Breaking the pain cycle..

[Alyssa5]

Check out this webinar..

youtu.be/fI8wFNgJf20(Not working as expected?)

[Pafen]

I am on a new medication at the moment. I won't jump to any conclusions but the last few days there has been time where I've felt hardly any pain. Like a 2/10 pain if that at times.

When it wears off I can feel the pain coming back however maybe if it continues to help break the pain cycle for me it could be good long term.

Of course it's only early days yet though and time will tell.

I also have my botox booked in for the 11th of December. I will see how things go as the time gets closer whether I get it done or not.

[Ladydidi in reply to Pafen]

Hi! That's great news for you!! What is the name of the medication?

I just had Botox to pelvic floor last week. Hasn't kicked it yet. It does help. I'd get Botox anyway if I were you as there's really no side effects, except the anesthesia but they say it takes multi-approach to conquer this beast. But I could understand if you are feeling a 2 why bother. I'm very happy for you!

[Pafen in reply to Ladydidi]

The new medication they put me on is a slow release drug called palexia. It comes in 50mg,100mg,150mg and 200mg. I am only on the 50mg but combined with my 75mg of lyrica it really does seem to reduce the burning,

It is an opiate, but if it helps with the pain for now then I will take it!

Yeah I have to be knocked out for the botox. So the botox certainly didn't make you any worse did it? I just didn't want to risk being in extra pain close to xmas, I have just recovered from a pulsed radiofrequency which didn't seem to help on my pudendal nerve. It only angered things for about 8 weeks.

Apparently it's my left obturator internus in spasm which they can see on ultrasound.

[Ladydidi in reply to Pafen]

Thanks I'll research that drug. I'm taking Lyrica 75mg 3 times a day plus Percocet 3 times a day too. So Pslexia would replace the Percocet. I've been on these drugs for 3 years now so I wonder if they just stop working after awhile?

This was my 5th round of Botox over the years. I get 100 units on each side in the obturator and ani leavotir (sp?). At the same time I get perineal nerve blocks done. Now that I think about it, the first time I had it done I had a horrible flare up for about a month. Very hard to walk with vaginal pain/spams. So, it's really hard to say? Perhaps waiting might be better. I'm sorry the radio freq didn't help you. Honestly, the more I read this forum the more it seems like the less you do the better. This disease is so difficult?!$&@!! But I can say that I have had relief from the Botox, and recovery is a mild flareup, maybe a week but depends on what responsibilities you have.

[Pafen in reply to Ladydidi]

When the pain meds wear off I can still feel that my pain is quite severe. I suppose though even getting some sort of relief from medications is difficult with this condition. The palexia still seems to be working better for me than the oxycodone so I am hanging in there.

It feels like my pain has spread into my lower back as well, like a deep dull ache instead of the raw pelvic floor burning I get at times.

I still want to get the botox done as I would like to reduce my medications eventually if I can. Plus there is the problem of developing a tolerance to all these medications. Maybe that's what happened with the targin I used to take.

Keep me updated on the how the botox goes for you.

[Ladydidi in reply to Pafen]

Hi

I agree, you def should get the Botox. I had my first round of Botox in 2012 and at that time I had really bad lower back pain predominately on the left side. since getting Botox it's not something I think about hence, it's gotten so much better. From my past 5 Botox I'm am def a fan. Really no negatives. Hopefully it will give you some relief too. 😊

[Pafen in reply to Ladydidi]

My pain specialist also mentioned about getting a cystoscopy. It's about the only test I haven't had done. I had a urodynamic study because sometimes I double void but it came back mostly normal. I don't seem to get bladder pain but I do have issues with straining to pass urine because of the spasms?

How long is the botox lasting for you?

[Ladydidi in reply to Pafen]

Make sure they numb your urethra really good with lidocaine jelly and let sit before they put the scope in. I have horrible pee retention too. I think that effects the lower back. I pee in a wash basin, I find that angle of squatting where it will come out easier. I also have a squatty potty. You can google. The Botox lasts between 3 months and by 5 it's worn off. The very first Botox injections I got did not take at all. You cannot get Botox before 12 weeks so at that 12 weeks I got a second injections. So if for some reason you do not feel better at 12 or 13 weeks I would definitely get a second round.

