Health Organization for Pudendal Education

Just wanted to introduce myself and pass on my experiences and hopefully get some advice. I started to have problems 8 years ago (aged 25) with painful rectal muscles spasms after BM, sexual acitivy and exercise. On a couple of occasions they pain was so intense I passed out and I never found anything that relieved the pain. I had general bad pelvic pain 70% of the time with really awful period pain and bleeding between periods. I also had problems with bowel control / urgency. I think all my problems started after I fell really heavily on the base of my spine whilst snowboarding. I was misdiagnosed with IBS/ endometriosis even though a lap showed nothing and none of the hormonal treatments I was put on helped. I finally reached the end of my tether about 18months ago when I realised i was merely "existing" struggling on at work and having very little social life and no hope of a realtionship. After much help from my employer via CBT and private medical insurance I got referred to Dr Baranowski in London was finally diagnosed with PN issues. It was amazing to finally get some answers. I had three steroid blocks in Dec 09, Jan 10 and March 10 which helped considerably if not for long. I also got some physio help so I could restart some exercise and also I've been for Biofeedback (expense but worth it!) to rebuild some of my pelvic muscles to regain better bowel control. These exercises aren't easy as they are near the nerve but I'm doing the best I can and it has helped. I had my first pulsed radiofrequency neuromodulation in May and a second blast very recently in Dec. These caused bigger flares than the steroid blocks initially but have enabled me to be virtually pain free for six months (first one) which has been amazing. Most of the rest of my symptoms have also disappeared. Has anyone else benefitted from this technique ??? Not sure Dr Baranowski is going to let me have more as obviously x-raying my pelvis each time isn't doing my eggs a lot of good but I'm far more bothered about quality of life at present. Life isn't easy but I feel I'm in a far better place now and I have a much better understanding of what triggers my problems now. I feel there is a big hole in my life as I would love to be in a relationship with someone but even the thought of trying to explain my condition to anyone fills me with dread. I'm not sure I'll ever find anyone understanding enough. Ideally it would be another PN suffer as at least we would understand each other I haven't told anyone in my family about my condition and only 2 very close friends know. Thanks for all the advice and support on here, it's a comfort to know you are not alone with this condition and it makes me feel a bit more "normal"

You could also consult with the Bristol PN team ans seek their opinion. They trained with Prof.Robert in Nantes. They perform surgery available on the NHS.
http://www.pudendalhope.info/forum/view ... f=27&t=584

Jenny,

Thanks for sharing your story and welcome to HOPE. I "hope" (LOL) you find lots of friends/support on here.

I am definitely glad to hear you are doing okay and very interested in hearing more about pulsed radio frequency.

Best,

A's Mommy

Dear A's mommy,
glad to share my experience of pulsed radiofrequency neuromodulation. I had it done privately in the UK by Dr Baranowski in London who is a pain management consultant with specialist interest in pelvic pain. The procedure itself (from my end!) was not much different to having a steroid nerve block. I'm always heavily sedated so don't remember / feel anything. He uses X-ray guidance / nerve locator device to insert the needle next to the nerve then passes a small electrode down to apply the radiofrequency "current". Steriod and local anaethetic is injected at the same time. My understanding is that the "Current literature suggests that PRF delivers an electromagnetic field, which modifies neuro-cellular function with minimal cellular destruction". This "stuns" the nerve (the term the Dr likes to use) and gradually over time the nerve "recovers" and returns back to it's previous state. I think this technology is reasonably new but has been used on other nerves / locations. The only publication I can find about it's use in PN is from the year 2009 (see link below). I got a bigger flare up after this treatment compared to the previous steroid blocks but the steroid injected at the same time dampens this down. I managed a good 6 months improvement after my first treatment. I think the consultant suggested each PRF can last up to a year, but the younger you the quicker ther nerve tends to "recover". My symptoms at the start I know aren't as bad as some on the forum, I can tolerate a reasonable amount of sitting, but I've been really impressed with the benefit I had from this treatment and for me it has enabled me to do a lot of things without pain . I'm not taking any pain medication at present. I'm not sure how widely this treatment has been used in the PN field I haven't found many others mentioning they've had it. I think the PRF can be repeated (I've just had my second) but the only downside is the X-ray exposure etc.
I'm happy to provide any other info if anyone is interested.
Jenny
http://www.painphysicianjournal.com/lin ... 2&page=633

I'm from the uk too, and I'm 27 so I understand how annoying it is to be struck down with this when you've got so many plans ahead! I've just been diagnosed based upon clinical symptoms but the next step is nerve blocks and mrn. I'm glad for you that you have achieved pain relief without surgery, and dr baranowski has a tremedous reputation. I've decided with the Bristol team for now we'll see how things go! I also understand that it is difficult to embark on a relationship with this condition as I have to put this part of my life on hold, which is a damn shame ! Lol
I would be interested to know more about your progress and situation.

Spike

Hi Jenny - another one here from the UK, there are quite a few of us on here.

Thankyou for posting about the rf neuromodulation - 6 months improvement from a single procedure certainly sounds interesting! I have had PN for a bit more than 18 months now, damage during surgery was the starting point for me. I am asking for referral to the Bristol team, makes sense as I am in Wiltshire. With this condition I believe it really helps to be an informed patient so all new information is good.

Anyway, much appreciated! Management rather than cure is a sensible direction, I think, and it sounds as if you have got an excellent management programme going already, I hope that things continue to improve for you.

Thanks for the replies, Spikehades I sent you a private message

Hi Jennyp,
People often dissapear from forums when they are having successful treatment, I don't blame them, they are getting on with thier lives at last. So a belated but warm welcome for taking the time to tell your story and give us the gen on newer treatments available here.
I often feel a bit left out and the poor relation when discussing the derth of medical pelvic awareness in the UK with all the clued up Americans. Is that just me?
Like many, it took you AGES to get a correct diagnosis, same here (my epitaph should read 'It's NOT my back !).
In my case it was simply because I wouldn't give up, I want some positive help not just drugs to mask the condition. I know there are others who will be fobbed off and when in pain the last thing needed is a fight to be understood. So well done, I hope this is the beginning of very good things for you.
I'm off to Bristol tomorrow for my 1st bi-lateral piriformis botox Yippee ! !
Take care
Helen

Hi there,
I have been struggling with PN pain for over 2 yrs now. Treatments that help temporarily, and many ups and downs as far as how I feel. I just wanted to write to tell you that I understand your relationship fears. I have them as well. I do think there are some very understanding men that would not be frightened away because of PN. In the last couple of years I have also learned that there are many people struggling with some kind of medical condition. It amazes me just how many people there are that have a medical condition that has an impact on how they live their life. Many of these people, I would never know unless they told me. We are not alone that is for sure. All the folks on this site can offer support and understanding. I don't know the relationships you have within your family, but if you are close with your family, my advice would be to tell them what is going on. My family has been such a huge help to me and offered so much support. Any loving member of your family would want to know so they can offer you help and support. It is scary and those the closest to us can help us get through. Maybe just consider it.
Thanks for sharing your story. I hope you are well.
Gracie

JennyP, +Thanks for sharing your experience with pulsed radiofrequency. Did you have it bilaterally or just one side? This article looks very interesting. My pain management doctor has mentioned this treatment, but I worry about getting worse. How long did your PN blocks relieve your pain for? I hope you are continuing to have pain relief!