Health Organization for Pudendal Education

Hi fellow aussies.
I have just spent 4 hours on this site looking for answers. And although I have found some things that may help, overall I fell an overwhelming sense of doom. I am taking 20mg endep n now taking tramadol for arousel. This is why I'm wide awake at 430am! The trend I see on this site is that although some people had found medications n surgery, a few months later they were back on the site saying how symptoms were worse n they had to increase there meds. N the unlucky ones that couldn't take any more meds were left with just getting through days with pain. So my massive fear is that I'm 29 and in a few years Il b like everyone else here......worse off! Surgery is now last option and even then it seems that it works for a small group, and symptoms can even return. Geez this is the most terrified I've ever been. I think about suicide now as I don't have the strength to live a life full of this.
I don't even know what caused this. If I guessed it would be a bad dose of constipation for 3 months due to ceoliac disease. I had bad stabbing/stingy pain in vagina,pulsing clitoris,raw feeling in vagina,tingle felling in vagina and feet. Muscle spasms in left side of vagina.frequently peeing also. Endep has helped with pain but what I'm left with is mild itchy feeling on and off in vagina, tingling in feet and vagina, and the worst is spontaneous pulses of clitoris that brings on unwanted arousel. Tramadol has helped twice with that but side effects are sweating,insomnia ringing in ears. Who's to say all of these won't get worse n then the journey of upping the drugs till they no longer work begins.
I'm finding it all too much to deal with and just feel like I'm mourning the loss of my life. And so I go on and continue with doctors appointments and start physio with the hope I can stop this in its tracks
Thanks for listening, Il try and get some sleep now
Kate

I hope that you do wake feeling a bit more rested and less doom laden. Remember that there are a lot of things that can help. with medication it's an experiment that sometime can take a bit of time to find the one(s) that work best for you. Sometimes all of the info can just seem overwhelming especially at first, at the same time I am often overwhelmed by new stuff that comes along every now and again. . . just when you think you have it covered, but it's great that medics are working on our behalf to get further with these problems. There seems to be a new development every once in a while, which is fantastic!
I would try and concentrate on things that may help you, ice, Instant help, warm baths (works for me anyway) medication,, physio and lots more and not look too far into the future. The conservative treatments should be tried and because your problem has developed without a 'trauma' or so it would seem, there is every opportunity that medical intervention, treatment may calm any muscle spasm/pain cycle down until manageable or it disappears.
I also hope that the help on here will give you more hope for the future.
Take care,
Helen

Something to remember is that a lot of the people posting here are still looking for answers. There are people who have been helped by more conservative measures; and they're not around anymore. Or, those that have been helped a lot by surgery are off living their lives.

Hang in there.

Kate
Just read your post and want to give you hope- there is help out there!
Depending on the state you live in (?), you can ask your GP to send you to a gynae who can investigate the cause, and get a referral for a womens health physio (do research/ring and ask if they have experience with PNE) and also see a pain specialist re: pain meds (start the ball rolling now as pain clinics in public hosp can have a long waiting list, or if you can, go private)
Want to let you know that there are a few of us who have had the surgery with Prof Vancaillie in sydney, are vastly improved, and yes, we are out there living our lives, but do pop back every now and then to give support to others. I had the surgery 3yrs ago and now 70% better. I'm in WA but had to travel to get the help I needed, but now helping Catherine A to educate drs that it is not 'rare', more likely just 'under diagnosed'. I am aware that surgery is now used as a last resort, but the other methods have shown to help immensely, so if you can get diagnosed, there are options to help you!
good luck
cheers Ness

Hi Kate, I am new to this site as well and totally understand the feelings of hopelessness you have mentioned. I hope that you have read my posts about the Womens Hospital, I'm not cured yet but they have told me that THEY won't give up on finding the answer for me and those words were the best words I have ever heard. I decided that day that I wouldn't give up on me either !!! If you need any further information about the team there please let me know and I will give you details ... I don't think you will have to wait long at all to get an appointment and the more people like us that they have the more they can learn and eventually stop this 'ridiculous' complaint forever. By the way, your description of your symptoms is EXACTLY the same as mine.
Have hope and believe that it will be over one day and we will smile again,
Marg

Hi Kate,

Like Ness and Marg have said, there is help out there for you to have this resolved. The answer is in getting to the right health care providers. There are a number of us from both Australia and New Zealand who did improve tremendously from having being treated at the PN. clinic in Randwick. Hang in there Kate. Have you heard back from either clinic as yet? Randwick or Melbourne?

Keep in touch and don't ever give up hope. We all know exactly what you're going through. It looks like there's no light at the end of the tunnel, but there is Kate. It will take time though. It took us years to sort this out but you have the advantage of the doctors now understanding what this is all about. We didn't have that 5 or 6 years ago. We were the ones teaching the docs. Fortunately Prof. Vancaillie and Sherin have the dedication to learn more. The pain will improve with the correct treatment. Let us know how you're going. Even if you can have the initial consultation in NSW it will get the ball rolling. The Royal Hospital in Melbourne will surely collaborate with Prof. Vancaillie. Don't stress either. It only makes you worse. All the best.

Catherine (Perth)