Hi, My pain started back in June 2015. Real pain when sitting down and it got so bad that no specialist cushion helped. The medics initially thought it was coccydenia and put me on Gabapentin x 1800mg daily. Pain was still awful. Felt like a sharp blade sticking up my back passage together with a burning sensation. i found that when walking I was totally out of pain. Eventually, after continuous coaxing, my GP sent me to hospital where I had MRI scans etc which eventually led to my being put to sleep under general anaesthetic and having a full examination carried out on the coccyx. I was told that my coccyx was normal and healthy. Since then I have had to carry out my own research as a General Practitioner doesn't know everything, and I then requested an X-ray/MRI on my SI joint. This came back as normal. Since then I have been sent to Womens Health Physio and was told that it was classed as Chronic Pain Syndrome!! I was given a few exercises to do and sent home. I was then sent to have a colonoscopy to see if anything untoward was happening inside my bowel and colon. Ap0art from there being evidence of Rectocele (Diverticulitis - only mild), everything else came back fine. Every time I see a medic I mention Ani Levator and Pudendal nerve issues and I am convinced nobody has a clue as to what I am talking about as they hastily change the subject! All of my symptoms totally match PN such as pain when sitting, total relief when sitting on a toilet and relief when walking and standing. Whilst typing, I am standing up straight with my IPAD balanced on boxes so I am standing in the correct position, and still I have the aching, burning sensation in my back passage. Today I have taken my Gabapentin, Paracetomol and Ibuprofen but none of this has helped really. I manage to sleep like a baby and am not in any pain at all when lying on my side to go to sleep. The pain doesn't return until I get out of bed and walk around the house. It is 1pm and I still have not sat down today as I am frightened to! I have tried so many expensive cushions recommended for pelvic pain etc and none of them work. I live in the UK and keep seeing a cushion called the Theraseat but this is only sold in the States - plus it is soooo expensive. I contacted them via email and they said that they would distribute to the UK but this would be at a cost! I wouldn't want to waste my money by paying out for yet another cushion which doesn't work and gets hidden in a cupboard with the rest of the others! I have even attempted to make my own cushions such as cutting out foam in different shapes and also making seat pads which just supports the buttocks and leaves the "undercarriage" free. This hasn't worked. I cannot get to see my doctor for another 2 weeks but in the meantime my partner has found a Pudendal Nerve site which mentions experts in this field and are based in Bristol and Manchester. They do private and National Health patients so this is what I am going to ask my doctor to do and contact them and get me booked in. Apparently, PN is not a well known medical condition and medics haven't got a clue, apart from a few specialists who were trained (these two I found online in Bristol and Manchester are two of them) in France by someone who is a well known specialist. I am hoping my doctor will sort something out for me. I was employed up until 31 July and was then made redundant. At this job I was given a varidesk to stand my computer on and had special chairs supplied but now that I should be looking for a new job, how can I, when a new employer would be totally put off if I ask for these special working aids be put in place for me?? There is no use in me looking for a job until I get this problem sorted. If anyone has any ideas or experiences which may help me, I would be so very grateful. Thank you for your time in reading this post. Carol
Pudendal Nerve: Hi, My pain started... - Pelvic Pain Suppo...
