Pudendal nerve entrapment

[mollypopple]

I am 55 years old and after a long journey have finally been diagnosed with pudendal neuralgia although I believe it is pudendal entrapment. I have read so much about it and would like to know if anyone has ever overcome this horrible condition ?

[Pamdella]

Hi you are not alone I am in my 15 th year of trying to live with it . First off go back to the start of the pain . And thing back say 5 years . Did anything happen ie a fall backwards . Or I lost of a loved one that stress you badly . You see mine was stress . And sorry. To say. There little can be done . Saying that there is a blocking injection but it's 50/50 . I saw told I had PNE I got tricked into a operation and cut open to be told oh we must of made a wrong diagnosis . Two years on I fly the France to be told I was the nerve pain could be relieved with physiotherapy . Yes it can help you if you find the correct person .I know that is not the. Best news . But take care of doctors if you insuranced

[wren44]

Hi mollypopple, It's indeed a very long journey, but the good news is the medical and PT fields know SO much more now than they did 20 years ago about pelvic pain and pudendal issues in general. I've been on a seventeen year odyssey that started with a C-section that went south. After many many surgeries, hundreds of doctors and specialists, I've made the most improvement in the last year with an excellent PT (the Pelvic Health and Rehab Center) in the US and an approach that made me conductor rather than passenger. For me the keys have been, adding overall mobility, mainly walking (I started with 10 minutes, now I can go several hours) myofacial and trigger point PT work, coupled with self-administered wand work (essentially pressure point work done on yourself) coupled with stretching and yoga. Depending on how pathologized your panty-line pain and upper/inner and outer thigh pain areas, skin rolling and roller work in general is really effective. It's slow, and yes, painful, but concurrently done, with professional guidance, you can come back from hell. I'm 57 so I understand what a journey it is, but don't give up, just start moving little by little. Sending healing wishes!

[lucyp in reply to wren44]

Hi,

I also have been on a long long journey, tried everything you name it I,ve tried it. Made the most progress in the last two years with some simple streches. I still have the condition but also have a good chunk of my life back, it does,nt dominate any more.

Let me know if you interested . This is such a hugely complex condition it may or maybe not be helpful but it's free and non invasive.

Love lucy

[mollypopple in reply to lucyp]

Hi Lucy

I am interested in any help or advice you can give me . I am due to have a nerve block in a few weeks but have yet to read about any one that has had long term relief. Struggling to hold on to my job and I look after after my grandson ( twice a week since he was a baby he is now 4 ) been married for 33 years and my husband has been very supportive. The pain is at times unbearable especially the burning in my vagina and bottom look forward to hearing from you !!

Mollypopple

[Susan1-2 in reply to mollypopple]

Suggest you take .5mg Valium prior to nerve block. The doctor will ask if you want something to relax prior to procedure.

I am going for the surgery Nov 28th after 3 nerve blocks and Radio Pulse Therapy. I will let you know how it goes . Telsa 3 MRI found scar tissue outside alcocks canal. I was a figure skater in my younger years.

[mollypopple in reply to Susan1-2]

Thank you Susan

Does a nerve block hurt?

Mollypopple

[Susan1-2 in reply to mollypopple]

I will be honest I think it is different for everyone. My friend I met at the pain clinic said it wasn't that bad. I found my first one difficult . I didn't take the medication and I should have. 2.5mg Valium is all you need.Sorry, I think I wrote .5mg on my last reply.

Basically, I took a half of pill they offered. It was enough for me. The most important thing is the Nerve block is a good diagnostic tool to see if they have the right nerve that is causing problems. I have heard some people have one nerve block and they are cured. Some have two or three and are cured.

[AuntieH in reply to Susan1-2]

How did your surgery go?

