Reintroducing Myself

[MrsKris]

Hello Everyone,
I am reintroducing myself to the Pudendal Hope forum; I used to post when this site was TIPNA.
So here is the short version of the long history I have had with PNE.
My name is Kris and I came down with PNE during pregnancy in 2002. The pain started abruptly when I was 3 months pregnant and faded away three months after I gave birth.
I did not have any pain until five years later, in 2007 I came down with full blown bilateral PNE, and I always thank God that by then there was enough information on the internet that I knew what I had and what I was up against (I could find no information on this pain in 2002).
It took three years of testing to rule out any other sources of the pain, plus I was in such pain and a medicated fog that weeks would go by without me knowing.
In May of 2010 Dr. Hibner performed a decompression surgery on my left side. The pain reduction was dramatic and for a while I thought I was actually cured.
During my 18 month healing time I started having more good days than bad and then I would have what I called PNE periods. My periods would start the spasm and I would have to use those awful high end drugs to get through it. Then I would have to rest for a week or more after just to get over the spasm my period would cause.
Dr. Hibner performed a hysterectomy on me at the end of 2012 and this did stop the debilitating monthly pain.
Six months after my hysterectomy I came down with coccydynia. I have since had an X-ray, an MRI, two intense physical therapy exams and all I am told is that for some unknown reason, my tailbone is deviated to the right. That, and my right pudendal nerve is very irritated. The MRI showed the blood vessels that feed the right pudendal nerve are inflamed.
I still have PNE issues and right side pain that is more intense than the left. It is not 24/7 screaming pain, but it start to get there if I do not avoid the triggers to flair the right side off.
I am schedule to have my right side decompressed by Dr. Hibner in July of this year.


And that is my short/long story so far, and I hope I can help others like this board helped me. I also know that I need to reach out for support of others like you that can only really understand what it is like to have such a debilitating, hidden illness.
Having Hope,
Kris

[Positivepoppy]

Hi Kris
You have really been through the mill and so sorry to learn how much you have suffered already, this condition is awful and so glad there is now far more information on this however there is sadly still scepticism, ignorance and denial from the medical profession.
I had a hysterectomy June 2013 and have been in chronic pelvic pain since. Had a diagnosis in Nov 2013 in the UK and consequently had bilateral TG NERVE decompression surgery Jan 2014 and still in recovery.
I do feel positive that in time I will recover and refuse to allow this condition to win.
I sincerely wish you all the best for your forthcoming surgery, stay strong

[Violet M]

Hi Kris,

Just wanted to say welcome to the forum and wish you the best with your upcoming surgery in July. I guess you know what you are getting into, having gone through it before, right? And, I'm sure you have high hopes after having success with the left side surgery. Have you tried a ganglion impar block for the tailbone pain?

Violet

[konedog4]

Hope the surgery goes well for you. Please keep us all posted as to your recovery.

kone