Pudendal Nerve
Carol, I have just recently received treatment for pudendal chronic nerve pain injury. I suffered excruciatiing chronic pain every waking moment of everyday. Like you, I sought help from my GYN and my family doctor. Though they tried to help, they had absoutely no idea of what could possibly be causing the pain. I won't go into all the detail of my journey of over 2 year of this constant pain. I got no relief standing, walking, or even lying down. Early on, it would take an hour or so before the pain started after I had gotten out of bed in the morning, but eventually the pain began as soon as I got up. The only time I got relief was when I was sleeping. And, yes the toilet seat took away the pain immediately! But, it would return before I even exited my bathroom. I too work on a computer and tried various cushions and I truly considered by a toilet for my desk chair!! I tried Gabaptenin but I could not sleep at all when taking it and my anxiety went through the roof. Over the two years, my doctors tried various medications and before I found my miracle I had gone from taking 1 pill a day for my thyroid to having 5 medications including narcotic pain medication which would not take away the pain but would take the edge off. To make a long story shorter, this pain absolutely stoled my life. If it had not been for help from my family, I would have lost everything. I couldn't work and very often couldn't even function. I experienced things that I had never experienced before, depression, loneliness, agoraphobia. I was never suicidal but I certainly wasn't living either. Research finally uncovered the pudendal nerve and my doctors immediately agteed and my gyn did pressure points to truly diagnose me. I went to intensiver physical therapy which like everything else I had tried seemed like my miracle only to become a bit helpful and eventually of no help whatsoever. My father finally found a doctor in Nashville Tennessee that specializes in helping women with pudendal nerve pain/injury. I called to get an appointment immediately. I saw him once and a few weeks later I had stem cell injections as an out patient procedure. I was told that it would take 3-6 weeks to heal the nerve enough for me to start seeing results. But, by week two my pain was subsiding. I am now 9 weeks out and have a bit of muscle pain on the left side of my vagina but my I am already on cloud nine because I have my life back!! I have many pain free days and as I said with the muscle issue some days I do have pain but it is nothing compared to what I used to have and it is manaeable. I know do my own massage on the muscle as I had watched utube videos on how to do it and learned in my therapy that I was doing it correctly so I have not returned to therapy and I have my mother massage my buttocks deeply with her elbows as often as I can. There is a definite connection as when she does this there is pain deep in my left buttock, which was the side that my never was damaged, and after I am completely pain free for days. The doctor also told me to return to my yoga and that also is a tremendous help.
I don't know if coming to the states is an option for you but if you would like to contact me I would be glad to give you the information and I could also give you lots of tips to relieve the pain temporarily. if you would like to contact me just message me and I will get back to you as quickly as possible. It is now my mission to help as many women as I can that have this horrific condition.
Have an amazing day and God Bless
Dana
Hi Dana, how lovely to read your journey through this horrendous pain so many of us are going through! I live in the UK, recently been made redundant from my job of over 40 years, I am out of work and still have 4 years left until my State Pension in the UK kicks in! This is also worrying me because I am unable to apply for jobs because of the awful pain I am in. No one will employ me in my current state. I am hoping to get a referral from my GP to a Pudendal Nerve specialist in Bristol, UK but this could take weeks, even months (unless I pay privately). I would so much appreciate it if, as you said in your post, you could send me hints and tips to at least alleviate the pain for a short while. Looking forward to hearing from you and many thanks again for taking the time to explain your condition. This site is giving me hope! XX
I am going through similar situation for the past three years. I live on oxicodone have had every kind of procedure and meds.even botox injections to no avail. I am interested in any advice you can offer including stem cell
Hi Dana, I am not sure if you sent me tips and hints of pain relief but wondered if you could be so kind as to send me them because since having my first nerve block injection two weeks ago, I feel worse than I have ever done before!!! I am determined not to go for decompression surgery as I believe the right exercise/massage will put this right - it is just knowing what to do and something which doesn’t make the pain worse and create more damage! I hope you are feeling better and better as each day goes by and my heart goes out to all of the PN sufferers out there because no one understands because as you say, we look normal on the outside but under that smile we put on, we are crying inside with the tremendous pain. Looking forward to hearing from you. Lots of love and take care, Carol in the UK xx
I almost cannot believe what you have written, I could have, it sounds like me but I feel it has effected my bowl too.
I too have lots of cushions, my best by was a yoga block because it is hard as I can tolerate a hard flat surface better than a soft one.
I keep getting told I have divirticulitis near my tail bone. But who with diverticulitis can't sit down!!! I agree with the PN.
I am sorry as life is hard and people and friends view you as looking fit and well.
I hope you get answers
Regards Sheena
Hi Sheena, this is so frustrating beyond belief for us isn't it? We try to carry on with our lives, look normal to everyone out there but they have no idea of the pain we are enduring every minute of the day. I am such a happy person but this pain is knocking the stuffing out of me and I am slowly becoming a recluse because I cannot go out for days or meet up with friends because everything involves sitting down at some stage! We have to be positive Sheena and keep reading everyone's posts on this site and hopefully someone's experience and recommendations could help us and other sufferers return to a half normal life. Take care and keep reading these posts like I am going to do now! Love Carol x
I am so grateful for this site as no one else understands. I found out I am going to be a granny next year, I should be so excited but all I can think of is how rubbish I am going to be as i am mentally always thinking, what I did to have a good day, why did I have a bad day, why won't this ache go away and why me. I can't look myself in the mirror some days because I know I will cry when I meet my eyes.
