New to forum with diagnosis of PN

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New to forum with diagnosis of PN

Postby Charlotte B » Sun May 07, 2017 4:00 am

Hi everyone,
Just want to say hello and give a brief rundown of my story, but first I just want to say how helpful this site has been to me in helping me understand what is happening to me and second to tell you what a wonderful group this is for being so informative and supportive.

My burning sitting pain started 3 years and seven months ago with the burning buttock pain. My primary care dr. Gave me good pain medication and I was able to live life pretty normally until the uproar about the oppiate usage came about and I had to go to pain management. I have some back issues and after all the blocks and RFA done to L4-5 he thought I should be weaned off my pain Medications! I initially went to him because they listed pudendal nerve blocks on their website! I have been on tramadol 50 MGM, hydrocodone 7.5/300 both three times a day, OxyContin 20 MGM twice a day plus gabapentin 300 MGM three times a day. Since the pain management dr wasn't addressing the pudendal nerve issue I saw Dr. Chapman in New York, unfortunately he had to go to a hospital emergency and I saw the Physican Assistance who agreed my complaints sounded like PN and she ordered the MRN at HHS. The report showed prominence od the pudendal nerve just before Alcock canal on right and scar tissue on the bottom of my pelvic floor. I saw Dr Chapman for the follow up and before he does the pudendal nerve block he wants me checked by a gynecologist who treats pelvic floor issues. He also suggested I see Dr. In New Hamshire. I have an appt for this Friday for that and also Tuesday I'm seeing a urologist who sees pelvic floor patients. The pain has gradually been increasing. I rarely sit and the more I do the more symptoms I get. The other symptoms and PGA and rectal pain.

The pain management Dr wants to do a hypogastric plexus block after I have the PN block. Has anyone had any success with these?

Any suggestions would be appreciated.
Charlotte B
 
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Joined: Mon Dec 15, 2014 9:25 pm

Re: New to forum with diagnosis of PN

Postby Violet M » Tue May 09, 2017 6:40 am

Hi Charlotte,

Welcome to the forum.

Nerve blocks may provide valuable diagnostic info but I don't know many people who have had permanent relief from them. There is a slight risk associated with them as well.

Have you had a chance to be evaluated by a good physical therapist who specializes in pelvic pain issues?

It is unfortunate when docs want to wean you off your meds when you are still in a lot of pain. The problem with opioids is that they aren't really a good permanent solution to pelvic pain because you can develop a tolerance to them. You may want to do a search in the upper right corner for Cora's posts about suboxone. It contains naloxone in it which helps to prevent you from developing a tolerance to the opioid in it.

Wishing you all the best with your upcoming appointments.

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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Violet M
 
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Re: New to forum with diagnosis of PN

Postby Charlotte B » Wed May 10, 2017 1:02 am

Thank you Violet for your suggestion, I googled it and it says you can be addicted to it as well. Pain management Dr I think finally sees how much pain I was in. The PA at Dr. Chapman office suggested methadone or marijuana for pain. Here in NJ it's very expensive getting marijuana, several $300 visits before they will prescribe it and it's not cheap here.

I did have a great appt with Dr Greenstien today, he's listed on the forum. He checked for trigger points and boy did I have them. I was surprised because last year I went to Bella Physical Theraphy and she thought I had none! He recommended the Headache in your pelvis book, recommended pelvic pt with some recommendations, psychological counseling because "you're not just a painful pelvis" you need help coping with this and ordered the Valium 5 MGM,Baclofen, ketoprofen supp at night. He knows what is going on. My daughter was in tears because he wants to help and knows what to do. Can't wait to get them to see how they help. Friday is the gyn appt. so far the opioids are helping.
Charlotte B
 
Posts: 3
Joined: Mon Dec 15, 2014 9:25 pm


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