Health Organization for Pudendal Education

Miracle@work,
Thank you for letter. I had no idea PN could be hereditary. I will talk with Dr. Hibner about that when we see him.
I so appreciate your heart. I have talked with HerMajesty as well, and she has wealth of info. I felt drawn to her as well when I started researching and writing on this forum. I most defimetly value her opinion as well as many others.
I am daily praying and seeking direction. I have not ruled the Hesch method out but at this point I have to be specific and intentional about where we spend our money. I feel that the MRI is important b/c we need to pinpoint if you will a possible location of where the nerve is compromised. Then we are going to meet with Loretta, who works closely with Dr. Hibner and has treated several hundred PN/PNE patients specifically, as well as many other kinds of patients ( she is a PT). So for us going to see Dr. Hibner is a "one stop shop" if you will with very knowledgable people, specifically pertaining to PN.
I have watched the video's as well on the Hesch method. I just can't find alot of testimonials regardign his treatment of PN patients specifically(besides you and HerMajesty)
I want whatever treatment will help my daughter, but I also want proven track records, for me right now that is what I am looking at, I am benifitting form others trial and error. Right now I just don't feel led that direction. That doesn't mean I am right, I am human and I miss it....thank God for his persistance and honoring of his word. He will not give up on us and I am committed to seeking him even above what my "emotions" are saying.
Thank you again for writing,
Keep trusting God for the manefestation of your miracle. You are right he is touching many along the way to your healing..
I am joining in prayer with you
MOM

Mom,
I appreciate your comments; We are a rinkydink new nonprofit just starting to try to disseminate this work; and because of our newness we just missed the big Chicago pelvic pain conference which is where all the big names commonly mentioned on this board showed up.
You have put on my heart that it would be a good idea for our nonprofit to contact Dr. Hibner and Loretta and discuss with them the fact that we are encountering some clients whose PN is secondary to joint dysfunction. I don't know anything at all about Loretta (even her last name, will need to find that out, LOL), so I do not know if she screens for joint dysfunction and has a manual therapy component to her work, or if she is a soft tissue-focused PT. Maybe someone who has been to her can chime in and let me know if and how she screens and treats the pelvic girdle (bony pelvis). Anyhow I believe Dr. Hibner's staff is sincere in wanting to help this patient population and am hoping that if an effective joint screening prior to any invasive procedure is not already part of their protocol, maybe we can provide them the help to add this.
I brought this idea up at a Board meeting today and got the go-ahead so I will locate the contact info for Loretta and Dr. Hibner and approach them about this.
The MRI is a great idea because it should show if there is any congenital malformation causing these symptoms, or scar tissue etc. If her issue is joint dysfunction this will either not show up on the MRI at all, or will be hinted at by a deviated coccyx or widened pubic symphysis. If the MRI is negative for abnormality except for spastic pelvic floor muscles, I would recommend proper joint work instead of botox. Joint work is not invasive, and if the joints cease pulling traction on the mucles they might relax on their own. But botox is not only invasive, it will also only provide temporary relief if the pelvis is not aligned. It lasts a month or two, and when it wears off the exacerbating factor is still there to make the muscles spasm again. I am happy you are getting an MRI but concerned that the next step seems to be an invasive treatment of some kind (you said botox or nerve block), which might calm down the nerve for awhile but will not resolve the confirmed issue that your daughter has a misaligned pelvis.
I am happy we are Christians in this discussion because it takes the burden of worry of my shoulders that you will be led in the wrong direction. The Spirit does not lead you wrong when you make your decisions in the context of prayer, and I know you are praying with many people and that many of us are praying for your family.
I do thank you again for motivating me to contact Loretta & Doctor Hibner...it is an idea that has come to me a couple of random times and then floated out of my poor addled neurontin brain again: You have solidified that idea for me and caused me to put it down on paper which means it will get done!
All my love for your daughter; I have been following this thread although I have not contributed for awhile and I do also encourage you to home school. My kids go to Christian school and use some curricula such as A Beka which are also available as packets for parents to purchase for home schooling use. These are excellent programs and DO NOT require you to be a qualified teacher as the children learn beautifully just from doing the worksheets and assignments they supply. She has a right to be free from harassment, so it is either home school or crash your way into her school like the meanest mamma bear ever and lay down the law about your daughter's right to a bully-free environment...I think you have a little much on your plate to take on that fight right now.

For those interested here is some info from one of the people that made the labral tear connection. I'm sure we all have the "Heal Pelvic Pain" Book by Amy.

http://www.hisandherhealth.com/sexual-h ... -Conferenc

Stacey made the connection and got Dr. Coady on board and then they got Dr. Coleman at HSS to believe them. Many orthos did not but he took the time to look at the anatomy and see the connection.

I come here today to share a story with those who are suffering with PNE. It’s a true story of how one woman’s years of suffering was not in vain for when her hour of healing came her perseverance, courage and unwavering faith was a testimony to many people and God used her to perform a miracle within a miracle.

