I have written many times about 8 years of PN and have done everything. Want to know if anyone gets completely numb in rectal and vaginal area? You would think that would be relief--but not. Its just a pervasive pressure! Its going into legs & feet but I have neuropathy too. I am afraid of losing mobility! My bowel is involved do to rectal nerves from pn. Thanks!
trishj46
Hi. I also have PN. I receive nerve blocks via ct scan every 3-6 months. I find them to be really helpful. Is that something you have had?
Yes, I have had many nerve blocks with minimal relief---I gave up on them.
I am pretty much home bound now, so its hard to get to any place now.
But I think I have been everywhere any way through the years. Eight years has done me in with spinal cord surgery too that left me more debilitated on top of PN.
Take care! trishj46
I’m so sorry. Mine was caused by endo of the sciatica I also had excision surgery which made a difference. We’re your nerve blocks done using the ct imaging machine? I’ve had then with and w/o. The ones with the scan are far more affective.
Yes I have had nerve blocks both ways---some relief, that's all,
Glad you are getting some relief! Hugs!
trishj46
How are they helpful? What changes?
I’ve had nerve blocks done with guidance two months in a row and they are not helping. How will I know if they help? Thank you.
Hi I too have PN but like you numbness rectal and vaginal area...my legs are the same and my bowel movements have been effected my gp insisted I went to a&e and they did mri scan asap it shown my L4/L5 pressing on S1 nerve
Hi, I speak for my wife who has had pne for eight years, I have written in the past but we all seem to impart little help only sympathy. I have had to educate my GP and the twenty or so consultants about this problem where little is known and little done in the way of research. We do not represent enough cases and I am sure there is an underlying attitude that "well,it is only pain!"
I have tended my wife for eight years trying to find an answer and watched her slowly worsen and give up. She now spends all her time in bed which causes other problems with constipation and bloating. Now she has been diagnosed with Parkinson's and finds eating and drinking difficult, everything has to be semi-liquid. On Friday we are off a see yet another Gastroenerologist for the swallowing and breathing, yesterday we went to the GP for a medical review but riding in a car brings on acute pain in the rectum and last night at two am she was vomiting with the pain and took an overdose of the Clonazopam muscle relaxant. The GP says she is lucky to be alive. I do what I can for her in fact the only thing she does is go to the toilet on her own, I put her into bed, tend to all her needs and now even have to alter her position in bed. She just wants to go to sleep for ever to avoid the pain. The room is now left dark all day and the television is not on so she can sleep.
I continue to try to find a solution to this problem that has destroyed our lives as we cannot go out save for my weekly trip to the supermarket and now I will not be able to without leaving someone here to look after her. The GP 's only comment is to remove access to all medication to prevent a further overdose!
Where do you live? Has your wife been officially diagnosed?
It sounds like her rear branch is being pinched. That happened to me and I was just like your wife, living in bed, until I had the decompression surgery. No medicines, physiotherapy, or other alternative therapy will release a nerve that is stuck to fascia, ligaments and other connective tissue. Surgery is the only answer. I fear your wife must be desperate for a return to normalcy. I can recommend doctors who might be able to help.
Hi ,thanks for your reply to my note. We live in Kent. The pain is acute like an acid being poured into the bowel and sitting on a ball. It is a daily occurance. Clonazopam is a muscle relaxant/ anxiety pill that is habit forming to the extent that you need more and more to get back to where you first started. She also takes a cocktail of other pills for depression which means she is asleep most of the time.
I must have spent in excess of £20K and got nowhere as very few know of this problem or even put it down to a mental problem, well who would not have a mental problem after eight years of pain with no solution. I have looked at Nantes and the new kid on the block in America using Cryoabalation, freezing the nerve but would it work and travelling is an issue.
I am not sure what caused this, but constipation has plagued her all her life with an extended bowel, tortuous is the word used. I could have been as a result of a hysterectomy ten years earlier but it all took off after straining to go to the loo in France, the pain came on rapidly and the local hospital found Fecaloma in her bowel, like marbles, five of them removed digitally .
I would welcome any advice on practitioners specialising in this area. The bowel guru is Prof. Anton Emmanual and the pain clinic man is Baronoskl. We have had all the scans you can have and cameras up and down with nothing to show for it.
Thanks for your interest.
I had my decompression surgery done by Dr. Stanley Antolak in St. Paul, Minnesota in 2011.
He retired and came back to help others with this painful and disabling nerve compression injury.
He is back working part time as he can diagnose this and do guided nerve blocks.
He told me the best in Europe are Dr. Jacques Beco in Belgium AND Dr. Bruno Roche in Geneva, Switzerland.
There is a specialist in England....Dr. Gareth Greenslade.
Thank you for your interest and information.
Dr.greenslade I have heard of, I believe he is in Bristol, I will make contact and see what he has to say.
Thanks again.
Is he still practicing even part time?
Yes
Abbott DRG stimulator did you do a trial? If not, google for pelvic pain.