But then I think it could be worse at least I'm here, tell myself to shut up and get on with it.
Sorry to ramble
I wish you only good days ahead
Hi Sheenahete51
Hope you are doing well
Could you please tell me how is affected you bowel movements?
I feel I may have PN or levator Ani but I'm trying to figure out if changes to bowel movements is a symptom
Hoping you can get back to me
Hi,
Things have changed a bit as I can now sit down ok. My bowel/ rectum seemingly has a muscle that’s too tight and that’s why things are so painful.
My bathroom habits change all the time, I thought laxatives helped and took pressure off but I think gas can give me as much pressure too. I felt like I never emptied my bowel and it was just so uncomfortable all tbe time.
I don’t really use laxatives much now but I use a douche bulb as this helps get things passed the tight muscle. But some days I’m in the bathroom lots and some days just 2-3 times.
But I have a really tight leg like sciatica and it could all be from that. Nothing makes sense
I hope this helps you.
Take care
Happy to hear you are overall doing better
I was trying to see if the irregularities you saw in your bowel movements were changes in the shape, size of it
Dr Greenslade, pain clinic Southmead Hospital, Bristol and surgeon Mr Wong at Southmead.
Your story is typical. Do not judge doctors too harshly, the condition is not common. I am male and it took over 8 years to get a diagnosis and then I had to apply for funds for the operation being a veteran helped with that. It was no miracle cure but two years on I am pain free most of the time but it can return on long car journeys.
I think my condition started with a trauma. Some females develop it after child birth or surgery. However some just seem to develop with no obvious cause.
Do not just stand back and rely on Doctor. Be polite but be pushy!
Trevor Morgan
Stay focused and stay strong
Hi Trevor, thank you for your reply to my post. I am seeing my GP in 1.5 weeks' time and keeping my fingers crossed that she will refer me, upon my request, to the Bristol specialist which is about 1.5 hours' drive from my home (my partner will drive me). It is reassuring to read that you have some pain relief now, albeit a long wait for this outcome for you! Every cushion under the sun does not help alleviate the pain when sitting and I have spent £100s over the last 2 years on these. I am so depressed at the moment but since reading all of the responses to my posting, has lifted my spirits and given me some hope. Thank you once again for finding the time to respond. Carol x
Cushions did not work for me either
I fitted toilet seat to chair and I have one for car seat!
I had to drive 1 hour plus north on M5 to get to Southmead but for me it was worth it.
As a female your symptoms will differ. The may give you a nerve block injection which is easier on females. This should give you total relief for two or three weeks and that will confirm it to be the pudendal nerve.
Then you may need to apply to the Clinical Com missioning Group local to you if you require an operation
The here and now can be painful and nasty. So, keep your mind on the far horizon.
You could try mindfulness that helps me.
Did you have any sort of lifting heavy objects just prior to this pain? Hernia of some sort? Avulsion? Enterocele? Ask to see Anthony Dixon at Bristol Hosp. Google his contact info. I was going to him but I'm in US and he wouldn't schedule me.
Hi Judiraburn, No hernia but I when I was given a routine colonoscopy, the specialist told me that I had slight rectocele/diverticulitis but nothing major. I am going to speak to my GP here in the UK and request an appointment at the Bristol Clinic. I genuinely hope you and all of the other sufferers find answers and pain relief! Take care, Carol xx
Hi Carol, You have exactly the same symptoms as I do. I have had MRIs, ultrasound, CATscans, massage therapy, PT, pain management, injections, etc. The injections were for the pudendal nerve, sciatic nerve and tailbone area. It has helped but I still have pain daily.
Right now I am going to a Chiropractor in Denver, CO who does adjustments, biofeedback and neurofeedback. I thought this made sense to try to train my brain not to feel the pain all the time. I have only gone twice so far. He says it could take 3 to 9 months and he looked at my pelvic MRI and said that my tailbone isn't in the right position and I am compensating for that. I do know that when I sit on pillows turning sideways so that I just sit on one cheek seems to help.
