Health Organization for Pudendal Education

Hello fellow PN sufferers
I am a 51 year old mother of 3 daughters who lives in Sydney.For 3 months I have had pelvic, vaginal and vulval pain /burning[For 10 years before this on and off had milder left pelvic pain was told was adenomyosis but I think now was PN.].I had several very bad attacks like a searing hook in my vulva that left me desperate and in tears.I went to my gp who had no idea and just did a urine test, then to my gynaecologist .An ultrasound completely normal as was an internal examination.He thought it was the round ligaments!!I asked if I could see a physio in desperation, so he referred me to one physio who just said I has irritated nerves from a bad attack of thrush!!Then I went to another pelvic physio]Barbara Hungerford] who said she thought it was Pudendal Neuropathy.I then went to see Prof Vanscaille and Sheryn Davis.Prof Vanscaille examined me internally and discovered a painful pudendal nerve when touched and an enlarged bulky sore left obturator internus muscle.For many years I have had sacro iliac joint problems and am very hypermobile with an unstable pelvis.Prof Vanscaille thought the sacroiliac joint and obturator muscle have something to do with my PN plus he thought one leg is shorter than the other and i should see a podiatrist!He said I have mild PN and the nerve is not entrapped, he didnt offer diagnostic injections as he seemed pretty sure of the diagnosis.So........my plan is to continue with physio and self help, and then maybe botox injections if not enough relief from physio.I am seriously considering going up to Brisbane to see Peter Dorman after reading about him on this site.In Sydney there doesnt seem to be a physio who knows about both the pudendal nerve and scaro iliac joint problems and their interaction.I ve thought of seeing Sheryn for the nerve and Barbara for the joint, but not sure what to do.Self help has helped me quite alot-I avoid sitting and use a noodle cushion when I have to, I avoid bending and squatting, and am trying not to strain when going to loo both number 1 and 2I also try to keep the pelvic muscles as relaxed as possible..I have had two really good weeks with only low level pain, then yesterday and today its worse again!Maybe because ive had a gastric bug, I dont know.This condition obviously flares up and down, and I have to accept thatI am grateful I havent had another agonising attack since I stopped sitting.I really would appreciate anyones ideas about physiotherapists and physio treatment.I am .interested in trigger point release , Sheryn says she does it but not at present for me as she doesnt want to stir things up too much yet.Also, I was offered Endep but have read about nasty side effects, I dont want to be zonked out.Does anyone have any experience of this?Thanks everyone, wishing you all a pain free or at least tolerable pain day!!
From Mirandamolly.

Hello
Sorry to hear about your pain and how it affects it your life.....but the good thing is you have seen Dr V and given a diagnosis. (I had surgery for PNE by him in July 2008 and travelled from Perth, but have a much better quality of life now!)
Just a word about physio treatment. I would be guided by Sherin as she has examined you and has the knowledge about PN needed by a physio. I am seeing a physio in Perth Judith Thompson-weekly for massage of external muscles and internal trigger point therapy. Like Sherin she is specialised in womens health physio and runs the course to train other physios in this area. She also lectures at university and is active is research.
I know Sunil has recommended Peter Dornan in Brisbane, but my physio who knows him, said to me that his treatment is suited to MEN ONLY -as he comes from an urological background - not womens health. My Physio strictly said for me warn people that his exercises are not suitable for women with PN. I don't want to start an argument - but all the women physios -including Sherin- who went to his presentation at a conference agreed that his techniques are great for MEN (Sunil it is great that you have found him a help and that you can tell other men suffering about him- as it must be hard for men to find the right treatment)
I think it is important to realise that men and womens pelvises differ and need different approaches....you can't go past womens health physios for women- womens hospitals are the best place to find the right physios or when booking in with someone- 'interview' them about their experience in this area.
I found medications to calm the nerve very effective and would say - give it a go-you don't know until you try something!
Hope you find something that helps xx
Vanessa

