ABOG & Male Pelvic Pain Patients / URGENT**

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ABOG & Male Pelvic Pain Patients / URGENT**

Postby nervyjoe » Sun Dec 15, 2013 3:13 am

Hello everyone, I haven't posted in a long time, I had right sided surgery with Dr. Hibner in 05/2011, and the procedure was a complete success, I went from level 10 pain on a regular basis to 0 pain within months of surgery

Unfortunately this past summer my left side started bothering me and aside from a few weeks when pain almost went away completely, it's been back in full force ever since.

My right side is still 100% it seems, yet my left side feels like it's at square 1 of the process

Having been through this process once already has made me strong enough to know there is light at the end of the tunnel as long as proper treatment is received.

I contacted Dr. Hibner's office in July and made an appointment to go see him in Phoenix. Basically we made a plan where if m pain was the same in 2 months time or so all I had to do was make an appointment with his office and they would schedule me for the botox shots, after that if my pain was the same we would do the image guided in injections and if all of that failed we would do surgery on my left side.

Fast forward to today, and I am very concerned because just last week while I was at my physical therapist she told me that Dr.Hibner is no longer able to see male patients because of the recent change in regulations made by the American Board of Obstetrics and Gynecology. Obviously this news totally floored me. As soon as I heard I knew this was the worst news any of us males could receive, as from what I remember and now, Dr. Hibner is the specialist with the best success rates from treating males. He operated on me and cured my right side.

As soon as I got home from the PT I called Dr. Hibner's office to confirm and indeed it was all true. Apparently all patients, past and current were sent a letter explaining how they would handle their case. Depending on where you are or treatment they would either keep you or refer you out. I never got the letter, but alas I was told they would be referring me out to someone else and they offered me one last consult with Dr. Hibner so that he could make recommendations.

After speaking with Hibner's office manager about my options and more so about this ABOG, who out of nowhere decided to put us males out to pasture, they gave me the ABOG contact info and got a hold of them right away. There is also this article that came out in the New York Times last week for those of you who are just finding out about this:

http://www.nytimes.com/2013/12/11/us/me ... .html?_r=0

I spoke to a lady named Marcia Congleton at the ABOG, who is in charge of taking calls from people calling in about this new ruling. I was surprised to find a nice, understanding lady on the other side of the phone, who took the time to explain to me how this whole regulation change came about. Basically she told me that this new ruling was meant for Gyno's who were treating men in testosterone / hormone treatments, I had no idea bout this but apparently there's quite of bit of that going on and the board doesnt like it one bit, so they made this ruling without knowing or taking into account the pelvic pain community.

She also told me the board is meeting again in early January, and the reason for the meeting, or the '1st order of business' as she put it is to talk about and re-evaluate how this regulation change affects male patiens who are in treatment with OBGYN for pelvic pain. She suggested that I get in touch with David Margaulis, the PR guy that was hired by the ABOG to handle the fall out/backlash from this ruling. I called him right away and to my surprise he took my call as well, by the way he is mentioned in that NYT article...My conversation with him wasn't very long as I told him I was going to send him an email with my personal story in hopes that it could shed some light into this unfortunate condition that we suffer from. He was okay with that and said he would consider it and perhaps share it with the board. He wasn't without some questions though, he did say that he has received many calls from Hibner patients who all say he is the best Dr on the planet and the only one able to help us, yet he has not heard from Dr. Hibner himself, and until he does hear from him all of us calling in won't make much of difference. His angle is, 'I dont have any facts / statistics / success rates, all I have is a bunch of angry patients calling in'

I called Hibner's office with all this news and told them it's very important that Dr. Hibner himself contacts the ABOG, as it's critical for ALL of us that they hear from him and know about his male patients, the treatments available (or lack thereof, outside of him and a couple other OBGYN's) and his success rates.

I'm also thinking that we should start a petition, an online petition and get as many signatures as we possibly can. We need to unite and do everything we possibly can to cause the ABOG to make an amendment to this regulation and allow OBGYN's to treat males.

WE DONT HAVE MUCH TIME, AS THE ABOG MEETS IN EARLY JANUARY.

David MArgaulis email is davidm@prexperts.net.

We need as many people as possible writing him letters that are clear and based on facts, without being rude of course as that won't get us anywhere. We need to this for our cause, otherwise we face even more uncertainty regarding our treatment. The truth is the ABOG knows very little about Pelvic Pain, they are of the opinion that there are other Dr's out there aside from OBGYN's who can treat this...but of course they are wrong, unless I missed something the Dr's with the most experience and success are not neurologists. I know of a couple neurologists who have the worst reputations when it comes to pelvic pain treatment / surgery.

Thoughts anyone??
Last edited by nervyjoe on Mon Dec 16, 2013 10:24 pm, edited 1 time in total.
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Re: ABOG & Male Pelvic Pain Patients / URGENT**

Postby HerMajesty » Mon Dec 16, 2013 7:18 pm

somebody did start one, I got the link this morning. here it is: http://www.change.org/en-GB/petitions/t ... e_petition
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: ABOG & Male Pelvic Pain Patients / URGENT**

Postby Violet M » Thu Dec 19, 2013 6:31 am

Glad to hear you are doing better, Joe.

I think it would be good to write letters as well as signing the petition. Thanks for providing the info on who to contact.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: ABOG & Male Pelvic Pain Patients / URGENT**

Postby rel56 » Fri Dec 19, 2014 9:37 am

I am a patient of Dr. Hibner now. I have had 3 Nerve Blocks with No success. I just had the Botox injections last week. I can feel my pelvic floor relax, but I still have pain. It just feels different now - almost like someone kicked me in the pelvic floor area real hard. It is hard for me to walk. I feel best when I wake up, but after I start to move around I feel pain.

I don't think the botox is going to solve my problem. I think I will need the surgery. The problem is that Dr. Hibner only does one side at a time and I am not 100% sure which side my pain is on since it seems to be centered. I think it might be the right side though.

Your post made me fee that there is hope with the surgery. I am having great difficulty coping. Prior to the botox, I was using the Valium/Baclofen suppositories and also taking Oxycontin 10mg for pain. I don't look forward to the surgery, but it was great to hear that you had such success. Can you tell me what you experience was with the botox injections? How long did it take to really work for you?

Richard
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