What's anyone's experience of a pain clinic? Has this been helpful and solved problems? I'm waiting for an appointment after a lot of procedures and not really having got anywhere.
My GP has given me Gabapentin to try in the mean time and said this is the sort of thing the pain clinic would give me, I don't know if anyone has had success with this? He said I've started on a low dose, been taking it for two days but no relief as of yet
X
I'm sorry to say that I haven't had any success with the 6 nerve blocks I've had for Pudendal Neuralgia. I recently met with two neurosurgeons who specialize in Trigemminal Neuralgia, which it seems that I have. I do a lot of research and have recently stumbled across an interesting and possible contributor to my conditions. It's called the Great Saphenous Vein. In addition, another very detailed article that relates to it. Just google: Chapter 13: Vessels and Lymphatic Drainage of...
This includes very informative and specific information relating to "Inferior to inguinal ligament" that you may find useful. I sure hope so!
This site is fantastic but I've recently also joined an American site which is purely for PN. They've recently started to have webinairs so even though it's in America you can join in. They have arranged for the first pudendal nerve meeting with professors which will be held in Maryland in September (not that I'll be able to go). Apparently a new type of MRI is being developed called MRN which will be able to tell exactly which nerve without having to prod you around. They are really ahead of the game there I think but do join. As I say, this site is great but join pna@pudendalassociation.org
as it's purely for PN
Take care
Morning Durdledoor,I was attending a pain clinic for quite some time, Despite numerous nerve blocks and other procedures that really haven't made any difference to my pain I asked to be discharged as I was under the pain management in London though I live in the Midlands. During this time I was prescribed pregabalin , which I knew was helping as I suffer from nerve pain in my vagina and rectum due to a prolapse bladder and rectum back in 2012. But at that time pregabalin was expensive to prescribe so my doctor changed me to gabapentin ,but as you have to build the dosage up to the prescribed amount , my pain intensified and was back at the drs pretty soon after ,told him I cannot suffer this pain whilst I wait for the gabapentin to kick in, his reply was you haven't given it a fair trial so prescribed me pregabalin and have now been taking this as well as amitriptyline for at least a year and a half ,the pain doesn't go completely but helps me to have quality of life. Although I still feel this pain in my genitals daily I have come to live with this now especially after all I've been through over the course of 3yrs trying to get to the bottom of my pain. Its not understood why amitriptyline and pregabalin work on this kind of pain as they are antidepressants and anticonvulsants but they do. Nerve damage during surgery was the cause of all this for me but trying to explain this kind of pain to doctors is almost impossible as they think slow release morphine and tramadol etc would help but it was through miss el Neil top surgeon in London who bye the way didn't perform this surgery back in 2012 told me I needed to be taking pregabalin and amitriptyline to help with the pain I was in. I hope this has helped some what in your plight to get relief for your specific condition.
All the best
Thank you for your in depth response, that has been really helpful although sorry to hear of your ordeal! I have previously tried amitriptiline on its own with no effects but now at least I have some ideas if the gabapentin doesn't work, thank you x
Hi, just looking at your profile pic beside your name. isn't that close to Weymouth durdledoor,down in dorset. If it is I can remember as a kid going there.
Hi , I went to a pain clinic which involved steroid injections into my abdomen which didn't help and unfortunately resulted in weight gain and stretch marks. It also included physiotherapy and the use of ultra sound equipment and a tens machine and they did discuss medication and they did suggest gabapentin but i had to slowly come off tramadol first and the withdrawal symptoms were horrendous as i have been on tramadol for almost 2 years and so i just went back to my usual dose.Unfortunately none of the above helped I have now come to the conclusion that to make the most of the good days and deal with the not so good days ! Its hard but I'm only 18 and this has affected my life for long enough , its not gonna beat me i am gonna get on and enjoy my life the best i can. Good luck with your treatment i hope it helps you 😊 x
So sorry to hear this Jay, thank you for your reply. Are you able to able to work with your pain problems? X
Hi , I am in still in education and I had to change my full time course to a part time one , there have been attendance issues as some days I can't go in due to the pain and they threaten to expel me but I appealed and I am due to finish in June and hopefully start university in September which I hope I can manage . I take each day at a time and I will not let the pain rule my life x
After 6 long years, I have some relief.
To cut a long story short, I have been pushed from pillar to post with endomitriosis, different procedures for gynea and a femeral hernia,and now thanks to pain management I have gotten somewhere, I've been taking amitriptyline (25mg) since December with no relief, when I went to the clinic the dr told me to double my dose, I did that on the Monday night, by the Friday I felt a bit better, now I'm nearly pain free. He also said I could take Pregablin too, but my Gp has said to give the amitriptyline a few weeks to see how I go.
I'm the best I've been in a long while, hopefully they can help you too. X
Hi, I have been a patent at the pain clinic for 10 years. Not for pelvic pain they did not cover that at this clinic? I have botox in my back every 4 months as I have Scoliosis. If you get the right consultant try and get repeat appointments as the clinics are getting smaller. I found Gabapentin gave me terrible headaches so went over to Amatriptiline, good luck, please let me know how you get on, Jacky.
Thanks Jacky! It does seem that gabapentin tends to have a million side effects!
Gabapentin works for some there are others you can try. What's helped me the most gabapentin compounded in a suppository along with valium and lidocaine if you're male use them rectally. There is a pn closed Facebook group join that
Were you able to get the suppositories in the UK Pepper ? I would be interested to get some .Thanks
I'm in the USA but go to Facebook and join the pudendal hope closed group and ask that question. I would think any gyn or pain Dr could prescribe
Thanks Pepper I'll try that although my Dr and Specialist would not prescribe Gabapentin gel . I dont think they are as helpful here as in USA.
Hi, I have tried pain clinic but gave up due to long waits for appointments and procedures.
I finally went private, and though more expensive, I have a much better access to help,and timely treatments.
Gabapentin is prescribed for neurogenic or nerve pain and does work well. ( I take it).It may take some time to work.
I have PN pain due to entrapment by adhesions. I too like many of you have suffered from endometriosis,though now for more than 40 years with many surgeries - Laps with diathermy and laser, total hysterectomy, ovaries removed, bowel resection and ureter resected and bladder relocated.
I am now having PRF treatment on my PN and cluneal nerves every couple of months at WHRIA in Sydney. I have been recommended to have a nerve stimulator implanted, which I feel is the last resort.
I do take 1200 msg of Gabapentin at night, although it takes a while to work it does eventually.
The pain is also exacerbated by sitting! A very telling symptom of PN.
I have been on Gabapentin for years and I too started on a low dose which is the wise thing. I currently am on 600mg three times a day and I once tried weaning myself off and I found out rather quickly it DOES help me. Give it time and be willing to step up the dose slowly, I know easier said than done but it has gotten me through YEARS. I will tell you the dead give away for me that I was at my maximum dosage is I felt drunk most of the time, doctor said not uncommon feeling. It isn't the best medication for all but it has been a great help to me.
Good luck
I like your profile name beentheredonethat, sounds about right .Have you got the tee shirt ha ha.Pregabalin does that to me if I take another dose more than I should. the only reason for taking a extra dose is if I carnt remember taking the dose in the first place. Talk about memory loss.
Yeah I need the t-shirt !! The thing that really bothers me is so many doctors are stuck prescribing the same medications for everyone with certain symptoms and some medications just are not the drug of choice for some people. I am lucky to have a long term MD who works with me and listens to me. I am not pain free but I know I have been worse, that is some comfort.
Best of health to you.
Uro-gynae-neurology clinic in London - NHS
Pelvic pain
exercise to relieve pain
