TIPNA

majjperks · Joined: 27 Sep 2009 Posts: 6 Location: Olympia, Wa

Hi all,

I'm new here and thank you all for sharing your personal stories. They have helped me tremendously in dealing with this nightmare of PNE.

I got either PN or PNE after an injury last year to my tailbone/private area when I fell off a chair. At first I thought I broke my tailbone, and then about 6 weeks after the injury the nerve pain began...rectum pain and burning, bladder pain, feeling like I was being shocked in my clitoris, can't sit, can't have intercourse, can't wear regular pants, etc...

Long story short after going to many doctors I referred myself to U of Washington and started undergoing pn blocks. The first three gave mild relief, not even worth the trouble, but after the third about 1/2 the pain went away. The first 4-5 blocks were to the alcocks canal and I got huge relief in my rectum and anal burning. Then I requested the blocks be done in my icheal spine after reading Dr. Beco's diagrams of the nerve and started to get relief in my bladder and upper vaginal region. They allowed me a trial to do the injections one every 5-6 weeks for a year. This I have done and at times had pain of only a 1 toward the end.

This is not a cure though and because of the radiation exposure we don't want to do anymore guided blocks and I am uncomfortable with unguided vaginal blocks, and with the amount of steroid I've had now.

At this point, I need to look into a surgical cure for this problem because I need help. I have three small children and the depression from this is just about doing me in.

So, this leads me to my question...Dr. Filler is closest to me and says he has the best equipment for detecting the entraped area, and the least invasive procedure to decompress. I need advice from anyone who has been to him. My insurance won't pay for any of the docs who work on PNE because they are all out of my "network" so I'm looking at cashing out my retirement to pay for this surgery. I need to make sure I get some testimonials before making this choice.

Thank you,

Alesha
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pudendal nerve damage/entrapment after injury in 2008. Have received a total of 11 pn blocks with great relief but no cure.

Celeste · Joined: 23 Mar 2004 Posts: 2524

I agree with you it's time to stop the blocks and look into surgery. My experience with Houston was great; they have seen the most people.

SSIM is someone here who had surgery with Dr. Filler; it was unsuccessful. I have heard of a few others here who had treatment with him but nobody is raving about their results. I think his website is impressive looking, but I'm not convinced from posts on the forums that the results are there.

If you have to pay cash I think you should definitely discuss getting a discount up front. I've heard of people being able to negotiate the fees down to what is typically settled for from insurance.

Best of luck to you with whatever you choose.
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PNE from childbirth, 5/2002. Left side PNLMT 5.2, left side TG surgery 6/30/04, Houston.
Thickened SS and ST ligaments were grown together, encasing the nerve.

I'm cured. I hope you will be, too.

carmela b · Joined: 24 May 2008 Posts: 56 Location: THOUSAND OAKS, CA

ALESHA,

MY ONLY EXPERIENCE WITH FILLER WAS IN TRYING TO CONTACT HIM. I EMAILED AND I CALLED HIS OFFICE AND HAD HOPES HE WOULD SEE ME. SINCE I HAVE A SPINAL CORD STIMULATOR AND INTERTHECAL PUMP I CAN'T HAVE AN MRI. HE REQUIRES AN MRI BEFORE HE WILL SEE YOU. I COULD NOT MAKE AN APPOINTMENT WITH HIM THEY TOLD ME THEY COULD NOT HELP ME. THAT REALLY FRUSTRATEDD ME. HE MAY BE A GOOD DOCTOR BUT I HAVE NOT HEARD ANYTHING POSITIVE ABOUT HIM. I KNOW SOMEONE ON TIPNA THAT HAD THE SURGERY WITH HIBNER AND SHE HAD A TERRIBLE EXPERIENCE. SHE IS MUCH WORSE SINCE HER SURGERY. I KNOW THERE ARE PEOPLE OUT THERE WHO HAVE HAD A LOT OF GOOD LUCK WITH THE SURGERY BUT THERE IS NOT THAT MUCH ON TIPNA ABOUT THAT.

I WISH YOU THE BEST OF LUCK IN DECIDING WHAT TO DO.

CARMELA