Hi all a update from last week at the pain clinic firs it was a waste of time going I was asked to bring all medication and a list of things I have tried myself he had a look at everything and told me I have tried all the things he would give me Tens Machine one of many items I have bought myself I asked him about the nerve blocks and was told it doesn't work for everybody and dident get offered it that was the end of that subject I also mentioned about the cocktail of medication and was told he has never heard of that and wouldn't try it so he is sending me for physio I just feel you are getting past from pillar to post I have lost all faith in the NHS now when I think about all the money I have paid in and can't get the help when I need it hope everyone else has had better luck than I this pain is torture I just don't know how I am going to go on any longer you don't get any relief from it the lucky thing is I don't get it when lying down but can't sleep for all the anxiety it is causing
Thinking of you all Janebee x
Written by
Janebee
To view profiles and participate in discussions please or .
The Pain Consultant yesterday said to me that "nerve pains come and nerve pains go, and sometimes we never know why"., great. I've never had a formal PN/PNE diagmosis, though that's obviously what I've got.
He advised me to stay with the meds(which I haven't been on long to be fair) - he wasn't very keen on nerve blockers or the decompression operation. That's all very well but I don't see that meds that's ever going to restore much if any of my lost quality of life.
I'm thinking of consulting a urologist next, though it will probably just be yet more money down the drain. Y'day was the 6th consultant visit I've made, at £150-200 a shot it isn't cheap). I wished I live in the US where there are interesting developments. It just seems hopelessly backward here, especially our beloved NHS.
My comment can go both to janebee and haydock. First, it's valid. Nerve pain does come and go. But I've figured out that, for me, if I do things four days straight that mean I'm sitting, I'm most probably going to set off a nerve flare and end up in bed 3-4 days just dealing with awful pain.
On a positive note, I've been going to a pain management Dr for 2-3 months now. He put me on norco 10/325 and nucynta. Norco is every four hours and nucynta is twice a day. It is extended release so it keeps the effect going in my body round the clock. So, here is what I have noticed especially this past month. And you all know by now the pain/ brain relationship. When something can diminish the pain signals and keep them from going to the brain, the pain does become less. My meds have been effective in managing my pain, the pain signals to my brain are less, therefore my pain has been less.
My TENS unit was doing it to some extent by distracting the mind but wasn't as effective as the two meds.
I'm also able to take a very low dose of zanax twice a day if I need it. The more calm I am, the less my muscles spasms and the vaginal, rectal, abdominal pain is less.
The way the gov is making such a big deal about the opioid crisis and many docs not giving their patients the meds that help them, I feel very grateful that I found the Dr that I have.
Hi so glad you got a doc and get some relief I am only on a a medication at bedtime and I need some med for during the day as that is when all the pain starts I need to lie flat or stand to get some relief get helps.Janebee
Where do you live, Chica1943? I'm wondering if there is a budget issue (ie, postcode influenced) which has allowed doors to open for you on pain relief. I've similarly got absolutely nowhere with my GP or pain consultants, who say they've tried everything when I bet they haven't....and pain "management" (yeah right) that isn't pain "treatment". Can you tell me more about your Norco 10/325 and Nucynta - are these brand names, and what's the dosage/how often, etc? I'm wondering if you're in the US not UK! Thanks
Thanks for the good wishes, which are appreciated. When I commented about the US I was thinking of Dr Dellon and Dr Prologo, who apparently have had a lot of success, the first with new approaches to surgery and the second with Cryotherapy. I'm now more aware of the limitations and the danger of accepting claims at face value.
