Hi, I have been suffering with pudendal nerve entrapment since June 2015 and to date am still in pain. I take Gabapentin and amiltriptyline for the pain but to be perfectly honest, they are not that effective. I have had every single test done under the sun including xrays, ultrasounds, Scans, MRIs and an examination under general anaesthetic on my coccyx. The medics were convinced that it was my coccyx giving me pain so at least nearly 2 years had been wasted on examining the wrong part of the body. Coccyx problem was ruled out once I have the general an. I then had a colonoscopy which found nothing. I have been back and forth to different physiotherapists and most people have admitted that they know little or nothing about PNE. In 2-17 I went to see Dr Gareth Greenslade in Bristol who is an expert and he told me that I did have PNE. I am not sure whether I have this problem or not. He gave me a nerve block which froze area from right buttock where he injected down to my right foot but by the next morning, pain returned. All I do know is that every day I have a problem sitting down and there are times when I really panic if I know I will have to sit down for longer than 10 minutes. Over the last year I have had periods of time when the pain is just minimal and am able to sit on my special cushion for half an hour to eat my dinner but this lasts for about one month then the dreadful pain comes back again and hurts so much I am unable to sit down for a meal and have to stand up whilst eating. This awful pain seems to last about 2 weeks then quietens down again. I am typing this chat kneeling down with ipad on the bed which now is causing me problems on my knees. When the pain is really bad, the only way I can describe my pain is burning, shooting pains up my back passage and it feels as if I have dried hay stuffed up there, digging in and scratching. For over four years I have been unable to go out where it involves sitting and my life is actually quite depressing. Friends do not ask me out now because they know I will say I cannot go because of not being able to sit down. I have been taking CBD oil, a really good quality oil costing me 70 pounds per month but I feel now that my body is getting used to it and not working as well. I have got exercises given to me by physios and I did go back to trying some a couple of days ago and this is when the pain started again. Does anyone have any advice on how to relieve the pain?
Pudendal Nerve Entrapment: Hi, I have... - Pelvic Pain Suppo...
Pudendal Nerve Entrapment
O have found cyclobenzaprine muscle relaxer a big help and I work a few days a week and they don't make me tired..they just relax everything down there in rectal area and also got some Valium lidocaine suppositories that help...I also found some people who follow David mcoids program of DCT resistance training who swear it helps..I also have been doing pelvic floor pt for 6 months and it's been very helpful...some people say Botox helps too ..check out Jane Hutchinson dct on you tube..just type that in...I feel the more info you can get the better...message me any time so we can support each other...fyi I also started a local pain/illness support group in my neighborhood
Thank you so much for all of your useful info. I agree, the more we all share our experiences, good or bad, then we may find a way out of his awful pain. Yes, i will contact you if I have any questions. Merry Christmas to you xx
I'm really sorry that you're suffering so much pain. I also had excruciating pain in this area for 7 years and had all the tests. I also thought it was PN. Eventually I saw Dr Ruth Jones, a pelvic pain physiotherapist at Eastleigh, near Southampton who said that in her opinion I didn't have PN. She was a huge help and I am now miraculously pain free. It also could have been a natural healing process? All I'm saying is don't give up hope. It might be worth you finding a specialist pelvic pain physiotherapist?
How wonderful that you are now pain free! I am starting to think the same way as you and hoping that the natural healing process will run its course. Did you do any particular exercises? I had some exercises given to me by a women’s health physio and it caused me even more pain. In addition to my meds, I am taking CBD oil which does help a lot with the pain but at £70 per month, I can only ration myself to so many drops per day! Carol xx
Hi! I did do exercises for many months which Dr Ruth advised, but I am unable to tell you which ones as they could be detrimental to you as your diagnosis would be different. I do hope you find relief soon. xx
What did dr. Ruth Jones do to help you since you are now pain-free I'm curious as to what you have done to achieve this
Having her therapy for an hour each week and sticking rigidly to her exercises helped, but as I said, in my case, it could have been a natural healing process anyway?