The story begins many years ago when a woman began to hemorrhage and the bleeding continued for 12 years without ceasing. I wish I could tell you her name but I cannot because she was only identified by her illness as, The Woman With The Issue of Blood. She is mentioned briefly in the Bible by Matthew and Mark but Luke, who was a physician, speaks in more detail of the woman with the issue of blood. Luke knew it was important for us today when we read and hear of her story to understand no physician was able to heal her and because of the nature of her illness and being under the Levitical law, this woman was labeled unclean. Anyone who even touched this woman had to go through a purification process which included burning their clothes and removing the ashes outside of the camp. Which also means in accordance to the Levitical law, because she was not healed, she could not live within the camp of the people and so she became an outcast living on the outskirts of her city. We do not know if this woman was married but if such was the case then because this woman was labeled unclean her husband had legal grounds to issue her a decree of divorce and abandon her. We do not know if this woman had children but we know if she did, under the Levitical law she could not live with, touch or nurture her children because of her illness.

Cast out, alone, completely abandoned for 12 years as her health declined and she grew weaker and weaker she must have questioned why she was left alive to suffer and endure such great physical and emotional pain. No, God had not healed her but He heard her cries and He kept her because God had a plan for her life and a purpose for her suffering and a predestined time for her healing.

And so it was for such a time as this, when the woman with the issue of blood heard Jesus was returning to her city, so great was her faith she said to herself “If I can just touch the hem of His garment, I shall be whole.” What wisdom this emaciated woman possessed to think of touching the hem of Jesus' garment because, you see, it is in the hem where all the loose ends are brought together of a designer’s creation. So despite being forbidden to enter into the camp where she was known as the unclean woman with the issue of blood, she hid herself underneath her clothing and her unwavering faith fueled her with strength and determination and she overcame her fears and began to press her way through the great crowd gathered around Jesus for she knew her healing was at hand.

Understand it was no coincident the timing of her miracle for as she pressed her way to Jesus, a devout man, a ruler of the synagogue named Jairus had fallen at Jesus feet and besought Him to come to his house to heal his 12 year old child, his only daughter who had become gravely ill. Jairus, a father who for 12 years had loved and nurtured his only daughter was desperate for Jesus to come immediately to his house and reach out and touch his daughter and restore her health. So it was as Jesus journeyed with Jairus and the crowd following them the woman with the issue of blood came from behind and touched Jesus’ garment and immediately she felt in her body that she was healed of her illness and immediately Jesus knew virtue had gone out of Him. He stopped and turned to face the great multitude of people and Jesus asked “Who touched my clothes?” And as He looked into the crowd He saw her and realizing she was not hid and knowing what was done inside of her, she came forward in reverence and trembling and she fell at His feet and told Him all. The whole multitude of people listened to her confession and when she had finished speaking Jesus reply to her was heard by all and the first word He spoke in His response destroyed the bondage of being labeled unclean, abandoned and an outcast. Jesus set this woman free and gave her her true identity when He told her “Daughter, thy faith has made thee whole, go in peace.”

Now at the same time Jesus was speaking to the woman who for 12 years had suffered and endured pain and rejection; who for 12 years had been forbidden from worshipping in the synagogue or participating in any of the annual feast and celebrations, word arrived to the ruler of the synagogue, Jairus, that his 12 year old daughter had died. Yes, it was at the exact time Jesus was telling this woman that it was not the touch which had healed her but it was her faith that overcame her fears and moved her to reach out when He passed by that was the source of her healing. What perfect timing Jesus chose to use this woman’s fearless faith for when He heard of the child’s death, He turned to Jairus and said “Fear not; believe only and she shall be made whole.”

I share this with you today to encourage you to continue to stand strong, to fight PNE with fearless faith. Although God has not healed you yet, He hears your cries and each day He keeps you because He has a plan for your life and a purpose for your suffering and a predestined time for your healing. As surely as God used the woman with the issue of blood, He is using you too. Fear not, only believe!

With Love ThruHim,
Mom’s friend and prayer partner

Amen, Thruhim, Amen! So glad Mom and her daughter have you! ~ miracle@work

ThruHim, you TRULY touched me!! I feel like the woman with the issue of blood--- how could we not when we suffer with this debilitating, humiliating disease in our most private parts.

If I may have your permission, may I repost your post on my blog?

Http://fighting-pne.blogspot.com

You don't have to answer publicly and I won't be offended if you don't want me to.

Excellent post. You ministered to me tonight. Thank you, Jesus.

A's Mommy

HerMajesty wrote: I don't know anything at all about Loretta (even her last name, will need to find that out, LOL), so I do not know if she screens for joint dysfunction and has a manual therapy component to her work, or if she is a soft tissue-focused PT. Maybe someone who has been to her can chime in and let me know if and how she screens and treats the pelvic girdle (bony pelvis). Anyhow I believe Dr. Hibner's staff is sincere in wanting to help this patient population and am hoping that if an effective joint screening prior to any invasive procedure is not already part of their protocol, maybe we can provide them the help to add this.

I would love to hear what you find out if you talk to Loretta, HM. You've probably seen her practice's website http://www.desertpt.com/services, but it says services include manual therapy (including soft tissue mobilization) and joint mobilization so I'd be surprised if she didn't screen for joint dysfunction. I've never been to her though so I can't say for sure. Just was researching her as I have an appointment in August.

A's Mommy, please feel free to repost the story of the woman with the issue of blood on your blog. It truly was from God through me to you. All praise and honor to our Most High GOD!

Thank you Faith for the link, no I had NOT seen her website; I miss a lot of info about the surgeons and their associates since I am not a candidate for decompression surgery. I am swamped but am hoping to be able to get a letter out by early February.

Thruhim,
Thank you so much for the story. I have been truly blessed. I am confident that their are many who will be touched as we seek our miracle!
Bless you mt sweet friend.
Thanks MOM