Health Organization for Pudendal Education

Hi everyone
This is my first post. I have suffered chronic episodes of pelvic pain lasting 3 to 6 months
for the last 8 years. After a 2 year break, it came back in September of 2011.
I was trying to be more proactive about it this time, going to pelvic physical therapy etc.
and I was getting by more or less with painkillers, pillows and such.
But a few days ago I took a turn for the worse, my tailbone started hurting
and my life is miserable. I can't really sit (i am posting this in bed from my trusty iphone)
and i have trouble sleeping. i have a wife and two young boys depending on me
to be there for them, and I can't. I feel sad, lonely and depressed.
I am not sure when or if I will ever be able to return to my job.
I am seeking treatment, scheduling an
mri, looking into injections etc.
I guess I am just looking for a little encouragement.

Elliot

Hello Elliot,

I'm sorry for all that you are going through. This is a really tough disease to deal with and you have good reason to feel depressed and lonely. Does your job require a lot of sitting?

We're here to let you know you're not alone and you do have options. Lots of people get better with the right treatments although I think sometimes the people who are active on the forums are often here because they are still looking for answers. But I've known many people over the years who have gotten better so please keep fighting and hopefully you can find some good info on the forum/website that will help you figure out what to do next. First thing is you've got to be able to get some sleep because otherwise you won't have as much strength to fight this. What meds have you tried for sleep so far?

Regards,

Violet M

Welcome Elliot,
Sorry things seem tough for you right now but glad you found this site for help. The FAQs on the home page have a good set of steps to follow and Violet is one of the more knowledgable people on the forum to guide you. I am post surgery and able to return to a sitting job so there is hope. Best to you and just ask questions and surf the site when you can. We are here to give you support, you are not alone.
Janet

Thanks to both of you for your encouragement!
i've felt a lot better for the last few days,
but tonight i am back in a pit of pain
but
i will get better
i will get past this

edit:
Violet, to answer your question;
yes i have an office job in advertising lots of siiting
drugs i have tried
Elavil - makes me crazy, can't handle it
Ganapentin-on that now
tylenol/codeine-as needed thank god for it
xanax for anxiety
Lyrica- tried this in the past, my insurance wont cover it
a doctor i saw today recommended a new painkiller i think its
cymbalta maybe, ssri drug for pain.

Edog, hopefully you will find more answers and figure out what will help you as your continue to read this website and other resources. Cymbalta with lyrica seem to work well for some people. What dose of gabapentin are you on? It's similar to lyrica but you have to be on a pretty high dose for it to be effective for pain.

Keep your courage up.

Violet

Violet,

i am now up to 1500 mg per day spread out over 3 doses
definitely helping my pain.

i will have to fight Blue Cross to get Lyrica
Not sure about combining cymbalta with high dose
of gabapentin...would rather have Lyrica.

i am doing better, but still can't sit much
due to my tailbone pain, can't figure out if
that's a separate issue or a worsening of my
pudendal neuralgia- i hope i don't have coccydynia
And PNE. two very hard to treat conditions

Hi Elliot,
Welcome.
I took 2400 mgs of gabapentin per day (although not on it now) with cymbalta and it was effective, to an extent.
The gabapentin did make me very woolly headed and slightly uncoordinated especially at first. I did get to try lyrica, after a battle with my GP (British) I'd had a botox injection and was keen to see the full effects of it so came off gabapentin and had lousy withdrawl symptoms which lasted for 2 + months. I cited this as the reason for a request to try lyrica, because it was so extreme, but my GP would have non of it (I know it is really a cost issue of course)
The only way I got success was saying about the side effects of actually taking gabapentin. I got lyrica then (very begrudgingly) however it didn't suit me one bit after all the fuss I'd made. I'm saving the NHS a fortune
Take care,
Helen

I just started 20mg Cymbalta each day and am continuing 1500 mg of Gabapentin
haven't noticed the effects of the Cymbalta yet - i understand
it can take a week or two to kick in -

Elliot, I've heard you have to get up to at least 1800 mg of gabapentin for pain relief. Sounds like a lot but there are people who have been on much more. Good luck with cymbalta -- let us know how it goes.

Violet

i am putting in request with my gp to go up to 1800mg per day
from my current 1500mg. Will let u know how it goes.
i will say that the cymbalta is making me crash hard in the late afternoon