I know you said you didn't want to say what exercises but I am still interested to know which exercises she gave you to see if they're the same ones I'm doing .. I lie down and cross my legs over and pull to feel a buttock stretch. Also I do the happy baby pose from yoga and the pelvic tilt.... If you have any others that you think would help please tell us,thanks
I couldn't agree more with Blott! Often the causes of pain don't show up on CTs etc. The physiotherapist she mentions can be seen on youtube, as far as I remember. Several people on this site have recommended her. I think it is important to realise that it takes time to heal so that persevering is vital and for this one needs to form a trusting relationship with whoever is doing the treatment. A further aspect is the need to relax - difficult with severe pain- but there are various methods which can be helpful. I know from experience! From what I have been told, it seems that the drugs you have been taking lose their effectiveness after a certain time so all the more reason to find other ways of reducing pain. The problem with sitting can indeed lead to giving up a social life, which of course in its turn has serious repercussions. Why not find places to go where you can get up and walk around or just stand for a while? That's what I do. Or alternatively ask friends in to your place. I have also bought an armchair with a footrest, like a recliner. With my feet up I can sit comfortably and I have back support, which I didn't have when I lie on the sofa. And a last thought, Alaine1, the administrator has written several posts recently, which I thought were very helpful. Maybe it's worthwhile looking at them.
Thank you for your reply and I have absorbed what you have told me. I will check out the people you have mentioned. I have a recliner chair with a foot stool but unfortunately this makes the pain just as bad. I haven’t sat or lay down on he couch for over four years now and I tend to lie on the bed and watch tv. I am fortunate where my part time job involves standing at a high reception desk so I don’t have to worry about sitting down. I walk a lot too and that is when I am out of pain. CBD oil helps me a lot but is very expensive so I have to limit myself to how many drops per day I can take!!
Hi I too have PNE and use pregablin which was far better than the gabapentin. I am still on the list for physio and for a confirmed diagnosis
. I have recently tried acupuncture which has been so good 😊 I’ve managed to reduce my tablets my 1 so I now take 3 a day not 4 . It is so difficult to describe the pain I agree . She concentrates on the area in my back where the nerve runs
Hope it helps mine has been since 2017 I’m so hoping it does go with time . Have you heard it does ?
Pippa
Hi Pippa
I will discuss the drug you are taking with my doctor and see if that works better than Gabapentin. I am and have been taking Gabapentin for over four years now and take 1800mg per day. Wow, I have put on so much weight since taking it. Very slowly, without noticing, I have put on nearly 3 stones in weight. The last 5 days or so I have been in a lot of pain resulting in not being able to sit on my special cushion to eat my meals. I am now kneeling at my bedside using the bed as the table!! I also take the usual Paracetomol and ibuprofen for pain relief but I am sure taking these pain killers for years is not doing my insides any good? Docs admit to not knowing anything about PNE and the last one was treating me for hemmoroids for Gods sake!! I have already tried acupuncture but alas this did not help me. Thank goodness for this forum where we can share our experiences and get advice from people who really do understand us! I got my diagnosis from Dr Gareth Greenslade who is based in Bristol and it cost £300. Good luck in getting pain relief. Xxx
I also take pregabalim. I am taking 75mg twice a day and am not getting much relief from the pain. What doseage do you take? Thanks
No wonder you don't get much relief from such a low dosis of Pregabalin! I am on 100mg three times a day. The maximum authorized dose is 600mg/day, depending on your weight, I think. I also take Tramadol LP 50mg 3x/day. A year ago I had decompression surgery performed by Dr Bautrant in Aix-en-Provence. Only partially worked for me.
Thanks for your reply. Yes I think perhaps I should be on a higher dose, I'm going to phone my doc tomorrow to see what she suggests. My pain has been really bad lately and it wakes me during the night. I thought about surgery but don't think I could travel to France and don't think there is anywhere in the UK that does it. I'm waiting to have nerve blocks but from what I've read they don't appear to help much. Am hoping a higher dose of pregabalim might help a bit. Take care!
Traveling anywhere is indeed very difficult for us pelvic floor sufferers ! I am lucky to live in France, not very far from the town where Dr Bautrant has his surgery. He has therefore been my consultant from very nearly the beginning. The surgery has made the area near my vagina completely pain-free but my rectum is still extremely painful and I can barely sit. I also suffer from coccygodynia for which I have regular ganglion impar blocks.
A higher dose of Pregabalin may well help you with the pain, but watch out for possible extra side effects. I had 3 nerve blocks before I opted for the surgery. The first two helped keep the pain in check for several months each but the third one aggravated it.
I wish you the best of luck. Don't forget to keep us all posted. Take care!
Hi Minnie_Mouse, do the ganglion impar blocks help with the rectum pain? I have that too.
Hi AuntieH
The injections helped with the coccyx, but they had not effect on the rectal pain. I found out by chance that suppositories give me some relief from rectal pain. Amazingly, almost any suppository will do. I have concluded that it may well be a form of distraction therapy for my long-suffering rectum...
