Newbie from UK

[jennyp]

Hi Faith,
Thanks for your message, I have always had my pain blocks and neuromodulation bi-laterally as my symptoms were never confined to one side or worse on one side vs the other. I got some relief from the PN blocks, first one I had improvement for 3 weeks, second one for about 6 weeks and the third one I didn't get any benefit from. My pain / symptoms were intermitant approx 3 weeks out of 4 but I knew PN was my problem straight away after the injections. I was a bit nervous about having neuromodulation as like you I'm always a bit scared of making things worse. The neuromodulation has a much stronger effect, so my symptoms got worse initially for approx 2-3 weeks (the steroid they put in at the time reduces this a lot) but then I get a much greater improvement in my symptoms than ever I got from the steroid injections. The first one lasted 6 months and as long as I don't do anything too silly I can do all the "normal" things. I'm doing 40min sessions at the gym without any nasty side effects and I only get a small amount of pain during my period which is easily manageable and I'm pain free the rest of the time. I can go to the toilet without ending up in agony too which is a bonus !
best regards
Jenny

[scaredgal]

Hi Jenny,

Can you clarify - did you get neuromodulation or pulsed radio frequency?

Thanks!
Katherine

[Robyn]

Welcome JennyP,

Glad you find this site. You won't ever feel alone again, thinking you are the only person dealing with all the multiple layers of PNE pain.

I too had PRF on Jan. 21st, but I got NO RELIEF at all. I was/am very comfortable with the Dr who performed it. I have a follow-up appt with him next week. I don't think he will be willing to try it again since I got no relief at all. He has said he'd also like to try a Impar Ganglion Block, then a Spinal Stimulator. I am not too keen on either of those options.

Even though our PN pain timeline is about the same..............you at 8 years and me at 7.5 years, it sounds like our PN pain is quite differant. I can not sit down at all without burning in the lower half of the buttocks, peri, rectum, groin and major labia. If I stand for too long, my sacrum will start screaming due to the many muscles that have been effected by this one little nerve.

I wish you continued sucess and hope you find many answers to your PN questions on this website, thanks to the tireless efforts of the volunteer mods (Thanks a Bunch Mods )

Robyn
P.S. Your explanation of PRF was excellent

[johnd.h]

Hi all, and thanks JennyP for posting. Kath (off this site) directed me to your post as I am due to have the Pulsed Radiofrequency Lesioning on Tuesday 22nd February with Dr. Baranowski. I have had two lots of Nerve Blocks (bilateral) but with no discernable pain relief, and so this suggestion for PRL came out of the blue when I visited Dr.B. earlier this week. I am encouraged to hear that you have had a good result from this Jenny, I hope I can be as lucky. I'll keep everyone posted as this seems to be a relatively uncommon treatment for PN, I'd be delighted to share some good news with you all, and maybe give hope to some that it may be beneficial for them.

Thanks Kath for the link to JennyP's post.

John

[jennyp]

Hi John
Sounds like you are in a very similar position to where I was a year ago. I had some minimal improvement from my first 2 nerve blocks (none from the 3rd) that at least convinced me and Dr Baranowski that my problems were PN related. He suggested PRF to me and to be honest I didn't really know what I was letting myself in for, but for me it had been the best choice I have ever made. He was the first doctor I had seen who seemed to know what was causing all of my problems so I just trusted him regarding his suggestions. I really hope everything goes well for you next week and if you have any questions / need any advice drop me a message. My only bit of advice would be I had quite a bit of flare up in my symptoms but I'm now convinced that is a good sign and suggests the exact spot has been hit and the nerve has had a good blast !!! The steroid dulls this down but I got quite scared the first time that I might have some sort of nerve damage but it all settled within 2-3 weeks. The last time I only got a bit of flare for a couple of days 2 weeks after which I think was the point the steroid wore off. It's been nearly 3 months since my last PRF and I'm blissed out in pain-free loveliness at present !!! I think Dr Baranowski has had some patients (not sure they are pelvic) who have improvements for up to a year with PRF. I got a very good 6 months first time. It's not a miracle cure, I still have some issues with bowel control and feeling I need to urinate frequently but the PRF has dealt with the pain amazing well which was the thing that was dragging me down. The only downside with repeating PRF is the xray exposure because other than this I would quite happy go through this twice a year to feel so well. We are supposed to be discussing longer term options next time we have a chat but I'm hoping this will be a long way off yet.
All the best for next week John
Jenny

[manon13]

Hi, does anyone knows what sort of physio is prescribed if any?
Also some news Stephanie Prendergast will be in London in July to do a training seminar for physiotherapists...Something really missing here at the moment

[jennyp]

Hi Manon,
I asked Dr baranowski about physio fairly soon after my set of steroid nerve blocks mainly because I wanted to get back to doing some more exercise without causing myself more problems / pain. He referred me to one of the NHS physio's within the pain management centre at the NHNN Queen's Sq who I saw privately so got in quite quick. I had to pay myself as she doesn't see enough patients to register with the insurance providers. She gave me lots of stretching exercises to build up all of the muscles along my spine as well as a few pelvic relaxation ones. I did them everyday at the start and now just use them before I go to the gym. They certainly made a difference to my spine / ab area !!! She also wrote down a program for me so I could do "pacing" to get back to doing some more exercise without causing additional pain. She doesn't do any "hands on" work but I found the advice and info really helpful and it gave me a lot more confidence about what I was doing as she knew about PN. Sorry it is a while ago and I can't remember her name !!!
Jenny

[Myra]

I am a newbie as well, from West Virginia, USA. After 19 months of suffering, I couldn't believe my eyes when I stumbled across this site yesterday. It was a particularly painful day and I decided to try to research for possible answers. This is the first I've ever heard of PN or PNE and now I can't wait to talk to my doctor about it. It all started with a complete LAVH in June 2009 and has gotten progressively worse since then. I've seen 3 gynecologists, a urologist and finally a urogynecologist at Cleveland Clinic. I've endured MANY diagnostic procedures, none of which have been successful or even helpful. As you all know, it has been a painful 19 months, but when I read the posts and see that some of you have suffered for years and years, it actually makes me feel blessed to be in my own shoes. I actually cried when I started reading this information yesterday. FINALLY, an answer (I think). I do have one question... Have any of you heard anything about Dr. Richard Marvel in Towson, Maryland? He is the closest PN specialist to me and I was thinking of calling him for an appointment. Please let me know what your thoughts are.