Dear Sunil and Vanessa,
Thankyou so much for your excellent advice.I just got home from work after a long and tiring day[with nasty vulval pain] and it was so nice to see your messages.I am seeing Sheryn again next week and will ask her how best to deal with the sacroiliac joint issues,I know there is an osteopath who works in their clinic, maybe she could help.Barbara Hungerford is an excellent womens pelvic physio who is an expert on the sacroiliac joint, but she doesnt know much about how to treat PN and does no internal work.For example, although she suggested I had PN, she still advised me to pull up my pelvic floor, sit on my sitting bones etc.Oh dear!!!!!Vanessa, may I ask you a few questions.What medications did you find helpful?And, did Dr V do the diagnostic anaesthetic injections?With me, because of my history and on examination the nerve was very painful he seemed satisfied that I had PN and didnt think the injections necessary, but he also seemed certain in my case the nerve wasnt entrapped.Sheryn said only 1 in 10 cases are entrapped.I think Im going to have to see a psychologist that specialises in helping people deal with painful conditions.Im having trouble adapting to the fact that I now have a horribly painful gential condition for which there r no easy solutions and no definite end in sight.I seem to b able to deal with all my other pains with this, but I particularly hate the vulval sharp pain.
Im praying alot right now I can tell you.
Im so glad that you Vanessa have a better quality of life now after the surgery, and that you Sunil are getting good results from your treatment with Peter.
Best wishes
Mirandamolly

It is always comforting to see messages from people who understand your pain EXACTLY isn't it?
Well I had my diagnostic injection (pudendal nerve block) by my gynae in Perth, and when I was in so much pain my quality of life was on the couch 24/7 with morphine (I had to give up my nursing job (would you believe I was a gynae/urology nurse?! the irony!) and i had 7yr old twins at the time)...I was a candidate for surgery immediately - my gynae told Vancaillie not to put me through anything else, just to do nerve decompression (I was trapped both sides)
I tried Endep and it did help, but found I was very tired in the mornings...then tried Lyrica but side effects too bad to continue (made mistakes at work, drowsy so much almost crashed car)...so went back to old style drug Neurontin (Gabapentin) and is great for me...I see a pain specialist as I'm still on narcotics (morphine) in evenings...trying to wean off them at the moment.
I feel 60-70% better after the surgery, but getting improvements all the time- I see 2 physios a week (Judith for womens health) and then Prue for rehab physio (being bedbound for 2 yrs caused me to lose a lot of muscle strength etc) and we do exercises/pilates but only ones that are PN aware. I'm back walking the twins to school every day and getting back into hobbies again which is great.
But it took me a long time to find the team I have...you are so lucky to be in sydney where the team is all set up in one place! I've heard great things about osteopathy and that with Sherin you might find will do the trick. DO see a psychologist- one that specialises in pain management is good and they give you strategies to keep living despite the pain (not waiting to get better before getting back into life....one lesson I learnt the hard way). Talk talk talk-online or in person- it is what seems to help us get through. Shame you aren't in Perth- Catherine A and I are starting a support group at the womens hospital here next weekend- there are 3 of us who have had surgery and are lucky to have that support locally.
Hang in there- and good luck!
Vanessa

Hi mirandamolly,

I am in Sydney and have undergone the surgery and now have the spinal cord stimulator. I am in numerous meds to help with the pain which is looked after by my pain doctor. Feel free to pm me if you would like to have a chat

Sorry i should of specified I had the pne surgery

Just wanted to let you know that my physio knows of a PN aware physio in sydney who she trained- and will give me her contact details next week- someone as an alternative to Sherin- will let you know when I can!
Hope you have a good somewhat pain free weekend!
cheers Vanessa