Thank you! I cannot wrap my head around how people are able to overcome this condition with mind/body control.
Neither do I, really. Yet I did try : mindfulness, yoga, sophrology, hypnotherapy, plantar reflexology, and even cutaneous stimulation, all done in a very serious and convincing hospital environment which made me believe it could work. But it didn't. Sometimes, my pain would even increase, especially when I had to sit or lie on my back for too long. Most of the time, it just bored me. No placebo effect either. Nothing.
Wonder what an osteopath would do?
Oh, sorry, I forgot that one ! My coccyx was actually OK until an osteopath decided that it was slightly lopsided. The pain started shortly after. I still see an osteopath twice a year (not the same one of course) because of sacroiliac joint instability. He tried to fix my coccyx (internally this time) but to no avail. Some osteopath claim to have good results with pudendal neuralgia and some on this forum have found them helpful. Osteopath should normally be able to help with coccydynia too. You just have to find the right one.
Thank you, you just never know if they're going to help or make matters worse!
I take two tablets of 75mg in the morning and two again in the evening. X
I have also noticed that if we m not constipated the pain is less x
Can totally sympathize with what you have to endure. I have severe adhesions on bowel ,bladder abdomen and pelvic area. I have a severe bowel condition and a rectocele prolapse causing debilitating pain. Pain is so bad at rectum that like yourself cannot sit for long periods however I do use a doughnut cushion which helps and goes everywhere I go!!!
What helps my pain (for short periods) is my specialist physio who does internal vaginal trigger point therapy in conjunction with attending my bowel and bladder consultants who inject botox into pubirectalis muscle and injections into bladder. For me it does not eradicate pain but gives me a short respite for a few weeks.
Medication I use is slow release tramadol one in morning and one at night, amitriptyline as a pain block 2 in morning 3at night. Also take antispasmodics throughout day.
Due to health complications this is all the treatment that I take, it helps some but I have fantastic doctors who have helped me to accept that this is life long conditions and we work hard to manage and benefit from treatments.I wish you good health and hope you can find a treatment that is right for you. Stay strong!!!!
Hi Skye, I know it's been ages since you wrote this but I was wondering if you'd be able to share with me who the Dr was/is that did the botox into the pubirectalis muscle? I'm hoping you're in the UK. Hope you're better now.
Dr gurrerra at the New Queen Elizabeth Hospital Glasgow.Unfortunately for me my treatment stopped 2019 due to covid. Have had five cancellations and doctors are wading through a massive backlog.
My pain has escalated and not coping too well.
Hope they get to me soon!!!
Botox Treatment was very effective for me in conjunction with specialist physio. Hope you keeping well and get to see Consultant.
Oh hi again Skye! I remember you!
I'm sorry to read that you're struggling again. Yes, COVID has affected quite a number of services. I hope they ramp things back up again so you're seen quickly. Have you tried anything else while you're waiting? I'm certain you've tried so much already!
Sadly this isn't available in England through the NHS, as far as I'm aware. Not this type/location of botox injection.
I've tried to find this Dr Gurrerra, even though we're miles and miles apart but I can't find him or any details about him. Sorry to trouble you but do you by chance have a link? Or pehaps his name is spelt differently? I'd be willing to travel and if he has a private clinic, bonus!
Take care! I'm in a holding pattern atm.
Consultants name is Karen gurrerra, try looking at New Victoria hospital I know she has clinics there, also a doctor called tyagi can't remember her first name.Hope this helps and you get an appointment. 😁
Hi Skye, thanks so much for this! The plot thickens! haha. I contacted the hospital and they said there's no one by that name there. They've forwarded me on to the physio team to discuss treatment options though. So, now I'm totally stumped! Oh well. I look into Tyagi too. Who knows, right? Thanks again, really appreciate it. 
PS I've found both! Why google works sometimes but not other times, I'll never know! also, how the hospital didn't know that she was working there is just weird. Oh well, no matter, sorted now! Thanks again. 