[Hidden in reply to Ladydidi]

Hi,

I wanted to tell you that Lyrica caused pee retention with me. So did Amitriptyline. I never had problems with my bladder until I took amitryptaline. When I got off it, it all went away. Then years later I got on Lyrica and those symptoms came back. It was definitely the Lyrica. I can not emphasize enough how important it is with BOTH THOSE DRUGS to WEAN OFF SLOWLY if you do decide to stop. The withdrawal from Lyrica landed me in the hospital; it was horrible. I just wanted to share that with you because I was reading about your symptoms. I am considering Botox as well and am wondering if it will help. Good luck with your symptoms

[Ladydidi in reply to Hidden]

Hi,

Thanks for letting me know that about Lyrica. I've been on 75 3x day for two years now. I actually do not think it's doing anything for my pain. I've also been thinking about getting off of it. Thx for that!! Now I really do. Yes, Botox has helped me. Best wishes to you!

[Hidden in reply to Ladydidi]

Thank you Would you mind telling me what you think Botox has done for you? Did it help with bladder pain, incontinence, etc?

PLEASE remember what I said about weaning off Lyrica slowly. I went through Hell by stopping off suddenly. Then I went on the internet and there were a lot of people saying the same thing. In the hospital the doctor said "We see this all the time". I couldn't believe it! Since Neurontin is very similar, the same would go for that drug too. I have been taking that for chronic pain in my legs and I am about to wean off that slowly. I hope you feel better...best wishes to you as well!

[Alyssa5 in reply to Hidden]

Botox helped relax the ractal muscles (rectal pain); I had pain with bowel movements. With Botox, it helped eliminate painful bowel movements.

[Hidden in reply to Alyssa5]

Thank you

[Ladydidi in reply to Hidden]

Hi! Botox helped me with pain in my pelvis-hard to explain, best example would be I can stand, walk a bit better for a bit longer. Also, helps a bit with pee retention. I have many problems so it gives me 25% relief in the one area. It's better than nothing and it's a pretty easy procedure. Thx for tip w Lyrica. Best of luck!!

[Rome81 in reply to Pafen]

Hello, could you please let us know how it went and what medication did you take?

[Pafen in reply to Rome81]

I had Botox injections into obturator internus and the puborectalis muscle on Friday. It's still early days yet so I can't say I notice much difference. Seems a bit like gas is getting stuck in my bowel.

Currently taking 75mg of lyrica and 10mg of endep at night. I also take 10mg of targin twice daily. I get less burning if I increase the lyrica to 150mg but it effects my bladder and takes me longer to pee.

[Rome81 in reply to Pafen]

Thanks - how did the other opium medicine go?

[Pafen in reply to Rome81]

I did try palexia which worked quite well. But I felt too disconnected from myself, it was a weird feeling and I found it very hard to concentrate.

But it definitely works better on rectal pain then the other opiates I've tried. It's worth a try as some people have little side effects.

[McGraw]

Thank you God a light at the end of a dark tunnel !! everyone must listen to this !!!!

[Ladydidi]

Hi there!

I listened to this live the other day. It's fantastic! Everyone should listen to it for sure! I need to put it into action. After 9 years of pain it is hard.

Thx for posting this Alyssa!

[Rosepetal60]

Thank you for posting this.

[Pafen]

You might have built a tolerance to the Percocet? I used to take oxycodone, this new drug I find the side effects aren't as bad.

I still have breakthrough pain at times but also there are also times when the pain is quite low.

You are right it does seem to be a hard condition to treat. Lots of these treatments seem to help the symptoms but not cure the disease/source of the pain.

Some theories on pelvic pain are an unidentified organism/bacteria which doesn't show up on tests.

I try to keep as active as I can but it does get hard at times. I still do exercise quite regularly thanks to the pain meds.

It does get exhausting trying multiple procedures.

At the end of the day I don't expect a cure, I just want to get the pain down to a 2/10 and keep it there permanently with no flare ups so I can get on with my life!

[Alyssa5]

Here's another interesting article:

scienceblogs.com/cortex/200...

[Ladydidi in reply to Alyssa5]

Thanks Alyssa. How are you doing?

[Formand in reply to Alyssa5]

Hi Alyssa! What is the live talk you posted that others liked so much?? Thanks for your help!

[Alyssa5]

I'm just hanging in there..

[Alyssa5]

I don't remember but I'll try to look for it.