I have a lot of conditions affecting my bowel bladder pelvis and abdomen. I have had a recent diagnosis of levator-ani syndrome which causes severe pressure pain and numbness in rectall and vaginal areas, with pain spreading down my thighs. At present I am trying vaginal botox which is supposed to relax the levator muscle and stop it going into painful and debilitating spasms. It's only been 3wks but I have noticed a slight relief of pressure in the vaginal area. Consultants Will monitor my condition with a possibility of rectal botox if the pain and pressure continue. I remain positive and hopeful, a slight benefit is better than none!
Hi everyone. I want to share with you that I have had prolotherapy. Strengthening. The ligaments and SI Joint at Newton Wellsley Spine Center in Newton Ma. USA After one of the treatments I was relieved of pudendal pain on my right side and practicing meditation every day twice a day an hour at a time relaxed my nervous system. I was diagnosed with Joint Hypermobility. I also had dry needling and nerve flossing through Oceanside Physiotherapy in Stratham New Hampshire . However my L4/L5 herniated after bulging for a couple of years. So, I am nerve flossing after a microdiscectomy and strengthening my core. I walk 2 miles a day. I am setting a goal for myself to run a 5 k next October. It will take 6 months to strengthen my core again. If you can walk even slowly(long strides irritate nerves), meditate daily using breathing exercise 4,4,6, which will relax the muscles around the nerves, eat very healthy and drink lots of water to hydrate the discs, stay positive, find a therapist to work on nerve flossing and dry needling, use a roller ( I ordered one on amazon The Stick, muscle massage body stick) roll gently over muscles, find stability props si Joint belt and exercise ball(35-45cm) to put under your tummy when doing dead bug exercise . Start with raising one arm or one leg. When you are weak you need stability. Pull your belly button to spine while walking and keep breathing. When you do this it takes the pressure off the nerves. Your strengthening the core. I was very embarrassed working with therapists because as you know the pudendal nerve just loves to mess with the bladder and bowel. But I sucked it up and went anyway. I thought for sure I would have an accident. This so messes with your head. You are not crazy all of this is real and there are ways to improve your situation. Calming the nervous system down first with meditation. You can not get better dealing with fear every day. Fear is the killer. It tightens the muscles. Anger does the same. Yes, I felt helpless but I kept pushing through. I used to find a walking route near the woods in case I needed the bathroom. Clear out of your mind the fact no one believes your pain. You believe it and that is all that matters. Keep looking around for the right people to help you. There is inconsistency in the medical world. I had 4 chiropractors. The last was the best. He just used acupressure to relieve muscle spasms and didn’t yank my body all around. My best friend is the picker grabber I used for a long time to pick things off the floor or out of the laundry. Now , I am bending and using my core more and more. I highly suggest going to Cognitive Therapy. You may be holding on to something which hinders recovery. I learned quite a bit about myself from a few sessions. I have been to numerous physical therapists, physiotherapists, chiropractors, urogynecologists, orthopedic surgeons, a neurosurgeon, nerve specialist, physiotherapist, pain specialist, acupuncturists, cognitive therapist, gastroenterologist, colorectal doctor’s, and this week a rheumatologist. I am not giving up after 4 years and it has been hell and back. Keep pushing forward. I understand after nerve flossing this week moving slowly while exercising is key to not ticking off the nerves. If you tick the nerves off try laying down for a half hour and then get up and walk bringing blood and oxygen to the muscles, nerves and discs. I have learned a great deal from every medical professional to help me in some way.
But I have to put it all together. I choose ice, Tylenol and Motrin right now. I don’t expect to be pain free all the time. I expect the pain to continue to decrease. If I need help for pain I will get help. I hope some of my experience will help someone. I have also learned from stories on this site.
Hello Susan.
Can you private message me? I just have few questions please. Thank you. Debbie. I’ve been suffering for 18 years now.
I love how determined you are and positive..How are you now Susan x
Good morning. I am doing well. It has been a 10 year struggle. I am working on the last piece of my puzzle. The spastic obturator muscle. My pudendal nerve pain is minimal. I no longer have sciatica or SI Joint pain. I definitely don’t need a doctor to tell me how it all started. I am 100./. sure it started around the lumbar discs pinching my nerves. Then my right side weakening. It’s funny I think I said to one doctor “ it feels like the house fell down on one side”. I have a daily routine of 30 min pilates and 30 min dance/cardio/HIT/or weight training. I do not use any medication ( but not opposed to using it if needed). When my obturator muscle acts up I externally rotate my hip for relief and then put my right foot on a yoga block and squat/sink into right glute for 5 breaths. It is taking time to strengthen this muscle. I have worked on self talk. If I start to get fearful I stop and say to myself I can heal. I will not live with fear anymore and I jumped off the train searching for the doctor to fix me. The doctor’s all have their specialties and I am appreciative but only I can figure out the puzzle. I am living it. Instagram and utube are my best friend’s. There are a lot of answers through physiotherapists, physical therapists, and strength training sessions. I already spent a fortune the first 6 years trying to get help. Now, I am watching and learning. I wish all of you the best. Be your own advocate!
Well done you I've just started my journey I've hit rock bottom couple times I don't take any nerve meds I've lost all my muscle strength so take one day at a time building my strength back up who do you follow on YouTube & Instagram Susan if you don't mind me asking x
Levator ani syndrome and pudental spontaneous neuritis
HELP RE POSSIBLE PUDENDAL NEURALGIA