I'm now actively pursuing the French option, which is much more practical for me anyway in terms of distance and of cost
Please ignore that comment I made. I meant it in a general sense that you see claims of success for PN/PNE treatment but there doesn't to be much by way of independent verification. In fact if I lived in Atlanta I'd be joining the queue for treatment by Dr Prologo
oh dear, its the same old story, things are not easy at the moment with the nhs, they are so short of money, that cuts are being made and unfortunately chronic pain conditions seem to be at the top of the list.
stand your ground and tell you gp that you want a second opinion from a different pain clinic, you will have to travel but you might be lucky and get someone who will try different cocktails. you must really battle to get the help you need, have you hypnotherapy for help with your sleeping, things will be a lot easier for you if you get the right sleep, are you on amitryptaline as that helps you sleep as well as helps with pain
"oh dear, its the same old story, things are not easy at the moment with the nhs"
I got pretty much the same out of a Pain Consultant I paid £200 to see yesterday, very little.
I'm thinking over the possibility of getting the freezing the nerve treatment in Atlanta. It would be a hell of a journey to undertake, would gouge a huge hole in my savings, and would be a one shot effort. I couldn't afford to repeat it, But I feel that if I do nothing it's just going to get worse
Hi Haydock looked up the freezing and you can get in the UK it gave you a list of nhs hospitals that do it if you can get it done in the U.K. It will save you loads of money and you don't need to get it done in the USA janebee
Thanks Jane, Dr Prologo's treatment by freezing the nerve apparently, hopefully, results in longer term relief; rather than v short term freezing. I'm going to email him and see if I can get some answers about cost and success of treatment
Hi Haydock, I'm so sorry for your pain issues. Please, please be careful about cryoablasion though. When I was finally diagnosed with PN my team of doctors weren't exactly experts on the disorder. I had multiple nerve blocks with full relief that only lasted about 12 hours, and was told the next step was cryoablasion. It made things worse! Suddenly I couldn't even wash myself without excruciating vulvar pain. My doctor said he "thought he went too far down on the nerve" and tried again 5 months later, which made it better but still worse than it was before the first cryoablasion. After that I was told to try and find a specialist because he didn't know what to do. Luckily I had one that is located only a couple of hours from me in the states, and he has been working with me. He said there have been VERY mixed results with the cryo, and unfortunately many people have the same outcome I did.
Thanks for your reply Cassandra. I've been in contact with Dr Prologo, and if I get good responses I may well consider flying to Atlanta. I appreciate your caution. There really seem to be no really safe options in this field.
I feel my condition is getting worse quite quickly - especially as regards the burning urination. I can't see the gabapentin doing much for it, though I'd be well pleased to be proved wrong.
I've got one shot, financially, at doing something.
Many patients find relief with cryoablasion, but Dr. Prologo is an interventional radiologist and there are many that perform the same procedure. If that's the route you choose, you might want to research if there are any close to you before travelling. Also, it worries me that Dr. Prologo claims such high outcomes when the overall success rates are actually much lower, and do not last forever. I found an interview with him about the procedure, here: blogaboutpelvicpain.com/?p=...
The comments section is very informative including some of his patients and their experiences with him and the procedure.
Take your points, thanks for for the link. I have emailed him so I'll see what comes of it. It's probably not a practical idea for me anyway.
But I don't know where, if anywhere, his procedure is carried out in the UK.
Neuromodulation might be promising, but the same applies.
I'm definitely thinking of going to Nantes
I'm sick of the UK, I've had too many practitioners telling me the pain's in my head - and wanting me to go on cognitive behavioural therapy or take mind bending drugs
Wow, I'm so sorry you have been treated that way. You deserve better responses than that. You're pain is real and your suffering is real. And you're not alone.
It's the British way, a backward approach covered up by don't complain, "musn't grumble"; it's all in your head really; it's mind over matter and you don't really matter
To hell with them, I've decided to go to Nantes now
Haydock- can I come with you? I’ve been reading everyone’s responses, but I don’t get involved as I am quite shy & also in a lot of pain. After 4 yrs I have tried everything & endurance & supporting all you guys from the sidelines is all I have left. Please post a regular update so I can watch your progress.