Dear Ness, Sunil and Ezzl,
Thankyou all so much for your replies , it has meant alot to me to know I am not alone with this bloody horrible condition.Ness, I read your story in an old post, My God!!!!!How incredibly brave you are!!.I have no doubt so many of you have been to Hell and back with this pain, but reading your story Ness has inspired me.If you can survive this, so can I!!!!!!Dear God, Ive only had this for 3 months and Im whinging and whining!!![Quite probably very on and off for 10 years, but alot milder and not the horrible vulvar symptoms].I also dont have a little baby to look after!!Ness, I would be extremely grateful for that physios name, as so far I have only Sheryn-It would be wonderful to have another physio, as I dont know how much trigger point therapy Sheryn does and I think thats what I need.My plan is to see Sheryn this week[I last saw her a month ago, which is what she recommended, seems such a long gap.]...I shall ask her exactly about my case, the sacroiliac joint connection , then the following week see Barbara Hungerford[a sacroiliac expert but knows little about PN] and ask her to check my leg length, and ask how I can rectify sacrioliac joint without stirring up PN.
Im also seeing my gp for stronger painkillers than panadeine, I took tramadol years ago afer a haemoroidectomy[sp??] so will ask for that.Im not ready yet to try Endep or Neurontin, but will discuss it with gp as a future possibillity.Im so in the early days of dealing with this.Im also going to ask gp about pain management psychologist.
Sunil, thankyou so much for all details about Peter.I am interested in his approach, and will certainly make further enquiries.I certainly have him in my options for treatment thats for sure.I have not had a great week, seem to have had a flare up that has resulted in more vulvar soreness/ burning/pain .But....I did go to my daughter's graduation and dinner afterwards[I stood for most of ceremony[, helped my mum with her open house on sat and went for a beautiful walk along beach yesterday.I remembered a discussion on this board about continuing with life despite the pain, we will not remember the pain, but we will remember the memories.
Ezzl, I shall attempt to pm you now.
Mirandamolly.

ness70 wrote:Just wanted to let you know that my physio knows of a PN aware physio in sydney who she trained- and will give me her contact details next week- someone as an alternative to Sherin- will let you know when I can!
Hope you have a good somewhat pain free weekend!
cheers Vanessa

Ness, can you let me know if she wants to be added to the list of PN PT's from Australia -- and give me the contact details? Thanks.

Hi Miranda Molly,

I'm Catherine from Perth. I would have replied to you sooner but I've been a bit unwell this past week and haven't logged in. I am also a patient of Prof. V and traveled to Sydney every 12 weeks to be treated. We are fortunate here in Perth now to have a few doctors and Physios. visit Sydney & the US to learn more of our condition although Randwick (Royal Hospital for women) is way ahead in the research and treatment of PN. & PNE.

After 7 years of hell, I've recovered very well. It's been one difficult journey of pain but I'm now almost 100% better. Not very far off, but it's taken me a long, long time to get here. Just know that we are here to help and support you through this and things will change. It won't happen overnight but it will happen. Some people recover quicker than others, 1/10 patients will progress to PNE surgery, It used to be 1/3 patients but some people did not recover given their age, length of time the nerve was trapped/damaged and other health issues. Treatment and recovery differs from one person to another. Depends on how badly damaged the nerve is. Depression hits all of us as we suffer this intolerable pain but hang in there. Stay strong and try not to stress too much. It's not easy as we all know. The PN team in Sydney will plan your treatment according to you as an individual. You're in good hands and the only multi-disciplinary clinic in Oz.
They're a great team. So 9/10 patients will not progress to surgery as other treatments have helped over time. Surgery is a very, very last resort for people who have not responded to other treatments and you may very well recover in time without surgery so don't stress over that when you hear about this. 3 of us here in Perth are doing very well since having surgery. I'm at 4 years post op and the other two are at 3 years post op but we had to have two years of other treatments beforehand. There are a few people from NZ who recovered without surgery but these people move on with life and don't often log in to this website any more. Stay strong. There are a few women from Sydney on this site who are working with the hospital to start a support group. Ask Prof. V or Sherin to put you in touch with them.

Catherine