I'm hoping to compile a good list of compounded suppository and topical ointment ingredients, rather than have patients need to search many pages and threads. I've used my current meds for years, and don't recall specifics of things I tried long ago. I'd also like to pass it on to my Gyn, who does some basic pelvic pain care, but appreciates my knowledge as his research time is limited. He works hard seeing patients in several clinics at a busy hospital, is Ob/Gyn Chief, and can't attend all the the pain conferences he'd like to. We swap e-mails and share research, and he tries his best to help pain patients.
SUPPOSITORIES:
1. Valium 5 mg with Baclofen 4 mg
2. Belladonna mg with opium mg (from Dr. Hibner long ago)
3. Amitriptyline 2%, Baclofen 2% and Nifedipine 0.3% (haven't tried it, but my PT has for other patients)
4. Diazepam (Valium) 5-10 mg
5. Diazepam and Lidocaine 5-10%
TOPICAL OINTMENT FOR VULVODYNIA/PGAD:
1. Lidocaine 7 mg with bupivicaine 0.7%
2. Lidocaine 5 mg
3. Same as above
4. Same as above
5. Same as above
Thanks for contributing!
Suppository & topical ointment options
Suppository & topical ointment options
Last edited by quilter on Fri Dec 08, 2017 6:53 am, edited 1 time in total.
Acute left vag/rectal pain 1999 lowering into chair. Dx 2006 with PNE/VV by PTs, Dr. Garcia, Weiss, Hibner. Many shots. PNMLT: left PN barely fuctional. Left TIG by Dr. Hibner 2007 (ST lig). 75% improved 1 year postop, slow decline. Pelvic floor Botox 2010. Left sacral SCS 2011 after good trial; removed 2012 due to NEW left S2 & rectal pain, bowel freq. Re-do left TIG by Dr. H & 5-day ketamine 2013; 1-1/2 years postop 70% improved. New post-SCS Sx are worse than PN Sx.
Re: Suppository & topical ointment options
Hi Quilter,
So you are asking others to post suppository meds and ointment that have worked? That's a nice idea. When I saw Hibner one year ago, he prescribed a vaginal suppository compound that I used only once because it burned (!). Your post made me remember this, so I pulled it out of the back of the refrigerator. It includes Diazepam, Baclofen, and Ketamine, so it also includes the diazepam. Do you have any problems with the compounds burning? And if so, does that go away? I think I remember thinking that the burning might be from the ketamine, so maybe a compound without that would be useful. I also have dozens of boxes of lidocaine (5% and the 2%), but it doesn't do much. In fact, the 5% burns for 5+ minutes after I put it on. So, I just use ice when my other meds aren't doing enough.
Thanks,
April
So you are asking others to post suppository meds and ointment that have worked? That's a nice idea. When I saw Hibner one year ago, he prescribed a vaginal suppository compound that I used only once because it burned (!). Your post made me remember this, so I pulled it out of the back of the refrigerator. It includes Diazepam, Baclofen, and Ketamine, so it also includes the diazepam. Do you have any problems with the compounds burning? And if so, does that go away? I think I remember thinking that the burning might be from the ketamine, so maybe a compound without that would be useful. I also have dozens of boxes of lidocaine (5% and the 2%), but it doesn't do much. In fact, the 5% burns for 5+ minutes after I put it on. So, I just use ice when my other meds aren't doing enough.
Thanks,
April
Re: Suppository & topical ointment options
Even if something didn't work well, I (and my GYN) are interested to know what doctors are prescribing (now and in the past) since there are so many options for compounds. I should have contacted Violet first to see if there's a better way to go about this.
Burning for a few mnutes from topicals seems to be fairly typical from what I've read here over 11 years, so give it a try and see if it helps. I always had brief burning with lidocaine 5mg (no worse since we increased to 7 mg and added bupivicaine to prolong the effectiveness). If I'm extra-sensitive from an episode of hyperarousal, I know the burning will be bad and ice first. It's just part of the program, but the 2-3 hours of numbness is worth the initial discomfort. I use ointment more at night and when I have to be active (or away from the house), and ice isn't an option. I've never had burning from any of the suppositories. I usually coat the end with hemorrhoid ointment, sometimes lidocaine if the rectal pain is really bad. Good luck, hope you find something that helps.
I recently looked into vendor-available lidocaine (from the internet or regular pharmacies) to see if there was something less costly than compounded. Every brand had many unnecessary chemicals, fragrances and even flavors. Many with propylene or polyethylene glycol, which many PN patients find irritating in lubricants. I tried one from CVS's vendor a few years ago that had spearmint (no clue why), and burned badly for hours. Tossed it. Plus, I just had allergy testing because of my severe adhesive issues, and learned that I'm also allergic to fragrance & natural oil compounds. I have to stick with the expensive, pure compounded products. My insurance won't contribute, but will allow EMLA. It's a fraction of the strength & full of extras. Both my pharmacist & pain doctor said not to use it for vaginal/vulvar because of the high sodium/Ph. It's intended as occasional numbing for a vaginal (tattoo or derm procedure), but not multiple times every day.