God love you! I was there 10 years ago. Almost exact symptoms and attempts at resolving it. The best thing I found was a urogynocologist who gives me injections through vagina into PN area. Cortisone/lidocaine cocktail. About 2x year. I can actually sit for a while on my cushion with coccyx cut-out. Mainly I lounge sideways, never upright. No pills worked for me. Keep trying to find someone who understands, like a women’s physical therapist. Good luck 💗
Thank you so much. I have been to several PTs but I am convinced none really know much, if not anything about PNE
In all honesty, I think you should not rely on medication, nerve blocks etc.., go down the route of manually changing your pelvic area with vigorous exercise that target key muscles in and around the pelvic. Concentric stretching can help a great ton, I'm in a FB forum where we're all doing the same exercises and people are seeing great results. Men and women, some of which were in the same boat as you not being able to sit down which great impacts anyone's life.
I myself haven't seen any results so far, but I really think you should go down this route of manually change your muscles, this could take pressure of the nerve and ease your symptoms, or even completely cure you of this disgusting, horrid, debilitating pain.
If you want to know more about the course I'm doing, feel free to reply
Good luck!
Jack
Hi Jack, is concentric, resistance training? If it is I have tried this and have been almost crippled with pain afterwards so this is something I wouldn’t try again. Thank you so much though for responding and attempting to help me. Have a lovely Christmas xx
It is, but it's probably one of the only way's to get out of the state you're in. How long did you do it for?
Every other day for a week then I could hardly walk
Hi Jack I saw your reply to someone else in the forum about your Facebook group who do stretching for pelvic pain and I am interested to know more about it please,thanks
Hey! It's not stretching is concentrics and eccentrics. To learn more about it google DCT for pelvic pain to find the website.
I’m so sorry you have to deal with this awful issue. This seems to be a problem that ebbs then flares, who knows why. It sounds like you’ve tried many things to help including medications. Have you tried keeping a food journal to see if your pain is worse in the days following specific foods? Some foods trigger inflammation in some people and can cause more pain. Dairy is one. Foods that are high in oxalates are another. You can read about oxalates and pain online. Note that it’s important, if you cut down on your daily intake of oxalates, that you do it very gradually. Otherwise there is a “dumping” side effect that causes problems. For me, high oxalate foods (like nuts, beans and spinach), and even oats, cause me more pain, so I avoid them.
It’s just a thought, but you could investigate your diet as another clue in your pain.
Best wishes,
Andi
Hi Andi, what a great idea .. That's one thing I hadn't thought of doing. I will buy a big diary tomorrow and not only enter things I've done on a particular day but food I've eaten. I can also put a mark from 1to1 0 for my level of pain each day. Thanks Andi, I'll give it a try (I'm quite excited actually) . When I think of all the medics I've seen, not one had mentioned my food intake.
You need decompression surgery. See if you can get it and the sooner the better. NOTHING will help a pinched nerve.... it needs releasing. Good luck.
The surgery saved my life.
Hi, I am so glad your surgery has worked but you are one of the few as I have heard a lot of people wished they hadn’t had it done and their surgery was carried out in Nantes, France by the top specialist. Plus the cost of having this done is so high and too risky to take the gamble. Time off work involved etc etc, I just couldn’t take the risk. What is unfortunate where i live, no one has a clue what PNE is?? The last doctor I went to see was wanting to treat me for piles ffs!! She sent me to yet another pain management clinic and after waiting months for my appointment, when I finally got there, the doctor had entered every single note of mine incorrectly; saying I had been suffering with the pain for 4 months and not 4 years and all of my other symptoms incorrectly entered including I was suffering with lower back pain! I was not suffering and have not suffered with lower back pain?? Good job I wasn’t due to go in for a major op! Anyway, following that appointment, there was nothing the clinic could do for me. I still cannot believe they told me that.
Hi Hoop! I know this is an old thread but I was wondering where you'd read that a lot of people haven't done so well with the decompression surgery?
How are you these days? Any better? Hope so.
I have heard decompression surgery has helped some people and not others so I think it's still a guessing game ....glad it helped you though
Who did you have surgery with? Would you be available for private message?
I had my right inferior rectal nerve released in 2011 by Dr. Stanley Antolak. It helped me tremendously.
Hi hopewhirl i have PNE also ( 2014 ) i can t sit properly I learned sit on my knees on a low yoga bench with a swimmingplancket on it where i carved a hole in. I got mayor relieve because i quite sitting. I even go in public with it go to school meetings and in restaurants. I sit for 75 % on my knees with it and the presure on my tailbone / pudendusberve is much lesser.
I got ptns trearment for my overactive bladder and when i used it ones a week i got sudenly pain relieve for 25 % you can google on ptns and pelvic pain and you can find a trail were 60 % people got relieve.
