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Hello from Gretel1

Posted: Wed Jun 06, 2018 7:00 pm
by Gretel
Every afternoon I hurt so badly I don't know what to do. I sit in a toilet tub of hot water Epson Salts water, nothing. I take 2400MG of Gabepentin, 60MG Cymbalta, 100MG of Seroquil daily. I have tried Opiod medication and it did not work. Please please help if you can.

Re: Hello from Gretel1

Posted: Wed Jun 06, 2018 10:56 pm
by Patty
Has anybody offered you any vaginal suppositories? At the worst if my pain I used one vaginally and rectally. Also Flexeril would help by knocking me out.

Re: Hello from Gretel1

Posted: Wed Jun 06, 2018 11:31 pm
by Violet M
Hi Gretel,

It looks like you have tried a bunch of things unsuccessfully. You still have some options such as try a trigger point injection into pelvic floor muscles that are in spasm. If that helps you could try Botox which is longer lasting than a TPI. Or you could try an intrathecal pain pump. Do pudendal nerve blocks help even temporarily -- for a few hours? I couldn't tell for sure from your previous posts.

Do you know what triggered your pain initially? History is always important in making a decision on what therapies to try. I just made a list of non-surgical therapies for someone else. Here it is in case it gives you some ideas:
1. PT
2. nerve blocks (although not without some risk because some have gotten permanently worse)
3. electroshock wave therapy (ESWT) - see Konedog4's posts on the forum
4. amniotic allograft injection - don't know of anyone getting permanently worse
5. Botox - althouth some people have had bad reactions to it
6. Restorative Exercise -(by Katy Bowman)
7. Manual therapy with Hesch method or Barnes method
8. Water therapy in warm therapy pool - someone named Vanessa Frank wrote a book about it
9. mindbody approach - did not work for me and I think you said you already tried it
10. Rolfing
11. Cognitive behavior therapy
12. accupuncture - did not work for me
13. Mr. PK just posted some interesting stuff in a recent thread: http://www.pudendalhope.info/forum/view ... =16&t=8904
14. Trigger point therapy
15. pulsed radio frequency ablation or cryoablation
16. Visceral manipulation

But I'm a try everything kind of gal. I even went for surgery from a doctor I knew very little about -- I was in that bad of shape. Just brainstorming ideas for you. If anyone has other ideas please add them to the list.

Violet

Re: Hello from Gretel1

Posted: Thu Jun 07, 2018 12:40 am
by Gretel
Thank you Violet and Patty. Most of these things I have tried. I appreciate your input.

Re: Hello from Gretel1

Posted: Fri Jun 08, 2018 5:42 am
by Violet M
It does get exhausting trying all of the different options and you can get really burned out on all of the doctor visits. I'm sorry, I'm not sure what to suggest other than once you catch your breath from the last treatment to try something on that list you haven't tried yet. I think you said you tried neurostimulation already. What about intrathecal pain pump? Did you already have PNE surgery or are you not a candidate?

Violet

Re: Hello from Gretel1

Posted: Sun Jun 10, 2018 2:11 pm
by Gretel
Falls caused my PNE. I have had all kinds of nerve block , amniotic allograft with botox, lots of PT, acupuncture, Trigger point therapy? pulsed radio frequency ablation. I will look up the meaning of rolfing, cognitive therapy, visceral manipulation, manual therapy with Hesch method or Barnes method, and electroshock wave therapy,(will look up Konedog4's post).

I have tried all the other methods and maybe some of these. I must check them out.

I certainly appreciate your help.

Has anyone mentioned on this forum about Lyrica being better than Gabepentin for them? I haven't seen it. maybe don't know where to look.

I haven't really tried Lyrica, but I think there are people who are much better off with it. I have been on Gabepentin for years. Maybe working against me now. Only help is with Medical Marijuana to sleep at night and Klonopin now.

Thank you all so much. :cry:

Re: Hello from Gretel1

Posted: Mon Jun 11, 2018 6:22 am
by Violet M
I can't remember who posted it but I know some people have said Lyrica works better for them. It seems like it would be worth a try if your insurance pays for it.

Violet