Burning for a few mnutes from topicals seems to be fairly typical from what I've read here over 11 years, so give it a try and see if it helps. I always had brief burning with lidocaine 5mg (no worse since we increased to 7 mg and added bupivicaine to prolong the effectiveness). If I'm extra-sensitive from an episode of hyperarousal, I know the burning will be bad and ice first. It's just part of the program, but the 2-3 hours of numbness is worth the initial discomfort. I use ointment more at night and when I have to be active (or away from the house), and ice isn't an option. I've never had burning from any of the suppositories. I usually coat the end with hemorrhoid ointment, sometimes lidocaine if the rectal pain is really bad. Good luck, hope you find something that helps.
I recently looked into vendor-available lidocaine (from the internet or regular pharmacies) to see if there was something less costly than compounded. Every brand had many unnecessary chemicals, fragrances and even flavors. Many with propylene or polyethylene glycol, which many PN patients find irritating in lubricants. I tried one from CVS's vendor a few years ago that had spearmint (no clue why), and burned badly for hours. Tossed it. Plus, I just had allergy testing because of my severe adhesive issues, and learned that I'm also allergic to fragrance & natural oil compounds. I have to stick with the expensive, pure compounded products. My insurance won't contribute, but will allow EMLA. It's a fraction of the strength & full of extras. Both my pharmacist & pain doctor said not to use it for vaginal/vulvar because of the high sodium/Ph. It's intended as occasional numbing for a vaginal (tattoo or derm procedure), but not multiple times every day.
Acute left vag/rectal pain 1999 lowering into chair. Dx 2006 with PNE/VV by PTs, Dr. Garcia, Weiss, Hibner. Many shots. PNMLT: left PN barely fuctional. Left TIG by Dr. Hibner 2007 (ST lig). 75% improved 1 year postop, slow decline. Pelvic floor Botox 2010. Left sacral SCS 2011 after good trial; removed 2012 due to NEW left S2 & rectal pain, bowel freq. Re-do left TIG by Dr. H & 5-day ketamine 2013; 1-1/2 years postop 70% improved. New post-SCS Sx are worse than PN Sx.
Re: Suppository & topical ointment options
There was a gal years ago who posted that nitroglycerin helped with rectal pain, especially after BM's.
For mild to moderate pain I found 20 % benzocaine (extra strength vagisil) helpful. It's over the counter.
Violet
For mild to moderate pain I found 20 % benzocaine (extra strength vagisil) helpful. It's over the counter.
Violet
Last edited by Violet M on Tue Dec 12, 2017 6:19 am, edited 1 time in total.
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.
Re: Suppository & topical ointment options
Thanks for the tips, Quilter. The suppository (with the compound I posted) burned for many hours. I even tried to wash it out, and it still burned, but I'm open to other options. I'll keep my eye on this thread for ideas. It's also good to hear that initial burning with lidocaine is typical and that moving to 7% doesn't increase the burning.
Thanks,
April
Thanks,
April
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Re: Suppository & topical ointment options
I tried Nifedipine ointment by itself for rectal pain, but it did not work for me. Perhaps in a suppository form it would work differently. I read about someone having success with it online so I asked my doctor for it. If you want the exact prescribing info for the ointment, just let me know and I will find it.
Stephanies
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
Re: Suppository & topical ointment options
Stephanie,
Sorry, I did't see this in December as we were on the road for a Christmas trip. Working on household repairs (and dealing with pain) since our return.
I'd love to know more about Nifedipine for rectal pain. I'm currently doing battle wit my new insurance for compounded Baclofen/Valium suppositories. Thanks for the help!
Sorry, I did't see this in December as we were on the road for a Christmas trip. Working on household repairs (and dealing with pain) since our return.
I'd love to know more about Nifedipine for rectal pain. I'm currently doing battle wit my new insurance for compounded Baclofen/Valium suppositories. Thanks for the help!
Acute left vag/rectal pain 1999 lowering into chair. Dx 2006 with PNE/VV by PTs, Dr. Garcia, Weiss, Hibner. Many shots. PNMLT: left PN barely fuctional. Left TIG by Dr. Hibner 2007 (ST lig). 75% improved 1 year postop, slow decline. Pelvic floor Botox 2010. Left sacral SCS 2011 after good trial; removed 2012 due to NEW left S2 & rectal pain, bowel freq. Re-do left TIG by Dr. H & 5-day ketamine 2013; 1-1/2 years postop 70% improved. New post-SCS Sx are worse than PN Sx.