I din t know if it works for you but its important to share knowlege and expieriences. My painscale is now 2 till max 6 it was 3 till 9. But painscales are subjective and personal only a way to express the difference.
Greetings from Holland Willemien
Why do you think the ptns treatment work because it relaxes your bladder so then it relaxed the whole pelvic floor probably right?
Its not a kind of relaxing the bladder ( muscles ) but more stimulate / reset the bladder nerve . And yes i think it also influances the pudendus nerve.
I am sorry to hear you have had to deal with this.
I also have pudendal nerve pain (along with muscle spasms).
I take Desipramine, and when I need it, I also take Flexeril (Cyclobenzaprine). However, one thing that has been a tremendous help for the nerve pain-- and this may sound weird-- is Psyllium Husk. My nurse practitioner has a strong interest in pelvic pain, and she suggested that I add Psyllium Husk to a drink each day. I add 1/4-1/2 tsp to my orange juice each morning.
It was basically like a miracle. Very seriously, it has made a huge difference in pain level.
It may also work for you. (?)
LB
What do the psyllium husks do. Do they help with pain I thought they were for constipation. Do you get them from a chemist. Thanks!
Yes-- Psyllium Husk can be used for constipation. I buy it in powdered form from Whole Foods. Whisk into a drink each day.
No idea why it helps me with nerve pain (pudendal) but my nurse practitioner suggested it. She told me that she had seen it help other patients with similar issues as mine.
I tried it (not expecting anything) and it has helped drastically reduce my nerve pain.
I was having pain every day following bowel movements.
LB
I am going to Whole Foods today and purchase this. I have been suffering for five years with P N
Its true when i have less pressure in my pelvic then the pain is also lesser so you have to get your bowel movement going
Sorry to hear about ongoing Pudendal Nerve Damage. Mine happened whilst having a routine hysterectomy I have been through together with my long suffering family. For four years I wanted to die, I had tried every medication there was to offer, until I met a new Meds Doctor who prescribed Pregabolin 100mg morning and bedtime.....I am unrecognisable now I am a different person yes I still have sore days, my triggers are lifting pushing etc but please give this medication a go. I now want to live in my beautiful house with my beautiful family. I’m glad I didn’t carry on with my suicide plan! I was at my lowest point now I’m not! Hope this helps x
So sorry you had to go true such bad years. compassion . I had PN seizures for two years i also was desparate. I am proud you kept the faith or bond with your loved ones and now you got some relieve
I also have PN and sitting problems i only can sit on my knees on a yoga bench were i layed a swimming board on where i carved a hole in . Al the cushions don t work for me i tryed them all. I sit on my knees on bench also in restaurants first i was very ashamed but now i am used to it. It is also healthy for my core body to sit up straight instead of laying all day. I just got relieve of pain for a hole mounth now. I have PTSN treatment each week for overactive bladder and this gave me after a few weks 25 % of pain relieve in tailbone pirineum and pelvic. You can google : ptns pelvic pain and you can find a trail with 60 % of people with relieve because of PTNS . Its a small intervention if you got the oppertunity i shall try it.
Hi willemine; which country do you live in please? I searched for this treatment in the UK but couldn’t find it. I am pleased that you are finding it helpful though; it sounds very interesting.
Best wishes,
Suzy
Hi Suzy I am from Holland. I know here in holland it is legal to use it at home ( you can buy the aquitment for 300 euro ) but you have to have guidince to learn how to insert the needle ( its diffecult to find the nerve ) otherwise there is no chance it can be helping. I got a insert certificate and i can do the treatment myself at home with aquitment from the hospital . I am in a pilot organised by hospital this pilot stops over 3 mounths . I don t know if i am allowed to used it for a longer time at home otherwise i have to visit the hospital every week or i buy the aquitment my self.
I get the treatment prescipted by a urologist because the treatment is often given for overactive bladder. Maybe you have to call urologist in hospitals to ask for this treatment.Success by finding someone how can provide you the treatment.
Urologist said i could buy the aquitment but now i surch for it i cant find the one with the needles only the ones with the stickers.
Thank you for sharing this information willemine. I actually have an internal sacral neuromodulator which I believe is meant to do something similar to control the bladder and pudendal neuralgia. However it is quite a bulky implant in my buttock and my sacrum. It is very uncomfortable at the moment, so I am looking to see if there would be an alternative treatment if I had it removed.
I hope that you are able to find the needles and equipment that you require to continue with your treatment.
Sending you best wishes for success.
Suzy xx
Thanks fellow pain carrier (:
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