Health Organization for Pudendal Education

Hi. I am new to this forum and do not know if I have pudendal nerve problem but am beginning to think I might from what I am reading. I have had problems with pelvic instability since I had my first child in 2006 then when I had my second in 2008 my back problems got worse and I was was really suffering with pelvic and back pain related to instability. In August 2009 I had to have a laparotomy to remove an ovarian cyst (was meant to just be a laparoscopy but apparantly cyst was too big). In November 2009 I saw a physiotherapist about my back and pelvic problems. She realigned me and did a lot of work - nerve sliding - she said I had tethering of different nerves including pudendal.

In December 2010 I went back to work from maternity leave and that is when the sitting pain began. Oh my goodness I was in so much pain. Trying to work and sit at my desk - it was horrendous. The pain being right underneath my sitting bones in the exact same places as the diagram below (sorry but I took this from somebody elses post I hope that is ok) where the circles are. Anyway, I started to see another physio in London who referred me to a physio who works with pelvic floor muscles. She did lots of massage on me telling me that the pain is due to trigger points all over that area and that when I sit down it is not soft and squidgy but like sitting on hard balls. I went to the doctor and got amitriptyline for the pain. Her massage and the amitriptiline was helping. The pain was there but not so bad and I was managing ok,but still in more pain than I should be. Was at the pain clinic at a London hospital and they told me there is nothing more they can do but they would like to refer me on to Dr Baranowski and St Mary's London. That was in October last year. I stopped seeing the physio in London and started seeing an osteopath nearer to where I live. However the last couple of months I have been in lots of pain again. And sitting at work right now is almost unbearable. The pain is horrendous and its really getting me down and taking over my life. Today it has been awful - I have upped my amitriptyline to 40mg from 30mg and have been taking ibuprofen today too. The only thing that helps is if I get up and go for a walk then it relieves it for a bit until I sit back down again.

Its good to find that I am not the only person who gets pain in that place. Its so hard to describe to people. Its right on my sitting bones.

I phoned yesterday to ask when I am likely to see Dr Baranowski and was told there is a 12 month plus waiting list!!! So looking at October time or even longer. Don't know if I can wait until then. Has anybody else here been to see him and what is he like. Was he understanding??

Does it sound like my pain is the pudendal nerve? I have to say I do not have any other symptoms as in any pain within that area. Just the sitting pain. Oh and I found out last week that I have a slight bladder prolapse and my pelvic floor strength is practically non existent.

Well thats it for now. Its good to know that there are others who understand how painful and depressing this can be - not that I would ever wish it on anybody!

x

Dear Looking,

I'm glad you found this site. It does sound as though your pudendal nerve is involved in your pain. My first advice to you is to STOP SITTING! Get yourself a laptop and put it up high on a shelf so you can stand while working on the computer. You know yourself that sitting aggravates your pain so just stopping doing it. If you have a deskjob you could ask your employer to buy you an adjustable height desk which moves up and down with the push of a button. I find that I spend most of my day standing and only minutes at a time sitting.

You should also get a cushion to remove the pressure from your sit bones if you have to sit. There are numerous examples on this site. For possible medications to treat your pain, people usually first try Gabapentin or Lyrica. There are many discussions about medications on this website.

It is a shame that you cannot see Dr. B for another twelve months. In the meantime, you might have to educate your GP about pudendal neuralgia. There are links to some helpful publications on this site that you can discuss with your doctor to discuss the best treatment plan for you as you wait to see Dr. B.

There are several HOPE members who live in England, including Calluna and HelenLegs. You might want to ask them about health practitioners in England who are knowledgeable about treating PN. To send a personal message to any member ("PM"), first click on the "Members" icon above and look for their names.

Good luck and welcome to HOPE where you are among friends.

Warm regards,

Lernica

I am so sorry to hear of all your problems. You will find this site full of helpful information and suggestions just use the search. I am not from England but as Lernica states there are several members on this forum who do and should be able to give you some additional suggestions.

As Lernica stated, the first line of defense is to stop sitting. Look for a cushion with a whole cut out in the center, like a toilet seat, to try and see if that helps.

You are in my thoughts and prayers as you start your journey for answers and healing.

Looking, you could try to get in with Dr. Gareth Greenslade, a pain consultant in Bristol -- maybe the wait is not as long? It seems like you need some more effective pain medication while you are looking for a more permanent solution.

