newbie from sydney

[mirandamolly]

Hi Catherine,
Thanks so very much for your kind words of encouragment and support, it means alot to me.How you and the others here have suffered, and yet you reach out to help others.Just to think a few months ago I didnt even know I had a pudendal nerve!I am so very happy to hear of your recovery and how now you have found relief,what an absolute blessing and a well earned gift for you.thanks for reminding me that only one tenth of cases progress to surgery, I have to say that it is easy to get a skewed view when reading posts and feel that surgery is inevitable.I am hopeful that I will find an answer that will cure me in time.I know now that I have to be patient and prepare myself for the long haul.At present, all Prof V has recommended is physio, the osteopath connected with the clinic and to look into my leg length and sacroiliac joint.Sherin has recommended Endep and cortisone trigger point injections but I decided against both these options for now.I would seriously consider botox if things get worse.Luckily, I have good weeks and bad weeks, some days I only have mild aching pain moving around the pelvis that is quite tolerable, other days I have the horrible vulval symptoms but I now have Tramol to take for flares.Im managing to work and continue with my life thanks to self help mainly, and avoiding triggers. I just am praying things dont get worse, as I feel this is the limit I can cope with!Step at a time, day at a time.Thanks again Catherine,
Mirandamolly

[gataliex]

Is physiotherapy a sought after profession in South America? I am in my 20's and studying physiotherapy, and when I graduate I want to move to South America to work as I speak Spanish.

[Jackson]

Hi Newbie,

I've had a digital rectal test by PT showed pelvic floor myalgia (and the examination was pretty convincing)which could be affecting the pudendal nerve. So it's very tempting to having a botox block. However my genital pain came on after a urological scope and within weeks was a 9/10 scale. It's been there in one form or another since the scope so I'm convinced that the scope was causal. Perhaps this is in the wrong forum. Guess what I'm saying to Newbie is that some times it can be complex. In your case I hope it's not and you can get a very definite diagnosis and treatment. But I think Prof.Vancaille put out a statement recently saying ' we're are now finding SIJ function and piriformis syndrome can be associated with pudendal pain'. That's a paraphrased version.

[tobyblack4]

Hi Mirandamolly,

I am a 35 yo womman who has been going to Prof V's clinic for 2 years now, and they have brought me a long way. I have pudendal neuraligia, and it causes me burning, itching, sensitivity and also hip and lower back pain, and the worst pain being muscles spasms. I've had the cortisone trigger point injections (didn't help) and have been on Endep for 2 years - it's such a low dose that all I notice about Endep is that I need about 9 hrs sleep a night to not wake up feeling a little foggy, and that extra sleep each night seems to help lessen the pain. I found taking the Endep at 6 pm instead of just before bed helped me feel less tired as well. Also, I have psyllum husk capsules each day to help avoid constipation.

I'm about to have my 4th lot of botox injections; over time we've found that having it all in the obturator internus muscles helps my lower back pain. Also, I would not have progressed this far without seeing Amy, the osteopath in the group. While Sherin and the Botox injections helped, Amy looks at your whole body and the effect the PN has had. Sometimes I will go in with one leg shorter than the other and extremely tender on the pubic bone, and then after she does her releases and work, my legs are back to even and she can use the same pressure on the pubic bone without any pain. I've had trigger point therapy in the past, and she does a similar thing - she really has a knack for finding where the points are by listening to you explain what sort of pain you've had since your last visit.

Anyway, I just thought I'd give you my feedback re Endep, Botox etc. and I really do recommend trying their osteo. And seeing them all in the same group really helps because they can all see what each other is doing for you and work together. I saw all three in one day a month ago to come up with a plan to try a new med and then have Botox if it didn't work.

Good luck!
Lea

[mirandamolly]

