Health Organization for Pudendal Education

I am new to the forum. Had surgery for ovarian cancer and now PN. I will see Dr. Conway soon, but now, my PCP is managing my pain, but not very well. Will Dr. Conway refer me to a pain specialist? I've got to say that the PN pain is worse than the pain from cancer. I never even heard of PN before and certainly never knew it was so painful! Any suggestions would be helpful. Right now, I take oxycodone, but it only takes a very slight edge off. Thanks! Sarah

Sarah,
The FAQs off the homepage have info on medicines. I found Tramadol helps with pain flares and some others for continual pain are neurontin/gabapentin, amitriptiline, lyrica and cymbalta.
Janet

Thanks, Janet. I tried all of the ones you mentioned, except for the lyrica and Tramadol, and I could not tolerate them. I tend not to get flares, but have constant pain that worsens as the day progresses. I work full time, have a stand up desk and cushions for when I do sit. And ice. Lots of ice. Walking helps, but the weather in New England has been just awful. I will review the FAQs. Many thanks!

SarahL wrote: Will Dr. Conway refer me to a pain specialist?

Sorry you have been through so much, Sarah. Your GP should be able to refer you to a pain management doc. I can't say for sure but if you live local to where Dr. Conway practices my guess is that he could probably refer you but if you are out of state he might not know who to refer you.

Violet

Sarah--

If at all possible, avoid taking opioids long term. You will regret it. I do. It's a deal with the devil.

Chris

Sarah,

I took low dose morphine er for years with Percocet for breakthrough pain and it really helped me. I had to be able to function for my family and these drugs were more helpful with less side effects for me than Lyrica and other common PN drugs. Coming off the long acting drugs is physically difficult so I definitely recommend a doctor's help with that.

Stephanies

I took high dose OxyContin and then morphine for years. I have tried to wean off it but when I get down to a low enough dose the withdrawal becomes unmanageable. Low dose is one thing. High dose 24/7 is something else.

Don't do it.

I agree GraceofGod, weaning off the last bit is more than awful. I did it under my doctor's supervision/directions, but if I do it again, I will ask to do it in a hospital setting or with some other kind of help. For me, the withdrawal was worth the years of benefits I believe I received from the decrease in pain and the ability to do things for and with my family.

My best to you,
Stephanies

I have been on oxycodone and lyrica for the last six years. While I am not crazy about some of the side effects such as some sedation and negative effect on my sex life overall I have been grateful for the fact that it has allowed me to enjoy life. I can take cross-country airplane flights , go out to dinner etc. I hold down a full-time job. Sometimes I will forget that I have this problem and I could not do that without the meds. I have found a new favorite cushion, the wonder gel cushion. Just Google it. It's a little on the heavy side but I have found a shoulder bag that allows me to take it with me. You have to take your life one day at a time and find out what works for you and be grateful if something helps. I know that withdrawal would be a nasty business but I have to concentrate on enjoying my life now.

I have been with Dr. Conway since 2010 and had both TIA(2010) and trans-gluteal(2012).

I also see Dr. Dainesi at:
http://elliothospital.org/website/painm ... .php#Staff

He was referred to me by Dr. Conway.

I have had at least 6 nerve blocks with him, he is "nice" but a little terse. But he makes up for that in being VERY good with nerve blocks, he is fast, <5min for the lidocane and the actual shot, and has hit the nerve every time for me.

I have had a good response with the team there, the nurses and PA tend to call me back quickly usually in the same day.

From my experience, take their opiate contract seriously.
They do not give opiates lightly but they will do it if you are honest with them.
If you have problems managing pain let them know.
If the pain is unbearable state it clearly, they are compassionate and most understand pudendal pain.

I have found that telling them, "My pain is totally incapacitating on a daily basis in the afternoon and I need to take a extra pain med. I am contacting you to ask for advice in how to mange this with the pain management contract" works well.

They have increased my pain meds when needed.

I hope this helps.