My name is Deb. A lot of you probably know me for those that don't. Today is my anniversary. It's 17 years today that I am suffering. I was scheduled for cryoablation procedure with the Atlanta Georgia doctor we call him DR. P. I thought we weren't allowed to say doctors names and treatments like such on here. Anyway. Make sure it's covered if you are seeking it to be paid by insurance. They told me my procedure would be covered and that Dr. P would fight to get it covered if it wasn't. That isn't what happened. I booked my trip and 3 days before I was to leave on the plane I was told my insurance didn't cover it and I would have to pay for the procedure day of service. Now, my entire trip was booked. So, I said what about the doctor proposing to my insurance company that it is medically necessary and getting it precertified and I was told that I would have to call my insurance company and do the precertification myself. Now, anyone who has worked in the medical field knows that the doctors are the only ones who can deem a procedure medically necessary and get it approved. Patients cannot do this. So, in the end I lost a lot of funds. But it just so happens that I'm using these tickets now on a procedure that is covered by insurance and I can't wait to get it done. I hope and pray for the best of you. If there is something I've learned over the years is that if a procedure isn't covered the procedure and doctor should also be questioned. I lost thousands of dollars that I didn't have this way. I'm made mistakes that now I've become an advocate for myself and many friends that have PN with watching out for doctors that are in it for the wrong reasons. Not saying that that is why DR. P is doing this. I just want everyone to be safe out there. Too many friends of mine and myself have lost lots of many on treatments that didn't work or made us work. Prayers for everyone on the site. God bless us all. Deb.
You too. All the best. I'll keep you posted on the procedure I go for. I don't want to give false hope yet. If it works I'll let you know. I've been suffering for so long. I wouldn't steer you wrong. That's a promise. I do my research and make sure it's a legit procedure. I just worry about things making me worse. So, I'll keep everyone informed ok. Thank you and God bless you and everyone on the site. I pray for all of us on here everyday. I say the Rosary daily and keep us all in mind. I'll say one for you. Deb.
Gabapentin really helped me. After 5 yrs of “opioid” therapy I had an excruciating flare up and Gabapentin was suggested but not by my pain doc. He agreed to prescribe it for me, however. I had bad bad bad side effects but I kept going with the Gaba. It took a year to get to 3 X 800. But it works for my pain. I am not diagnosed with Pudendal Neuralgia. In fact, the grand pubah pain specialist I saw at Johns Hopkins was emphatic that my pain could NOT be nerve pain because of the way I described it. I will seek out diagnosis again next year ( if I can get some insurance). I live in Atlanta.
Thanks for that, that's encouraging. I'm on 600 times 3 of Gabapentin plus 20mg of Amitripyline. Fortunately I haven't experienced any side effects yet. I'm honestly not sure what effect this is having on pain/discomfort levels - though amitrip seems to be doing wonders for my sleeping, which is a great relief. I haven't been taking these meds long enough yet to judge. My Pain Consultant was pretty helpful - he agreed that it was nerve pain and the symptoms were compatible with PN
Having this.....whatever it is, I feel like someone in a creepy movie, and I’m The Creep! I hear children laughing outside and people are having parties. I’m having.... PAIN. LOL!
Hi andreax I do a sleep hypnosis every night and I am on 100 mg of Amitryptaline I just feel you are getting passed from pillar to post and when I was going I got all hyped up thinking I am going to get some help to ease this pain and what a shocker it was it dident matter what I said he had a answer he even mentioned at one point it could be all in my mind how can pain as severe as this be all in your mind I thought he would have tried some pain relief to see if it works it feel like you are just waisting there time goodness knows how long I will wait for a appointment I waited 4 months for the pain clinic
pregablin and amitryptaline and good old fashioned bloody mindedness, it sounds strange but you have to come to terms with it and accept it,it doesnt mean you have given in it means that this is the new you, once you accept it things seem to get easier somehow, it took me a long while maybe 5 years before this happened but it will at some stage. deep breathing is also good it relaxes the muscles etc and being tense all the time will only make the pain worse
I too manage my nerve pain with pregabalin and amitriptyline, caused by a prolapse repair and mesh. I had surgery back in 2012 for a prolapse of the bladder and rectum and a tot (transobutrator tape) to support the urethra as I had mild stress incontinence.but my life was hell after all this as no doctor or consultant at that time knew of this horrific pain that had been caused by the surgeon. now 5years later pain still but the meds really help some what.
