to evening ,when at it’s worse I just go to bed as I can’t get comfortable ,and can’t have any clothing touching me down below as it makes things worse ,I was wondering if I could ask my doctor for a different medication as this isn’t working anymore ,any suggestions please .Many thanks .

[McGraw]

Good idea if it doesn't help your pain! Have you tried pregabalin? Sallyb67

[willemine]

Hi Sally strange to read my own story also laying in bed in the afternoon and evenining pain is in the morning low. Can also have no close on my but and legs be ause of neuropatic pain . I have 10 mg amitriptaline and 40 mg oxycodon. But oxycodon has a very bad image now . My pain is also raising each day can t get it under control i am disabled because of it and list my job and lots of socialising . I go twice a weak to fysiotherapy to train my core body so i can sit better on a yoga bench ( see photo ) thats the only way i can sit on my knees on a bench with a swimming planket on top of it with a hole in it. Try not to sit for a few days maybe the pain calmed down a bit. Because i don t sit i can funcionate 3 hours in the morning . Compassion for you i feel you and know it so well the pain . Some times its unbareable and it makes you suffer. Its very important to stay menthaly fit to partisapate on the pain. When my spirit is strong i can carry the pain better.

[pizon]

I like you found taking the medications made me worse...I started yoga “your pace yoga reliving pelvic pain” by Dustine Miller also the book by Amy Stein I believe it is called Curing pelvic pain I am also working with an herbalist...I am still not able to work at a full time job but with the yoga and meditation I am able to live a better life I found the more the dr.’s tried to help me the worst I felt...I hope this is helpful and wish you luck this is a horrid condition and is so misunderstood I also find taking valerian root and hops up to 3 times a day helps the pain I still have to lay down at night but feel better now then I have in a long time....I am no dr. Just found this type of treatment is so much better for my body then what the dr.’s had to offer I truly hope this is helpful take care

[RobertVerde]

I suggest going to Physical Therapy and second Pregabalin. Here is a link to find PT's that specialize in PN - pudendalhope.info/node/63 - Good luck!

[Patspart]

I also have pain that keeps me on the couch. I take Tramadol during the day, but at night I take a new pain medicine called Nucynta. It acts differently in the brain so it doesn't cause brain "fog" or other symptoms caused by regular opioids. It does cause drowsiness, which is why I don't take it during the day.... but most people don't have that problem. I would rather my mind be clear and have a bit of pain during the day.

[Sallyb67 in reply to Patspart]

Thank you

[dad3601]

Hi Sally I take slow release morphine for pain. For hereditary spastic paraplegia and gabapentin. Which I feel curbs the pain

[Sallyb67 in reply to dad3601]

Thank you

[Ailiesonkerr]

Hi Sally I read your post just now with interest. I have had pudendal neuralgia/neuropathy for 3 years now..... It came out of nowhere, initially they thought it was vulvodynia and then I was sent to see a pain management specialist and he was first to mention pudendal nerve and pudendal nerve entrapment/neuropathy. The only way he said to know for certain was to have a pudendal nerve block, but I have read some people been worse after having that, so did not want to go down that route.... I think it was caused by vaginal atrophy and I sit at work all day long and eventually it was so bad by end of day I just wanted to cry my eyes out... it is like someone has poured acid/moulten liquid over my left buttock and thigh. I could not wear tight clothes, tights, also went onto buy XL underwear...... I am also on amitriptyline and then went onto HRT patches, therefore I was very interested to read your post that you think HRT makes it worse? As I feel now that the amitriptyline is not working...... I wondered if botox injection would work or if I need to think about changing from amitriptyline..... Like I say I sit down all day at work. During pandemic as working from home it was not as bad, now I am working every second day and it is getting worse. I have taken note of suggestion below by someone about new medication called Nucynta, so I am away to look that up. I hope you have found something to help you. x

[Desperateforrelief]

Hello, I have pudendal neuralgia of both nerves. I was injured by a transvaginal mesh sling in 2009. I started with severe urethra pain (sling shrinking). A urologist cut the tape because it was way too tight. After that, it was like cutting a taught rubberband- the mesh went everywhere. I was in a wheelchair for 4 years following the cutting of the tape. I have since had 22 surgeries to remove the mesh and repair the damage. Getting the mesh out helped a lot. But didn't help the nerve damage. I just got a pudendal nerve block about 2 weeks ago. I have been pain free since! It wasn't a diagnostic block. I did try sex a week ago and lower vaginal/labia/clitoris pain shot up, it is finally calming after a week. My bowels are working better, my bladder isnot at all functioning. I cath 80% of the time. My bladder does not "squeeze" anymore. I get botox injections (200 iu) every 3 months. I get good results, but not consistently excellent. I think the combination of botox TPI's and the non diagnostic PN bock have caused me to be pain free (excepting sexually) for the last few weeks. It is a miracle, I have gone from not being able to sit, stand or work to working on my daughters new home from 10-8 for the last 5 days. I am grateful to God that He brought me to this doctor. I am getting bitox shots again this upcoming week, followed by a radiofrequency ablation of the pudendal nerve. Also, I have tried an interstim to the pudendal nerve. It worked great for about 2 years. My friend (injured by mesh too) is still getting excellent results from the interstim. I am now lowering my pain medication. I can't tell you how happy I am!! Such a relief after 11 long years! Thank you Lord!

[layla1223 in reply to Desperateforrelief]

Desperateforrelief I am having a diagnostic nerve block on Friday and if it works the ablation too. Did you get the ablation yet? How did things go? Thanks.

[PudendalNightmare in reply to layla1223]

I had a Diagnostic Pudendal Nerve block last month and I had immediate relief that lasted just over a week. It was totally worth it. My response (relief of pain) cemented my diagnosis and at least the docs believe me now. They just have no idea how to help me. Good luck hon.

[layla1223 in reply to PudendalNightmare]

The diagnostic block helped me too but when I got the cryoablation it did not work, my pain was worse than before I did the diagnostic block. I ended up going to a pelvic specialist in Chicago who ended up giving me vaginal suppositories (with multiple medications in them) and after 1 week my pain was 80-90% improved, it was such a relief!! I continued with a new physical therapist who also worked on my sciatic nerves and I have been doing very well for the past 3-4 months. My pain is a 1-2 from an 8-9. I no longer need the suppositories and only take amitriptyline at night. I can send you the ingredients for the suppositories if you would like, they saved me!