Health Organization for Pudendal Education

Hi, am pretty fed up with this pain, day in day out it's miserable soul destroying pain. Have been positive, stubborn, told have high tolerance to pain, tried all avenues, over a dozen consultants, surgery, botox, flew around Europe visiting the best physios around. Yet still I suffer. When is enough enough. My children in fact yearn to play with their father but it's always short & under sufferance. I join a gym which gives me new focus, now this too increases my pain so have to stop. I can't escape from it. So then it comes to medication, am taking amitryptyline last 3 years, can anyone recommend a med that will help that still allows me to function. Am sure there are lot of differing opinions but would be grateful to hear them. Also what is aim when taking pain med, complete pain relief or partial? My pain is always anal, told have exceptionally tight pelvic floor & tight sphincter which is unusual I understand to have both. Most agree some pudendal but largely muscular issue. Thank you

Hi Chris. My name is Michelle and I have pne and pn and have been suffering for 6 years now. I understand ur frustrations n not being able to get away from the pain. It is very very exhausting mentally, emotionally, n physically. I have tried a slew of pain medications (vicodin, percocet, oxycodone, oxycontin, fentanyl patches, and methadone). The one that worked best for me and I could still function was methadone. I didn't want to use it at first because of how scary this drug is. But it serves its purpose. And when ur in pain quality of life and function is more important than the effects of this pain med. I was able to function and have relief from the pain. I could play with my son and do normal things. I still couldn't push it or sit, stand, walk for to long but was able to do these things in small amounts. I just recently got off all my pain meds and am managing. But my body is still detoxing 3 wks later an will be for up to 6 wks. Methadone has a half life so it stays in ur body longer and lasts longer. It's a long acting pain med. the side effects of it for me was weight gain, hormone embalance, n skin issues. But those were nothing to me to get the pain relief. I have been told it is the best nerve pain medicine there is that's legal. I didn't get the sleepy foggy head nodding feelings on it either like u get with short acting medicine like Percocet, vicodin, Demerol, OxyContin, etc. Sometimes I would get those feelings when I added break through short acting meds like oxycodone. The big problem with pain meds is with short acting meds u will eventually need more and more to get relief, ur tolerance will get more n more. Then with pain meds it takes the pain away but taking them long term causes ur pain receptors to hyper sensitize. So u will start to feel more intense pain when u injure yourself elsewhere, then a person whom is not in chronic pain and gets a toothache, twist an ankle, cut yourself, etc. But the question again is quality of life vs the side effects of pain meds? What I've learned from getting off the meds is that it my pelvic floor muscles are now beginning to relax for the first time in for 6 yrs. which is helping with the nerve pain because they are not constantly spasmming n pinching my nerve. I'm sure my last pne surgery helped with the nerve as well. Now that I'm off the meds I can pinpoint exactly where the muscles are tight and can get relief from physical therapy (only muscle massaging), orgasm and sex, and my neuro stimulator. I regularly crank the stimulator up as high as I can stand and move my hips around and it will eventually tire the muscles. I also have learned that the muscles play a huge roll in the chronic pain. The muscles affect the nerve and vice versa and around and around it goes. I hope this was helpful information. If you have any questions please ask!!! Good luck with figuring out which n what meds will work for you.

Hi Michelle, many thanks for your input which i found helpful. I have never heard of methadone being used as pain med only as heroin substitute. Would a doctor routinely prescribe this if you asked or is it seen as a last chance med? I find it impossible to get pelvic & sphincter muscles to relax. I even had sphincterotomy & high dose botox but still am told exceptionally tight. Are there any methods you have used to relax your pelvic muscles, tiring them out sounds good plan but in process are you also not strengthening them thus creating vicious circle. Thanks again, Chris

Hi Chris,
Nothing has worked for me in a wonder drug way or even half tbh. However, the best mix for me has been Lyrica (300 mgs) Cymbalta (stay at 50 mgs) with as much tramadol for muscle bone and connective tissue pain (piriformis almost exclusively) as I need up to 8 x 50mg per day.
I have just titrated the Lyrica up and it does help me. The best way I can describe it is that I physically feel 'lighter', or probably best described as feeling like my pelvic and legs (especially right/worst leg) feel much heavier without it. . . . I don't feel 'lighter' than normal, floating or anything like that.
I really do value the Cymbalta/duloxetin but have heard that higher doses don't work any better for nerve pain, although would for depression of course and who DOESN'T at least get sad about all of this!
The Tramadol is good for actual 'normal' pain but is can be very constipating as can a lot of pain killers.
I have never tried any muscle relaxants, except diazapam when I had a ridiculous huge muscle spasm just after my fall, but it didn't do any good then, so haven't had any regular prescription. Well I didn't realise that some of my muscles are still in spasm until much later. I don't really like drugs tbh but needs must.

ChrisUK wrote:So then it comes to medication, am taking amitryptyline last 3 years, can anyone recommend a med that will help that still allows me to function. Am sure there are lot of differing opinions but would be grateful to hear them. Also what is aim when taking pain med, complete pain relief or partial?

Hi Chris

Have you tried Gabapentin in combination with Amitriptyline ?- the combination is 'meant' to work better - acting in different ways on the nerves.

After over 2 years on amitriptyline i am now on Nortriptyline (less sedating but similar to ami) and Gabapentin. Pregablin/Lyrica and Cymbalta - which Helen has said about - i think are drugs that are offered next and better acting.

I am not pain free but looking for manageable relief - still trying to find levels that work enough but do not have too many side effects. Currently on daily 1800 mg gabapentin and 5mg Nortriptyline (5mg is too low really but the pain consultant has said try to come off it if i can - looking like i will have to up the dose again though - i can just about tolerate 30mg before too much constipation etc ) - i am also currently trying acupuncture again. Like Helen I don't really like any of the ***** drugs - but they do help.

I am in the UK - my pain consultant arranged with the hospital pharmacy for me to have a 10% Ketamine cream made up to try - i tried this for 5 days but couldn't tolerate it after each application on my vulva skin. Maybe i should have given it longer - others on here have used similar creams and may comment. Some cream localised anally may help you.

Have you been referred to any Pain Management Consultants ? There must be more than just amitriptyline to help you.

Rosemary

Thanks Rosemary, I will check out the ketamine cream you mentioned. If problem is largely muscular does this affect the medication given? Ie would muscle relaxant be better?

ChrisUK wrote:Thanks Rosemary, I will check out the ketamine cream you mentioned. If problem is largely muscular does this affect the medication given? Ie would muscle relaxant be better?

Hi again Chris

Just to say that the Ketamine cream i had was made up in a Unguentum M ointment - Nyt has used 20% Ketamine in a PLO base and posted that the ketamine may make me feel a bit loopy and to use it at night but i never got that far with it. I am going to speak to the consultant about a plo base.
This was all put to me as a 'trial' and the ointment made up on the nhs - i may not get a repeat go.

Sorry I can't answer your question about muscle relaxants.

Rosemary