So sorry for all the pain you are having I had gyn surgery and I blame that.for all the pain I had a hysterectomy and the surgeon stitched up my urethra tube and I was rushed into hospital with severe pain got Ct scan and was told the tube had been stitched and I might lose a kidney thankfully it dident come to that. Janebee
I did physical therapy for my pelvic pain and it did work but it took a good while. I would say at least five months for me but it may work faster for you. I wish you all the best.
to right it does but managing the pain and having some quality of life is what we all strive for, but nerve pain cannot be treated with tramadol, slow release morphine, I tried them all until the surgeon in London on the NHS removed my mesh and got me on the two meds I mentioned earlier. I carnt say I am pain free cause Ime not, far from it but learning to live with it as we have too is hard especially when the burning and pain over ride the meds
Thanks for your reply I am going to make a appointment to see the doc to see if she would let me try that do anything to relieve this pain Many Thanks. Janebee x
Hi chillijava just back from the docs and asked for the pregabalin for the pain during the day and was told no as I am already on a tablet that works in the same way and that is amytrip and it would do me more harm than good so I asked her if I could get acupuncture and was told the government have run out of money and that is not a option now I said I can't believe in this day and age that there is not anything available for chronic pain and was told yes she said wait and see how you get on with physio another waisted journey. Janebee
ami and pregablin are 2 different kinds of pain relief, in my experience only the pain clinic doctors allow you to be able to use various types of pain meds at the same time. i was also told that gps cannot prescribe certain meds together and also the higher doses, unfortunately many gps are not au fait with pain meds, so you need to go to the pain clinic at the hospital to be able to get the "cocktail" of meds you need.
i had a gp like this and changed gps to get a better service, my new gp is still not 100% up to scratch on pain meds, but does try to help me if he can
Hi chillijava I was at the pain clinic and the consultant there said he had never heard of that dident offer to try it he is sending me for physio you can't win making patients suffer this severe pain 24/7 I think it's shocking I paid NI since I was ws15yrs until I was 60yrs and had to retire due to ill health. Janebee
Hi chillijava I went to the docs again on Friday and told her I can't take anymore of this pain I am in and out of bed all day and it's making me so depressed and she would need to give me something and she gave me pregabalin 25mg and I have to go back and see her in 4weeks well it is a step forward Janebee x
Hi chillijava I have to take one twice daily she said she will start me on the low dose to see how I get on with it and I have to go back and see her in 4 weeks I can't believe it because the last time I seen her she was
Adamant she wasn't giving me it .at least that is one step forward I said that she would need to give me something before I leave the surgery I don't know how I said that because I am not like that it worked and I am over the moon she is taking it serious. Janebee. Can
thats fabulous, you go girl, and that is the right way to take this medication, twice a day and starting at a low dose and then titrating up, please let me know how you get on
Hi chillijava how are you keeping hope your pain is getting a bit easier and your physio is helping I would love to hear from you to see how you are doing. All my love. Janebee xx
Hi I am so sorry you are not to good and you are dealing with other problems and have not been to your physio please keep me updated on your progress and I wish you all the luck in the world you helped me so much I don't know what I would have done if you dident give me all the advice you gave me. All my love Janebee. Xx
Hi chillijava I hope you are felling better and get back to yourself again just a wee note to say I am thinking of you and hope to see you on hear soon
thanks thats very nice of you, i am ok but struggling with pain at the moment, ,i have a lot on my mind at the moment, so havent been on here for a while
Oh chillijava my heart goes out to you hope you get some relief from your pain after going through that surgery maybe if you can get back to your physio you will get some relief Thinking of you all my love. Janebee. Xx
Hi chillijava Hope you are feeling a bit better and your pain has settled down My daughter phoned the hospital as I have not heard back from them as I was being referred for physio and not had a date she updated her saying there is a multi disciplinary being put in order to see what would be the best treatment for me so that is another step forward I just can't wait to see if I can get some relief from this pain Thinking of you all my love. Janebee. Xx
Hi chillijava hope you are feeling better and getting some relief from your pain I have been thinking about you as you really gave me loads of advice and help and I won't forget that.I seem to have a problem getting onto the sight when I click on communities there is no pelvic pain and when I search for pelvic pain it's taking me on to another pelvic pain sight can you please help with this problem I hope you don't mind as I don't know who else can help me with this I have got to go onto notifications to get on and it is old ones that it is going onto I hope you don't mind all my love Janebee.