Hi. Thanks for your responses. I have found the letter from the physiotherapist that I saw in November 2009. She said that I had a number of problems and spinal malalignment issues and that I also had

Fascial attachments Left Coccyx tight
Right superior gluteal nerves tethered
Right pudendal nerve tethered around pelvic rim
Right pudendal nerve tethered in glut
Left obturator nerve/obturator foramend tight
Bladder slightly adhesed on Right

She did nerve gliding techniques on me.

At my second appointment she found that my pain 'under the pelvis and on the left and right sides' was in the obturator nerve and the pudendal nerves bilaterally. The iguinal ligaments were also thickened and may be indicative of tethering in the genitofemoral, iliohypogastric and ilioinguinal nerves.

Is it really possible for a physiotherapist to know all of this from massaging me??? Any views???

Thanks x

Some of the PT's are very educated on the anatomy (even more so than some physicians) and if experienced they can detect abnormal tissue and tell you what the landmarks are. Even the surgeons say that you can't always tell if there's an entrapment without going in for surgery so the conclusion that the pudendal nerve is tethered in the glute has me a bit puzzled. I don't recall hearing of a PN tethered in that muscle.

Hi there Looking,
I have not ever seen Dr Baranowski but he does seem to be well regarded by those that do see him. As Violet mentioned Dr Greenslade in Bristol is the other person to see. Many people have opted to see one or the other privately initially to try and cut the waiting time down BUT once transfered to NHS the waiting time is still fairly long for actual treatment. Both do diagnostic block injections.
Dr G costs around £200 and Dr B £425 for the initial private consult at the moment. I'm pretty sure that the waiting time for Dr Greenslade is not as lengthy as you have quoted for Dr Baranowski.
Once transfered to the NHS (usually easy to get the referal) you won't be able to swap and choose I doubt, so making the chioce now could be important, not for treatment from either Dr. but Dr B will refer any surgery on to Professor Carlstedt (London). The 'Bristol team' surgeons Dr Wong and Patel seem to be 'newer' to pudendal nerve decompression but they did train in Nantes under Prof Roberts who was the first to perform this type of op.
Going to France is another option, at one time the only one.
I haven't ever heard of any feed back from post opers at Bristol, maybe they are all sitting in restaurants and bars by the Avon .
The UK contingent seems to be growing, we will have to have a meet up one day.
Take care,
Helen

Hello Looking - I am sorry to hear that you have had such a difficult time.

I too am in the UK, I am not far from Bristol and have been to see Dr Greenslade at Frenchay Hospital through the NHS. The wait was 10 weeks. In my case the diagnosis is very clear, and he doesn't think I am likely to benefit from nerve blocks. So he has referred me to Mr Dixon, also at Frenchay for laparoscopic surgery to see if things can be sorted out a bit, I am still waiting for an appointment there, it has been almost 6 weeks now. If surgery doesn't work, he's going to refer me to try a neurostimulator.

Anyway! I completely agree with what Lernica says - you absolutely have to stop sitting, except on an appropriate cushion. I use a Togu Air Active Cushion which I got from Amazon, pricy but for me it is worth every penny.

I think that the suggestion from your pain clinic to refer you to Dr Baranowski is excellent, this is just what you want.

Whilst you are waiting to see Dr B, you have a good opportunity to try lots of different things that help many of us. Lifestyle changes are top of the list, also medications. Amitriptyline is the first one, after that people often add in gabapentin. Many people get the best results with an antidepressant (like amitriptyline) and an anticonvulsant (like gabapentin) taken together. So that's something well worth trying. Consultants usually want you to give these things a shot. (I had tried all these meds before I went to see Dr G, I did get some pain relief but I couldn't cope with the side effects.)

If ibuprofen helps, then you may find something a bit stronger helps a bit more. My GP suggested naproxen, it didn't do anything for me, but that doesn't mean that it might not help you. Many people do find anti-inflammatories helpful.

Something else that occurs to me - there is a book that I have found very helpful, Coping Successfully with Chronic Pain by Neville Shone - I have recommended this on the forums before and I've heard that other people have found it helpful as well. Lots of good information in there, I think I found something useful and relevant in every chapter, and I use lots of the stuff in there on a daily basis.

I hope that things improve for you soon.

Thank you for all your kind welcome messages. Its nice to know that there are people out there who understand how this whole thing makes you feel.
x