[mollypopple in reply to AuntieH]

Hello Auntie H

Nerve block gave some relief for a few weeks or so . Happy to say that 3 years on I am 70% pain free and lead a Normal life through pain management and physiotherapy. Forget surgery of any sort it doesn’t work....my journey has turned out to be positive I do hope others read this and take some hope from it, Thankyou so much for asking

[AuntieH in reply to mollypopple]

I'm glad you are 70% pain free. What kind of surgery did you have and what type of physio and pain management do you do? Thank you!

[mollypopple in reply to AuntieH]

Hi

I didn’t have surgery just a nerve block injected in pelvis. I had internal physio once a week for 8 weeks or so to release the muscles. Pain management was remarkable , being with others, understanding how pain is registered in the brain, (organised by my neurologist) it helped mentally and physically I would definitely recommend it. I am now down to 50mg pregablin a day from 600mg I still get pain but it doesn’t hinder my life any more . The treatment through the NHS was fantastic I have my life back. So often we hear sad stories on this site, people who just can’t cope I would love for them to hear my story and realise this horrible illness can be overcome .

Thankyou for your interest

Mollypopple

[AuntieH in reply to mollypopple]

I'm so happy for you! Thank you so much for responding!

[chillijava in reply to mollypopple]

nerve blocks dont normally work for long periods, mainly hours, if you are lucky, but they are a very good diagnostic tool for the doctors, if you have any kind of relief, it indicates that the nerve problem is in the pelvic area, maybe pudendal nerve.

i have had 3, the last one i had in nantes, france with professor roberts team, and i had relief just short of 2 days, so much so that i could actually sit without pain. i am now scheduled for surgery at the end of january 2017.

please have your nerve block, it will at least give you an idea of where your problem is

andrea

[jimgart in reply to chillijava]

What about surgery!

[jimgart in reply to jimgart]

?

[chillijava in reply to jimgart]

i had my pne surgery in may but still havent had a reduction in pain yet

[stuchris in reply to mollypopple]

I was diagnosed with it about 3 years ago and the pudendal block didnt work but a ganglion impar block works great. Relieves rectal pain for me for several months of course coupled with gabapentin and tramadol my pain is almost always there but it is more like tingling and light pinching and very tolerable. After the shot I am pain free for weeks and it comes back very slowly. Everyone is different but if the pudendal block doesnt work ask about the ganglion impar block.

[hoopwhirl2007 in reply to lucyp]

Hi Lucy, I have been suffering for 2.5 years now and am at my wits end! I finally managed to get to see Dr Greenslade in Bristol and paid privately for a consultation and nerve block injection. He told me I had PNE. This was a week and a half ago and unfortunately the pain is no better, in fact, it is now worse. I am close to tears all of the time. I have read so many different online recommendations on the best exercises to do for PN pain relief. I then read something else online and it says to definitely not do these exercises, so I am not doing any apart from walking and have increased my intake of Gabapentin and now taking paracetamol and ibuprofen on a daily basis. I do not sit down at all now. I was made redundant from work in July and am unable to look for work because I am in so much pain and unable to sit at a desk. It would be great if you could tell me which exercises you have been doing to help alleviate the pain. Xx

[lucyp in reply to hoopwhirl2007]

I d stretches which laterally open my hips. I have been where you are emotionally, I think most of us have. The trouble with stretches is because the cause of pain is probably different for different people what may help me may not help you. I have been through all the conventional treatment, nerve blocks, Botox, surgery, acupuncture pelvic physio with Ruth Jones, and this is the only thing that has really helped with debilitating pain. I am still in. Pain but a more managible level and I can do many things that I was previously unable to do.

If you goggle monster walk, this was the one that really helped me but like all new stretches take it very slowly.

Love Lucyp

[hoopwhirl2007 in reply to lucyp]

Thanks Lucy. I have read that people suffering with PN problems should not do Monster Walks, then I hear that these really help you. Can you explain for me, a dummy, what you mean by lateral stretches. I would dearly love to know. Looking forward to hearing from you. Love Carol x

[Pattimoe in reply to lucyp]

I am interested in any help. What kind of exercise do you do please?

