Health Organization for Pudendal Education

Hi Edwina
I am not sure if you have been referred to a UK Pain Clinic as such but when i went there i was given Nortriptyline and Gabapentin combined at one point. The Nortriptyline replaced the Amitriptyline that i was previously taking. The Nortriptyline is a similar drug to Amitriptyline with less side effects. The pain consultant took me up to high levels of Gabapentin in combination with the Nortriptyline at a lower level but i couldn't get the pain under control and the side effects weren't good. He took me to high levels for me to try and find a level that worked. I had to titrate down off it gradually. I ended up just taking Nortriptyline and after a while gave up on that.You have to titrate down off that too if you come off it. I was given Tramadol by my GP for any really bad pain but in general the clinic were reluctant to give any sort of opoid/opiate drug. They said it was due to constipation issues.I never took the Tramadol but the packet is still there.

I was also referred by the Pain Consultant to see the clinic pain psychologist who helped me quite a bit mentally to learn to cope with the pain. I don't know if this is an option for you. I had 12 sessions on the NHS with the psychologist. After some time i asked the psychologist if i could waiver my patient confidentiality with her and asked her if she had another patient in a similar situation to me locally who i could contact and who would be willing to contact me. She put me in touch with one lady locally who i have now kept in touch with by email for sometime. We have never met up but the opportunity is there at any point if we wish to take it up.

This was before the UK Pelvic Pain Facebook Group was set up. If you wanted to you may find someone/others local to you if you looked into the Facebook group who would contact you privately so that you do not have to remain on Facebook. It may mean you are not so alone with this and there might be more in your area available to you that i don't know about.

I find anything "outside" of this pain that you can do takes some of the fear of how bad this is or how bad it might get as you are occupied with something else albeit in burning pain while doing it.

Rosemary X

Thanks Violet I'll try that. Finding ice a blessing.
Pafen I think I have a heat pad I'll have to dig it out.
Rosemary, do you think the pain clinic have better ideas than the GP? At the moment the Amitriptyline and cocodamol are making me sick. Thanks for popping bye, Edwina x

Hi Edwina
The pain consultants are usually anaesthetists (spelling ?) as well so pain control is their specialism. My GP gave me Cocodamol it did nothing and made me queasy. I'm no expert but i don't think from my reading that Cocodamol does anything for nerve pain.
I asked my GP to refer me to Dr Greenslade in Bristol who is mentioned on here. I had to go privately though. He wrote back to my GP saying to refer me to my local pain clinic.
At the local pain clinic i saw a gynaecologist and pain consultant working together but i wasn't examined there by the gynaecologist. The main objective was the pain control.
It may be worth asking your GP to refer you to a pain clinic to explore other possibilities. That is the way i saw the pain physcologist too she was part of the clinic set up.The GPs are after all General Practitioners and have to cover a large spectrum of things.
I just got cynical about it all eventually as nothing seemed to work for me but you may be different. It all becomes about pain management rather than eliminating the pain.

I also saw a lady GP at the pain clinic who did acupuncture but i had to ask to see her. I only found out about her on the internet and that she worked at the clinic.

You have to ask for so much on the NHS nowadays as you are not always told everything readily. Although reading on the internet doesn't make you an expert it gives you information and sometimes you have to push with the GP and be proactive to get answers. I tred a fine line with my GP who in the past has directed me to look up something on the internet but hasn't always been too happy when i have gone into her with things i have looked up myself. That is why i went privately at various points as she was not able to refuse me a referral to a consultant. Once directed by a consultant she had to act.

Rosemary X

Hi again Edwina
I have been in touch with Bertie/Badger on this forum who set up the UK Facebook group. She has said that a couple of ladies from the Facebook Group who live in Sheffield and Doncaster are willing to contact you by personal email. They are in their 60s.

Bertie also says that you would get more immediate support by joining the Facebook Group and a mixture of help and advise. Ages range from 17 to 82.
I will send you a personal message on here in a minute.
Rosemary X

HI
Just saw a post from Edwina about her rectal pain. I'm so sorry that u are suffering and can certainly relate.
I wanted to say that Baclofen/ Valium combo suppositories inserted rectally, have helped me.. altho not complete pain relief it takes it down a bit.. currently I only use them lying down, as my PT has released many trigger points and the suppository will no longer stay in long while I'm upright.
Everyone is different in their situation and progress etc.
My combo is 4% Baclofen and !0% Valium I believe.

I also used Dilaudid rectal suppositories ( a strong opiate) for some time.. They helped also,probably more than the above.
I haven't used them for awhile, as I now have a pain pump with Dilaudid in it.
I would love to go back to the suppositories , as the pain pump only helps minimally, . my issues are a bit different, and I probably was not a great candidate ...Long story)

Anyhow those two suppositories may help.. Keep in mind the Dilaudid ones can be constipating, tho not a much as an oral med.

Hope this helps.. Some folks also only use Valium, which is another option.