Hi chillijava sorry to bother you I managed to get onto the sight I don't know what happened but i lost the sight and couldn't get on back to normal again hope to see you on the sight soon all my love Janebee. Xx
sorry to disappoint you but i am rather worse at the moment, not really sure why, but i am quite downbeat about it all, hence this is why i have not been on the site for a while, hopefully, its just another one of those things. as for the site try going into communities at the top and getting into the site from there, thanks for thinking about me
Oh I am so sorry to hear that I pray that you get some relief from your pain soon after being through all the surgery I will say a prayer for you all my love Janebee. Xx
That's supposed to say everything Andrea. I just started to feel the effects of my vaginal diazepam and I can't even see straight. The things we do to get out of pain. Please God help them find a cure. Xoxo. Thanks again Andrea. Deb
I completely understand. Today I find out the results from my neurologist on whether or not it's autoimmune, possibly MS or something else effecting my legs. Please keep me in your prayers. Thank you Andrea and lots of prayers coming your way again. Xoxo Deb ❤️
Sadly janebee 5 here is no 'cure' for chronic pain and no medication that will stop it completely. When your pain clinic doctor said that you were on all the medication he would suggest it might well be true. There are only a certain number of medicines available.
I am curious about your mention of ' a cocktail of medication'. Do you mean you are taking so many drugs you would like to reduce them ?
From my experience we all juggle a variety of medications, heat/ ice packs, injections, pacing and the rest. But are never pain free. Just good days and bad days( or weeks).
Emotional / mental attitude is hugely important. If I let my pain take over and engulf me then it gets worse and my life becomes more difficult. I have felt like you in finding it hard to believe that there is nothing else on offer. But over all my treatment on the NHS has been fantastic. I e certainly got out far more than I ever contributed.
Hi thanks for your reply when I mentioned a coktail of drugs I was meaning two pain relief drugs on the same day I am only on one pain relief drug and I take at bedtime and I have no pain relief during the day as that is when I have all the pain I use vagicool ice packs and tens machine for the pain I have sent away for another tens machine and it is for chronic pain so hope to get some relief from that and I have bought six cushions for pelvic pain and none of them help you just get to the stage you will try anything to get some relief thanks for your reply and hope you are well thinking of you. Janebee x
I bought vagicool ice packs from amazon you get the disposable covers for over them I wrap mine in a piece of kitchen roll as they are really cold I don't know if that's the ones you are looking for hope this helps Janebee xx
Oh sorry for commenting on pain on this forum. I don't suffer pelvic pain but joined the group to help a friend. But chronic pain is the same wherever in the body it's located.
Hi everyone hope you are all well just back from the doc and I was telling her about the multi disciplinary and the dr that will be there and she said you might find there would be a psychiatrist there because this pain can be all in your head see iflI hear that one more time how can pain this bad be all in your head so she has upped my pregablin to 25mg each week unto I am on 100 mg a day along with amytrip 100mg at night so I will see if this helps. Janebee xxi
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Pelvic Pain
Chronic pelvic pain 
Pelvic pain
