Health Organization for Pudendal Education

thanks for that Calluna,
to be honest it's the hyperarousal part thats really bothering me the most, i just want it gone,this symptom has only started a couple of months ago and at first put it down to hormones (which i'm sure others have too) it's only when i started looking this up that it lead me to here,so i was quite shocked that it's being linked to all my other problems that i've been suffering wiv for the last 3 years, the same with my bladder problems (which i've never been to the dr about as i thought i just had a weak bladder) so i'm still in shock that they could all be connected.
i guess i need to go to the doc and ask for tramadol to see if it helps this, i take 20 mg of amitriptyline at night it does help the pain and the painkillers do too, i would be in loads more pain without them. but i do remember reading something about not taking tramadol and antidepressants together as it can be bad,and i already take 2 types of antidepressants together, how did they make you feel when you took them together?,i'm a single mum to an 8 years old girl so have to be careful not to be too drugged up, but i would be willing to try anything at this stage.i have asked about c.b.t twice since having this hyperarousal thing, but they both said nothing about it and just gave me more a.d's!!
£400 is quite alot of money but i'd pay anything right now to stop this suffering and find an answer so i really don't mind paying to see him as long as the treatment is done on the n.h.s as i really don't have that sort of money (god i wish we did all our problems would be solved then).
thanks for your kind advice on everything, it's been absolute madness to find this all out and find so many people suffering the same as me, it's so lovely to finally not feel alone or embarrassed with this all, as i've not even told my closest friends some of the more embarrassing symptoms, they just know about the lower back,hip,pelvic and leg pain,but i tell my mum everything and she's been great but it's nice to hear from others that fully understand.
thanks everyone xxx

As mentioned earlier the cost of Dr Baranowski's private consult was second hand info and infact was more than £400 but I didn't want to quote the cost as it could be very wrong.
It will be good to have a first hand account of the cost for him. Maybe Mandy can let us know if/when she she rings his secretary? ?
It must be quite frustrating finding out all this information on a bank holiday weekend and then not being able to act on it straight away Mandy.
You mentioned that you are hypermobile too which is part of an interesting discussion on a piriformis thread on another forum (a running one! as if I could RUN anywhere )
We have discovered that we are nearly all hypermobile, some more so than others. Dr Greenslades report read that my forward flexation was 'alarmingly good' but I would say that I am only moderately hypermobile.
Dr G also said that hypermobile individuals are more prone to pain, something I could not relate to at all however.
I would definitely put that on your list tho' Mandy especially the hip bit.
Let us know how you get on.
Take care,
Helen

I paid £425 to Dr Baranowski for 1 hour appointment last November. He also suggested xray guided nerve blocks which were not cheap either. I think he is a good doctor but too expensive. A ct guided nerve block in France is much cheaper than in the UK, it is round about 150 euros at dr Bautrant cllinic.

Dr. Bautrant in France is a great doc if you need someone...
the GP's don't know anything so no point wasting time with them. You have to do the research and find the specialists who are best for you.
Glad you found our site. Sorry about the prob. We are w/ya in this!

Hi Mandy,
Welcome to pudendal hope just wanted to pass on some of my experience and advice. I was mis-diagnosed with endo for 7 years with chronic pelvic pain, bladder and bowel control issues. Things reached a head for me and the pain got me so down I was very close to needing anti-depressants. My GP was hopeless and wouldn't prescribe me even a decent level of pain relief. My employer was fantastic and got me some CBT who also arranged for me to see a new gynae who referred me to Dr Baranowski. I have been seeing him for 2 years now and my life has been completely transformed. I got most of my costs covered by my insurer (expect the excess) but if I were in your shoes and you have the cash I would get an initial consultation with him get reviewed / diagnosed and then the information will go back to your GP. If they are anything like my GP, they will then take you more seriously and hopefully you will get on a better treatment programme. I'm sure if you explained about finances you could get onto his NHS list at the NHNN in London but the waits are longer. His private secretary Nadene is a real star and has always been really helpful, even dealing with BUPA for me. I think my intial consultant was about 1hr and cost £425 and I got in within 3 weeks. I explained all of my symptoms / problems, had full examination lots of bending over touching my toes, checking my spine, also checking how my hips worked, bending legs in various directions and internal exam checking pelvic floor muscles and for pain. I had 2 xray guided nerve blocks early on to confirm it was pudendal problems. Since then I had 2 pulse neurofrequency modulation treatments (fancy nerve injections!!!) and between each I've had virtually no pain for 6 months. Had my last one in Dec and only need codeine for "time of the month" !! If you have any questions drop me a message and will try my best to help. Wishing you all the best Jenny

jennyp wrote: I had 2 xray guided nerve blocks early on to confirm it was pudendal problems. Since then I had 2 pulse neurofrequency modulation treatments (fancy nerve injections!!!) and between each I've had virtually no pain for 6 months. Had my last one in Dec and only need codeine for "time of the month" !!

Jenny,

I would say this qualifies as a "success story" to be put under the topic headline of the same name! So glad to hear about a successful treatment other than surgery. Have you already posted the details of your treatment somewhere on this forum?

I hope that you continue to do well.

Hi there,
I like to think of it as a small success as I don't want to jinx my improvements !!! I have posted some info in the welcome centre forum. It is a pain management technique and does wear off eventually so I don't want to paint it as a long term cure. I'm happy to share my experiences though.
jenny

just to let everyone know, incase they ever need to do the same,i made an appointment to see dr baranowski at the end of june, it will cost £425.00 but i can be moved to his n.h.s waiting list if he thinks this is what i do indeed have,so i'll just have to go from there.
i've just seen a different g.p today one that i've never seen before and when i told her everything that has happening in the last 3 years she said it sounds like the pudendal nerve playing up...(my god wished i'd seen her b4 lol), she is going to send dr.b a letter of all my symptoms (as his secretary said he does still like to have a g.p letter even if you are paying for the consultation yourself).
she has also given me some gabapentin as a few people have told me it's good for the hyperarousal thing, so hopefully it will calm that side of things down...fingers crossed, i just want to thank everyone who has helped me and given me advice, it has given me some hope that i may not need to suffer quite so badly for the rest of my life with this and that there maybe other ways to calm the symptoms down, so that living is a bit more comfortable in the future.
i hope this threat and all the others on here will help us newcomers understand whats going on and what to do about it,as it has helped me loads so i want to
thank everyone so so much mandy xx

Just very glad that you are getting some help now and that you have found a good GP too. I have to see mine on Friday morning and am not looking forward to it. You never know she may actually be helpful this time.
Keep us informed how you get on Mandy.
Take care
Helen

i know how u feel about not looking forward to the g.p visit , i was sure she was going to have a go at me about looking things up on the net i was so nervous, so good luck with it all,let me know how you get on,fingers crossed for you if not maybe try a different dr if poss,this new dr i saw told me burning and throbbing pain is normally due to nerve problems and she couldn't understand why no one else had picked up on it b4 after having so many clean tests and scans results.
i will keep you posted, i'm hoping the new pills she gave me will help the hyperarousal thing,riding a bus to college for an hour twice a week is a nightmare at the mo it makes it really bad for hours after, so i really hope theses pills will calm it down in time, if not i will ask to try tramadol.
hope everyone is ok and everyone gets the help they need in time.
p.s has anyone thought about going to a magazine with this? to tell of their struggle to get diagnosed, it would make a great story and get a bit more awareness out there, although i will admit even if i do get diagnosed with this, i'd feel i would be too embarrassed to tell the world my symptoms but they maybe a brave one amongst us that could put the word out, just a thought.xxx