April 23, 2009

If I Ever Thought Neurontin Didn't Work...

I was wrong. I've had a very manageable pain level for the last week. I've been very careful at work and at the gym and it's paying off.

Yesterday was Administrative Appreciation Day. My bosses took me and the other admin staff to lunch. It was a long meal. By the time we got back I only had an hour to catch up on work before I had to head out to the salon.

In my haste, I completely forgot to take my mid-day dose of Neurontin. It occurred to me as I was walking to my car, but I didn't think it mattered. Trust me, it did.

My Brazilian bikini wax was so painful this time, I almost had to tell her to stop. Every place she spread the wax hurt and when she pulled the fabric strips off my skin, I thought I was going to go shooting off the table. I tried to use mind over matter and force myself to relax, but nothing could block out that pain. As she rubbed a strip over my right lip and the outer edge of my clit, I thought I was going to scream.

The pain and the anxiety of anticipating more pain made my head hurt. It took so much strength to keep my composure that by the time it was over I felt completely exhausted.

I'm still in pain today. The area feel extremely raw. Waxing is not for everyone, especially women with vulvodynia and pudendal neuralgia, but for me it's normally worth the pain. I know for next time to be sure I've taken my Neurontin well in advanced.

Frankly, it's good to know Neurontin is actually worth taking. I'm on quite a few meds and I'd like to start going off of them sooner rather than later. I know in a few years I'll have to stop all my prescriptions in order to have a safe pregnancy. Neurontin, I'll save for last.


Anonymous said...

I also have just started using
nuerontin along with my strong pain meds...does nuerontin stop you from having orgasm?
i have a strong sex drive and am visiting my fiance in 2 weeks.
please let me know, because, that is an issue.
Thank you so very much.

Quinn said...

Hello SweetRandi,

In my experience, Neurontin has had no impact on my ability to have an orgasm. I also have a tremendous sex drive and it hasn't slowed me down at all. Sometimes the vulvodynia and pudendal neuralgia pain get in the way of my sexual activities, but the drugs don't.

Anonymous said...

Thank you so much for your comment Quinn. I have been sufferring with
vulodynia for 10 years. I have had 2 useless surgeries and been through 17 Doctors. I found an Angel of a doctor that knows her stuff. last year I had the Medronic
Nerve Device implanted but it is not really working well. The nuerontin works with the pain meds but I am not willing to lose my ability to orgasm. I am widowed with 2 teenage Girls and my Fiance lives out of State..I visit about every 5 weeks for a week..Until my Youngest goes to College, and I can move to Michigan to be with Him.
So, You have eased a BIG ANXIETY
for me. Thank You so very much. I also have to do much "soaking and ice packs " after but I pace myself.
Thank you so much, yet again.

Quinn said...

Can you tell me about the Medtronic Nerve Device? I haven't heard of it. Where was it implanted? How large is it? How does it work?

If you don't want to post about it here, please email me at lifewithvulvodynia AT gmail.com

Anonymous said...
This comment has been removed by a blog administrator.
Anonymous said...

Hi Quinn,
I decided to post it here. maybe others will benefit as well.
It is called Medtronic InterStim, and it is supposed to block nerve pain, though the FDA has it to help with Interstial Cystitis.It comes in 2 sizes..Because i am very thin, I could only get the small one, the size of half a cell phone,which is implanted in my left buttock, with leads, placed
through my pelvic region,into my entire backside nerves, while I was awake, till the doctor got to nerves that touched or was as close to touching my vaginal pain.They called it being in the "WEB" of the area. It was explained to me that electonic signals would be placed in these areas to help stop the pain. I was given 4 programs, that i can choose from and the ability to turn up the degree of intensity or lower it.
I have a scar where it is implanted and I know that in about 3 years it will need to to have its batteries changed so i will have another surgery.I personally feel it worked best on my right side and when the time come to replace the batteries,
I will "beg' to have the surgery redone on my right side. With the cost of the device and surgery, i doubt that will happen, with Insurance costs so high.
There is an excellent Pelvic Pain Center in Detroit, Michigan, so I will have help when I move.
I must stress, it does work.
It just doesn't work where I am painfree.. able to go off my pain meds.....which was the goal.
I want to be off my pain meds when I start a life with my Fiance, but I don't really see that happening.
I have Hep C and also some scoliosis, which made my body a difficult surgery since it wasn't symetrical.It was intense.
If you google Interstim Medtronic you can get an idea I think.
Again, It works for 50% of vulvadynia pain......I guess I'm just not in that 50% where it REALLY WORKED!
But, I stress, I am very grateful..
There is a deffinite difference of Excruciating pain when the unit is shut off....but I wish it worked better.
My Doctor is on a week's Medical Convention in Chicago and is always coming up with NEW ideas and new PLANS....so I am optimistic.
At least I am in safe and competant hands.
Any other questions I am more than happy to answer.
It has been and continues to be a journey.....we can all help and support each other, it seems here.
Thank you for allowing me to share.

Anonymous said...

Was that helpful? I hope so.
Such a nice feeling to connect with others who can understand...
because you just CAN'T understand
vulvodynia and the intensity of pain....unless you have experienced it..You made my day, Quinn.
Thank you.

Quinn said...

Dear Randi,

Thank you for all that helpful information. I'm so glad you've found something that has really helped you manage your pain.

That's every woman's goal here. I really believe that sharing your experience can really make a difference.

Thank you for being so open about your condition. Please keep me posted on how you're doing.

Thanks again for sharing.

Anonymous said...

MANAGE is the word....my goal is to get off the pain medication...
I am certainly very far from that, but I am am optimistic. Exercise
really has helped me as well, in the last few months...just to get my body moving and see it getting stronger...The pain is my "SECRET"...the cause of it, my "SECRET", except for a handful of people. I am a Widow..a Young Widow.. My children, who are teenagers know of course, and my Fiance, knows and is extremely understanding...but to others it is just unthinkable, to be in such pain and not be able to "cure" it..
So Thank You.....for having this Safe Place....I must say every google nuerontin says it totally removes the ability to orgasm, so I am TRUSTING You..haha...
Must keep a sense of humor....
It can always be worse.
I always also keep a Medication Container in my pocketbook at all times.....A missed dose of something that I need, is an experience I have learned from.
I read your blog and saw what happened when You missed Your dose of nuerontin...are You on any other pain management or other medications to help You? I as well am very careful with the Estrace Cream...I find it burns me...
If you want to email me directly..
anyone is welcome....I just have been dealing with this SO LONG...I feel so open about it....
Have a great day and thank you so much again.

Anonymous said...

Hi Quinn,
I have a question. I have gone off my nuerontin due to terrible ...terrible constipation.
Did this happen to You? and if yes, hoe do You deal with it.
Thanks for any suggestions.

Quinn said...

Dear SweetRandi,

I've had problems with constipation before, I never thought of linking them to the Neurontin.

Now I eat a bowl of Frosted Mini Wheats and a serving of prunes every day.

I'm so regular, you could use me to set a clock! I might give that a shot.

Anonymous said...

I'll try it and PRAY it works....
as I said I have gone off the nuerontin because of this...But, I will give your suggestions a shot..
Thank you so very much!