[mollypopple in reply to wren44]

Thank you do much for your reply and I am sorry to hear what hell you have been through. You sound a very positive person and I take hope from your journey. l am having pain management and a nerve block in a few weeks time hoping it will bring some relief

Take care

Mollypopple

[Susan1-2 in reply to mollypopple]

I would also suggest swimming except the breast stroke. You don't want to move your legs like a frog. Swimming relaxes your nervous system and is a good cardio workout to relieve stress. I get in a lane and off I go. I use styrofoam weights for resistant training as well.

[AuntieH in reply to wren44]

How are you feeling today?

[AuntieH in reply to wren44]

How are you feeling now? Any more pain?

[Seeious]

I was recently diagnosed (after a 3 year long journey including all sorts of doctors and therapists) with pudendal neuropathy, entrapment. I am scheduled for an. MRN the first week in December followed by a pudendal nerve block. The physician that I finally found is very good. She does not guarantee anything but I could get total relief or partial. She has a patient who gets relief for about 4 months and then gets a block fo another 4. It has been a very long road with tremendous pain. My main symptom is rectal pain and can be severe. I have great sympathy for anyone with this problem.

[pieper in reply to Seeious]

who is your doctor? where are you located?

[Seeious in reply to pieper]

I am located 4 hours east of Dallas. Found a female physiatrist who specializes in pelvic floor.

[hoopwhirl2007 in reply to Seeious]

Hi, I was recently diagnosed with having PNE and was given a nerve block. This was two weeks ago and since then the pain has got worse! I am close to tears now every hour of the day, apart from when I am sleeping, when I feel fine. The specialist who injected the nerve block did tell me that if it didn’t work then I would have to have another nerve block under a CAT scan. I was interested to read your post when you said someone has nerve blocks every 4 months or so and that would suit me fine! I have also read somewhere that someone recommends a pain lotion. I just wish I could find this post but there are so many of us sufferers and so many posts, I just cannot find it! There is so much evidence that there are actually people suffering with PN and PNE, you would think that by now, medics would be trained in this field? My nerve block has just cost me £300 and in addition to this, accommodation for 2 nights, train journey to the hospital and food etc, resulted in this nerve block actually costing £600! So unfair it cannot be done on the NHS and I feel so angry I have to pay for treatment when I have paid into the system for 46 years!!

[lucyp]

Hi Molly,

I have just opted a reply to Shrelee, so I hope this May help.

Love Lucy

[mollypopple in reply to lucyp]

Hi Lucy

I can't find your reply could you send it to me please

Thank you love Molly

[lucyp in reply to mollypopple]

Hi Molly,

Don,t know what happened there.

I have tried professional pelvic physio for two and a half years at great expense with very little improvement. I do respect that some people do get significant benefit so I,m not dismissing it, it just did nor help me. I,ve also spent many many thousands of pound on other treatments with no improvement.

What has really changed my life is David Mc Coids monster walk you should be able to goggle monster walk.the other stretch I found on a pudendal yoga site. I will try to explain if you don,t understand I will try to send you the link.

Basically you lie on your side propped up by your elbow then bring you top leg over and bend you knee until your foot is flat on the floor, hold stretch for a couple of seconds then roll over and do the other side.

With any new exercise I always start with just a couple and if it does,nt aggregate build it up slowly. These two stretches I have found to stretch out the pelvic floor for me especially the obdurately which was agony for so many years.

I do hope this will be helpful.

Let me know if you would like any more detail and I will do my best to help. Anybody who has to endure this ghastly condition needs all the help they can get.

Love Lucy

[mollypopple in reply to lucyp]

Hello Lucy

How are you doing ? I have been in touch with David McCoid and he is skyping me this week to show me some exercises. are you able to tell me how much his services are I am not sure how it works.