Good luck. I know this really is an awful thing to have. I've had mine for a year and I'm living with it better when it's just at about a 4 or 5 on the pain scale with all the information I have gotten about it. I would love to get rid of it altogether but no one seems to know how to do that so I try to keep it at a dull roar. I'm 61 and I have no idea how I got this. I had never even heard of it before. It's great to have a place like this to talk to people to get different ideas on how to handle it.
Lisa
Hi Lisa, I was told after being put under general anaesthetic and having a full investigation carried out to my tailbone, that everything was normal. I then went down all of the other routes to try to ascertain what was causing the pain. Right from the start I had read up on my pain (2 years ago) and all of my symptoms related to Ani Levator and every time I mentioned this to GPs and medics, none of them knew what this was!! It doesn't give us much hope does it! I am hoping to get a referral to see a Pudendal Nerve specialist in Bristol, UK; how long this will take, who knows but at least it will be another avenue to follow. I too, when sitting, transfer my weight from one butt cheek to the other and although it is a killer when sitting in a place where you have to sit, I try to hide the grimaced look of pain from my face!!! I am 62 and was diagnosed with MS back in 2009 and luckily for me, MS does not give me any problems apart from experiencing optic neuritis twice in 7 years (which is really good). I have spoken to my MS specialist and he assures me that my pain is nothing to do with MS. Take care and good luck and let's just keep on this site and reading other people's experiences and hopefully we will all find an answer! Carol xx
I've had Chronic pelvic pain for 13years. I have both vaginal and rectal pain. On the 19th I'm having surgery. It's called Ganglion Dorsal root Stimulation. Complicated! It's new in the US but they've been doing it in Europe for years. I've tried everything. This is it for me!! Google it and see if that might be a possibility to look into for you. Good luck
Good luck for the 19th lexi1221 and let me know how you get on. I will definitely Google this. Thank you so much for your helpful response. Carol xx
I will definitely let you know!!! Thanks!
I have had perineal, especially anal pain for 2 1/2 years and my story is just like many of the other ones. I have had several nerve blocks , Botox twice, PT, acupuncture, dry needling, and a trial with DRG stimulation at L1 S2. I was pain free with all the surrounding glute, low back, SI joint pain, but the anal pain started back mid trial. The Dr. indicated that if I had the implant he would go lower with leads bilaterally at S3. I decided to wait on the implant. How are you know? Where are your leads? So hope that it is working for you!
Hi Carol, I completely understand ur pain. I am out 20 months with this excruciating pain. I live in the United States but just recently was sent to a pelvic pain specialist. Yesterday she gave me a tool which seems to be working. Please private message me and I will give u details. I am praying for a miracle for all of us. Misti
From a non medic - have they ruled out a prolapse?
Hi hoopwhirl2007
I was reading your post and you mentioned the Theraseat I also live in the U.K. And sent away for the Theraseat and I dident help at all what doesn't work for me might for someone else I have bought 6 cushions and none of them work I seen a post saying to buy a raised toilet seat and cover it in foam that works for some people it maybe worth a try Janebee xx
Hi Janebee, thank you so much for responding to my post. I ended up purchasing the 'bony parts' Putnam cushion from Amazon. I emailed Putnam before purchasing and out of all of their cushions, they recommended this bony parts one as being best for Pudendal Nerve problems. It arrived yesterday and I gave it a go. It is comfortable to sit on, however, it is strange because I now have another issue as a result of all of my "undercarriage" being suspended on this cushion, it has left me with total numbness in the anal and vaginal area. I am waiting desperately for my appointment in a week and a half to speak to my GP requesting she refers me to a specialist in Pudendal Nerve issues. I am to sure how it works, but I was hoping to ask for a referral for a private consultation and once on the books, to then transfer to NHS?? I, as many others with this problem, am tearing my hair out in desperation and although I am an upbeat, positive person, I am beginning to sink really quickly. Xx
don't know what to do next re pudendal nerve treatment
Pain management pudendal neuralgia 
