How to cope with pudendal neuralgia anxiety?

[2977reader]

Hi, diagnosis of pudendal neuralgia four months ago. Finding people around me just don’t get it. Partner thinks I should just adapt and avoid sitting. Don’t find much sympathy for this strange, challenging condition. How do people deal with the anxiety that comes from living with this condition long term?

[kalecolbe12]

A lot of us are on anxiety meds which incidentally also improve the pudendal neuralgia somewhat I find my biggest help has been with cyclobenzaprine muscle relaxer and it calms everything down and improves your mentality a little..also pelvic floor pt...you might want to think about going to a medical psychologist.... since I've gotten this off/on i found so many new areas of medical help ..there is medical hypnotherapy which some people are trying and medical psychology

[kalecolbe12]

Sorry I meant since I have gotten pfd which involves pudental nerve...question..where do you have the pn?as we know it can be rectal,vaginal,pireneal...etc...etc...it innervates both men and womens pelvic floor

[swarke22]

Are you female and where in the world? Please look into prp treatment. See utube Dr mayo friedlis Pelvic pain in women. Private message me if you want to. I am having the treatment takes a while to work I will let you know my progress. Unable to sit is mind bending and awful.

[2977reader in reply to swarke22]

Hi, thank you for your reply. I’m in the UK. What type of treatment does Dr Mayo offer? Am interested in knowing about every possible treatment Avenue. Thanks so much

[swarke22 in reply to 2977reader]

I’ve had this nine years and my chiropractor found my pelvis was wobbly. Loose ligaments caused by trauma. Dr Mayo Friedlis thinks that many of these cases are stretched out pelvic ligaments. I went to the only U.K. Regenexx clinic near Birmingham last week for platelet Rich plasma injections into my sacroiliac joints/ligaments and pubic symphysis joint and ligament. It takes a while for things to work but I will be posting back in a few weeks/month time with updates. Regenexx is the only machine that can make the platelets condensed enough to heal. Algocells is the business name but of course this is not on the nhs yet.

[Dee8 in reply to swarke22]

Great info thank you. I will check this out. I now have a biting pain in lower buttock 😖 on top of PN. Related I think . Thank you

[Montysputter]

Hi,

I have had Pudendal Neuralgia for 8 years, my main avenue for pain relief are Pudendal Nerve Block injections which are administered by Dr De Mello's team at the Pain Management, Bagley Suite, Wythenshawe Hospital, South Manchester England. I also have planned Botox injections to my perineum area in a couple of weeks.

You can try and educate your family and friends (pudendal hope website), which may help them have an improved understanding of the condition. A problem shared may decrease your anxiety.

I take it one day at a time, keep a half full mentality and be as positive as you can

The very best of luck with the management of your pain and anxiety.

Good Luck

[2977reader in reply to Montysputter]

Hi, thanks so much for your reply. Did you suffer with different symptoms after the pudendal nerve blocks? Such a difficult decision to have them. I’m in a London but am happy to travel to see Dr Mello - people say good things about him. Are blocks CT guided? Thank you

[Montysputter in reply to 2977reader]

Hi,

I shall try to be brief and concise, All my PNB's have been guided by Ultrasound, in the main my pains have reduced by circa 60% for a duration of some 50 days to 70 days, which has been a godsend. Putting aside the 'numbness' for the 1st day or so, I have not suffered from any additional symptoms. In addition, I use a ring inflatable rubber cushion, I cloak mine with a black pillow case. Once you have overcome any embarrassment (in public) again it assist's me no end and allows me to enjoy travelling. best regards

[AlexA810 in reply to Montysputter]

I was diagnosed 3 months before going to Disney World. I cloaked my blow up ring cushion in a drawstring bag. I was beyond getting ambarassed.. the condition is awful so I didnt care what anyone thought, I just needed to function. So that helped, plus amyltryptaline helps me loads (but it doesn't work for everyone).

[Konagirl60]

I had true entrapment. The rear inferior rectal nerve had been stretched my a migrated titanium metal Filshie clip.

You’re right. Juxtaposed over used ligaments cause the stretched rear pudendal nerve section to become stuck onto and in between ischial spine ligaments. The ligaments act like a vice grip. It’s excruciating pain that prevents sleep, sitting and functioning normally.

The guided blocks are a diagnostic tool. If done correctly you should be pain free and able to sit for a short while. 70% of entrapment is the rear branch.

24% are entrapped in the Alcock’s canal and the vaginal clitoral pain is likely a stretch injury caused during a surgery or fall or sports.

[UnionJxck]

Tbh, I just explain it in a gruesome way to people. I'm at a point where I couldn't give a shit and just tell people straight. I tell them how it feels, i.e It feels like someone has shoved a lighter up my arsehole that's permanently lit, analogy's (Pardon the pun) like that tend to get the point across. I normally just say everything in my pelvic is on fire and I can't sit properly etc..

As for treating, DO NOT get your hopes up on pudendal nerve blocks, I've had one and it did sod all other than make my right arse/leg really numb for a day. I've tried Amitriptiline and gabapentin with no relief (However, gabapentin does get my mood levels up) I've gone to high dosages on each med.

I've tried pelvic stretches that didn't make a difference. I've given up on the NHS as they're next to useless when it comes to Pelvic pain and I'm going down the route of "Exercise is the only way out". My pain has worsened over time, how can it be? - Muscle tightness! I believe my muscles in and around the nerve have tightened over time as my symptoms have worsened. I'm currently doing concentric stretchs/movements for my Abductors, thighs, buttocks, other surrounding anatomy's to hopefully free up tension which will inturn release pressure surrounding the nerve and pelvic in general. I'm only 6 weeks into my course of "DCT" (Google it) and haven't had any relief at all so far, but it can take a long time to change things inside of you, so I'm still going along with it for at least another 4 months!

Good luck with this, there's no easy fix when it comes to PN.

Jack

[Susan1-2]

I would suggest prolotherapy to SI Joint, Ligaments, and trigger point injections via ultrasound. Find a good physiatrist. Check your leg length and see when you are standing if you are tilted. The nerves can get pinched. Do stretches for psoas and strengthen your core. Pull belly button to spine when exercising do not do any Kegels with this problem. My nerve was hit during surgery and then I couldn’t exercise. So, I ended up with two herniated discs because everything weakens . This was pulling on my joints and ligaments and I was also diagnosed with joint hypermobility. Pelvic problems are tricky. I would also suggest hypnotherapy so you can relax the muscles of the pelvis. It is easy to get overly stressed with this problem. It will take time to sort it out. A few times a day lay down next to a wall and put your feet on the wall and let your knees fall out to the side. Do some diaphragmic breathing. This will relax the muscles. I would not suggest a heating pad but better to get a soft ice pack like Colpac on line and put it under your back 10 minutes a few times a day. This will bring inflammation down.