Anonymous,
I am sorry to hear you and your wife have been struggling with this for a decade. I'm happy to answer questions about the surgery. Dr. A did mine the way he did because he thinks that entry point (through the buttocks) provides the most unobstructed view of the nerves in question.
The surgery was 18 months ago, and while what I call my "background pain" (the constant pain that is livable, I guess, with pain meds) remains mostly unchanged, the horrible, make-me-holler-and-lose-my-balance, sharp electrical-type pains have reduced from multiple times a day to once or twice a week. That's a big deal, but not nearly enough. I am still at a 6 or 7 on a pain scale where 10 is "kill me now" on the oxycontin and oxycodone and a 9 without it. Unacceptable.
At my med appointment today, my NP asked me to think about the Medtronic implantable neurostimilator. He said what we're doing now isn't good enough, and that it's making him tired to watch me. (I like him, he's funny.) I'll try to write more about this soon...have videos from the clinic to watch about it.
I'm sorry I didn't respond earlier. I have ambivalent feelings about blogging (see my comment to Pearl on the last post). My husband said to me tonight that I should read my blog - people are talking to me. Hi, People. I am glad to find you here. Or, rather, I wish none of you knew to look for blogs about this, but given that you do, I am glad you are here.
Kate
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9 comments:
Kate,
I recently installed a statcounter on my blog to see what led people there. We have a lot of silent readers and searchers who are looking for information on pudendal nerve problems. I remember you said one time that you tend to post and run because it's so raw. I understand. Just the fact that you publicize your experience and thoughts is helpful for someone looking. Just knowing that I'm not alone in this is immensely helpful.
-P
Kate,
Thank you very much for sharing your experience. It is sites like yours that have helped my wife and I find out way to where we are today.
At this point I'm rather convinced that Dr A may have been off on his diagnosis, at least that is our hopes. The shots never really did anything for my wife and we were lost as to what to do next as she really wasn't a good candidate for the surgery.
That is when we found out about Dr G out in DC. While it was a long shot we booked the flights and went to see him. It is now 4 months after the first visit and areas that were on the 8-10 range of the pain scale are now down to the 4 range. Turns out that is was an atrophy issue caused by birth control, and some estrogen cream is making a huge difference. We are far from out of the woods but we have hope again so to those of you who spend the time to create and maintain sites like these, please be aware of all the people out there that you are helping.
These issues are huge, most Dr's have no clue, and these sites are one of the few places people can go to know they are not alone and search for ideas and the one or two doctors out there that can help treat this life altering condition.
Thank you again!!!!
Kate...never doubt that your blog is helpful to people like myself who fell so alone with their pain. My wonderful husband and children support me and love me but they can't begin to understand the absolute exhaustion that I live with just from dealing with the daily pain. I am so grateful each and every time I find another person that understands and is willing to share their story. It gives me comfort to know I am not alone and not going crazy. Thank you for blogging.
Hope
Dear Husband,
And chance you'll share name & contact information for the doctor in DC? If not publicly, than by email?
Kate
Kate,
I would be more than glad to share, anything that helps anyone dealing with these issues needs to be made public. Dr. Andrew Goldstein, or Dr. G as you will see him mentioned on many of the blogs out there. You can find all his contact info here http://www.cvvd.org/home Also another blog of a someone who suffers what I now believe to be the same issue that my wife has that tells everything about what to expect the first visit and the step by step that she is going through. http://downtherevaginalpain.blogspot.com/?zx=adec2ace04854892
You will notice that your blog is one of the links on her site.
And by all means if you have any questions let me know, I'm more than glad to share what we have been dealing with for the last 10 years and what is now starting to work. I check your blog at minimum a few times a week.
Good Luck,
Husband
Husband,
Thank you for the information. I am looking at the website now, and printing out the Vulvar Pain Questionnaire. It's time to start looking into an alternative approach. Maybe the neurostimulator is the right way for me to go, but I want to know what other possibilities there are before I have surgery again.
Kate,
I'm in your boat there. My wife and I were at a loss. We thought Dr. A had finally found the reason we had been struggling with this for 10 years. When we went through all the rounds of shots and self care items for over a year and a half and were still at the same pain level and he said she wasn't a good candidate for surgery, we didn't know what to do next. Then we found the new doc, Dr. G and as I said we have seen more progress in the last 4 months than we have in the last 10 years combined. We still have a long way to go, but the journey seems that much easier when you see there is some progress.
I wish you the best of luck, and if you are anything like us, what is one more Dr and a painful exam, in the grand scheme of things, if there is even a chance that it will help?
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