I hope 2017 is going to be a better year for us all!!

Take care love mollypopple X

[lucyp in reply to mollypopple]

Hi Molly,

I was seeing David two years ago, so I don,t know if the charges are the same. I seem to remember the first session was free, then it was £50.00per visit. As he was fairly local to me I saw him in person so I don,t know how much skype sessions are. Do be wary though as I have recently read somebody having a bad reaction to some exercises around restorative exercise. I am always very cautious around new stretches, what is good for one person might not suit the next. I honestly don,t know the significance of your recent nerve block. I had many blocks over the time none of them worked if anything they aggregated the area, if I had my time again I would only have a couple for diagnostic purposes.

Let me know how you get on with David.

Love lucy

[mollypopple]

Hi Lucy

Mollypopple here

Firstly, how are you doing?

Thank you for the info on the exercises much appreciated. I have been in touch with David McCoid and he is skyping me in the new year.

II have just had my first nerve block in the coccyx area sadly no change, my question is as I haven't had any relief from it does this mean it's not 'pudendal neuralgia ' ( I have read a nerve block is a diagnostic tool).

As you say this is a ghastly condition I have grown with the pain.....I now Cali it 'my friend' .....have to accept as I feel it's never going to go away

i

[stuchris in reply to mollypopple]

Ask about ganlion impar block fixes my rectal pain.

[stuchris in reply to mollypopple]

What block did they do? The pudendal block is not in the coccyx, The ganglion impar shot is done through the coccyx and onto a nerve bundle on the back side of the coccyx.

[mollypopple in reply to stuchris]

I had a ganglion impar block through the coccyx ...as you say it should of been a pudendal block, not sure where I go from here as pain doctor is now not seeing me for 3 months ....any ideas are welcome thank you

[stuchris in reply to mollypopple]

No medical reason you have to wait 3 months for pudendal block. Make a fuss get them to do it and get meds to help you through.

i suffered for 6 weeks once waiting for dr i regret that. i should have been very assertive they dont always get how bad the pain is.

i am in USA so i dont understand system in uk but i think if you fuss big time you might not have to wait.

[Hidden]

They need to block the Pudendal nerve only. If that relieves all of your pain, even if only a short time, then that is diagnostic for pudendal neuralgia. There are so many nerves in the pelvis, not sure which nerves would be blocked from the coccyx area. Such a complicated part of the body!

[mollypopple in reply to Hidden]

thank you for your reply .

Do you know of any NHS pudendal doctors in the uk ?

[Hidden]

I know of two. Dr Greenslade in Bristol and Dr Baranowski in London. I had my first block done at my local hospital by a pain consultant.

[mollypopple in reply to Hidden]

Thank you

One last question did your nerve block work and was it administered at the ischial spine?

[Hidden]

Yes, I've had two. They both numbed the pain for a few hours. I had steroids with the first one done locally. The steroid is supposed to be therapeutic, but it did flare up my pain. I also had a CT guided one last September done by a radiologist in Bristol (referred by Dr Greenslade). That was without steroids injected at ischial spine. I was pain free til the next day. It has made no long term difference to the pain, it is just a diagnostic tool. My nerve is entrapped in scar tissue caused by prolapse repair, I'm going to have decompression surgery to release it.

[AuntieH in reply to Hidden]

Did you have decompression surgery? Was it successful?

[mollypopple]

This really is the last question I hope you don't mind

How was your nerve entrapment diagnosed? Was it seen on an MRI, did it show up on the electric nerve tests? I have all the symptoms of entrapment but all tests appear negative

[Hidden in reply to mollypopple]

There are no tests that can diagnose entrapment. Nerves don't show on MRI scans. Mine is assumed to be trapped because it came on immediately following surgery. The only way to know for sure is to open you up and look. So it's symptoms and history based, the tests rule out other causes.

[mollypopple]

Thank you for all your help I wish you well with your decompression surgery x