Thanks so much everyone for your advice.Thought I should post an update in case it helps others.
Well, it has been one year exactly since I literally woke up one day with PN pain.I am now 80% improved, and believe I now know what has caused my pain thanks to Amy Cocoran-the osteopath who works at the Sydney PN clinic with Prof Vancaille.Pelvic floor physio did not really help me as my vag examination was normal, I can have intercourse, use tampons etc.This seemed to indicate that pelvic floor muscle spasm was not the answer.[I did have muscle trigger points up the rear end apparetly, but was not prepared to work on them as too painful as lots of scar tissue from previous haemoroidectomy.]I knew I had previous sacro iliac joint problems and am hypermobile so decided to see a sacro iliac joint physio in Sydney.This helped a bit, but I realised this physio didnt know enough about PN so I saw Amy the osteopath.This is when the puzzle began to be put together.
Amy knew straight away what my problem was.I have an unstable rotated tilted pelvis.One leg is a bit shorter than the other.I have an unusual external pattern of muscle dysfunction, my left side is tight and the right is loose/hypermobile.One sacro iliac joint is locked, one is loose and keeps popping out.The piriformis muscle in left buttock is very tight.All my problem is in the left buttock, because of the tilted pelvis, sacroiliac joints, muscle tightness on the left, there is tension on the scarotuberous/spinus ligaments and the nerve is being irritated in between the ligaments and piriformis muscle.[This is my best understanding,I hope this makes sense.]
All I know is that Amy's treatment has worked!!!!!!!!She does a sort of muscle release, she also works on the sacroiliac joints and ligaments and realigns my pelvis.I also now wear a heel lift on the left side and will have a cat scan soon to check leg length.
My pelvis will sometimes go back to the original rotation if I overdo things[Im hypermobile] and the pain comes back full force.For example, I danced at my daughters school formal in high heels for 2 hours and the pain came back, I had to get 2 treatments from Amy to get me back in order.No ammount of internal pelvic floor physio would have helped me.All my problem is mechanical/functional/structural and involves my bony pelvis .Pelvic floor physios I saw only deal with the muscles and didnt seem to have a clue about anything else.I am so glad I said no to cortisone trigger point injections and nerve blocks.Amy has advised me not to do any stretches at this point, as it seems to stir things up too uch.I dont know if I will ever be 100% cured, but am so grateful to have come this far.I think maybe once the nerve is stirred up, it is always touchy.I still dont sit without a cushion, dont bend, squat or walk up hills and I still can have flare ups, but I also have days and even weeks with minimal pain.I hope this info helps someone.

[mirandamolly]

Im adding this post to the last one, as for some reason I wasnt able to type anymore.I just wanted to add that everyone is different and unique with this bloody awful condition.No one professional we see has all the answers.This is a newly recognised condition and the experts too are learning.To any newbies reading, my advice is to stay strong, be brave, keep as calm as possible....and then research and get your own information.Methodically try various approaches until u find something that helps.Make your own mind up about treatments.
I have a friend here in Sydney who also has PN, and unfortunately Amy has not been able to fully help her, so my friend is now pursuing internal pelvic floor physio.My friend is very much helped by muscle stretches, but they make me worse.Im adding this to show how we are all different.
I do think it worthwhile to explore the possibility of a structural/mechanical problem though.There is no doubt that in some cases at least, these issues are the key to treating PN.
Although Ive never met any of you, I think of you all often and send you all my love and prayers for healing.
Happy New Year to you all and I hope 2012 brings you all inner peace and healing,
Mirandamolly from Sydney x

[Jackson]

Hi, Mirandamolly,

Well that's fantastic news. I'm particularly interested that you had to proceed beyond the initial Pt and botox approach and found relief from the osteopath at WHRI in Sydney.

I wrote a long 'woe is me' reply to your post but fortunately it disappeared off the screen into the outer realms of the universe (or wherever these things go-maybe there's a cemetery for lost emails )

Yeah, well that's just great. I guess the moral of the story is to start at the start and keep going back until something turns up. But for me i'm vary wary of surgical and injected drug interventions. It's good that they have those other practitioners at the WHRIA. I won't continue because what I've been typing could depress other members. I've deleted it. But it's great to hear that someone has improved -and by osteopathy at that! I guess it would be great to be living in Sydney close to these facilities.

Cheers and good luck.

[catherine a]

Miranda Molly, it's good to hear the news of your improvement. Just wish we could see more PN aware doctors around Aust. & NZ. It's so very important to have the multidisciplinary team work together on this. It does make such a huge difference to a persons treatment plan. I might even take a visit to Amy myself one of these days.

My PN pain is very minimal nowadays but I do have lots of myalgia type pain in my pelvis. A visit to Amy might just be good for me. Better to see and osteopath who knows all about PNE. Do you know if a patient can see Amy and not the others?

Keep up the good work Mirandmollly. Like you said, everyone is different. The pain is the same but each of us has a different cause. All the best and thanks for sharing your good news.

Catherine

[mirandamolly]

Hi Catherine,
Sorry about not replying sooner, I dont check the forum that often.
I do think a consultation with Amy could shed some light on your pelvic myalgia pain.At least in Australia, I think Amy is among the best we have, especially with reagrd to the whole musco skeletal system and PN.
Yes, u can see her individually and dont have to go through Prof V first.Amy has consulting rooms in the city [Womens Health Institute with Prof V], Balmain and Five Dock.
I know she is in great demand and is not taking any new patients at Five Dock.I think she will see PN patients at the city clinic, particularly if youve seen Prof V before.I can give u her phone numbers if u need them.
I am trying to work out which of my pain is the nerve, and which is muscle related.I assume the nerve pain is burning, crushed glass soreness and searing whereas muscle pain is more aching.What do you think?
I at present have a bit of a flare of nerve[?] pain, crushed glass soreness/searing on and off in and around upper vagina up in pelvis.Just keep reminding myself I cant complain, as I can have good days and even weeks now, but the PN monster still lurks in my pelvis just waiting to awaken.Maybe 80% improved was being too optimistic, 70% is more accurate, but even that is cause for gratitude.
Best wishes to you,
Mirandamolly