Hi there, a newbie here!Has anyone been on the LINK pain management programme at National Hosp for Neurology, UCLH? It is my final option!

After 16 years of chronic pelvic pain following a vaginal hysterectomy, I find myself at the end of the road in terms of treatment. Dr Baranowski does not think there should be any further medical intervention. I have. Been offered LINK, 6 consecutive Mondays.

I did INPUT at St Thomas in 1998 which was valuable psychologically, but I am in REAL pain, lost my teaching career & relationships.

Ideally I would like an end to the pain!

Does anyone understand please?

25 Replies

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  • Hi

    What does LINK stand for?

    I truly understand what you are going thru, its nothing short of a nightmare.

  • Hi there,

    Thank you for getting back to me. I was unsure what LINK stood for, so checked the National Hospital for Neurology & Neuropathy website.

    The programme is now called COPE, This is what they say

    "We also run a pain management programme called COPE (Changing the Outcomes of Pain Experiences) which is led by our psychologists with our pain management physiotherapists. It is an outpatient, cognitive behavioural-based group series of sessions. Similar pain management programmes specialise in low back pain and pain of urogenital origin. "

    I believe that it is specifically for pelvic pain, pudendal nerve entrapment, bladder & bowel pain and finally urogynaecology.. I have undergone tests in their many departments, and various treatments.. I feel that my pelvis has been pulled apart causing so much pain, I would like to be rebuilt!!

    I am aware though that if I am not "accepting" of my pain, and still want a cure that they won't allow me to do the course..

    I want a cure really, I'm sure we all do!

    Who wants to accept this debilitating pain when it wasn't there before the hysterectomy.

    Thank you SO much for listening xx xx

  • Hi Suzy

    I can't believe anyone accepts pain, especially when its chronic and who in their right mind wouldn't want a cure! That statement is like a red rag to a bull! It make me very angry. Of course they would probably say that you can't be angry too.

    My pelvic pain is in its eight year now unfortunately. Mine started when I had a routine smear test.

    What pain do you experience and what treatment have you had and basically are you worse now than you was 16 years ago. I am sure,even after all of this time, I/we might be able to give you some guidance/help.

    My theory is that we all need to be rebooted like a computer and start again.

  • Hi

    I'm sorry to hear that you've been in pain for so long. Don't give up on the idea of a cure. I too went on the pain management course at St Thomas' hospital, but two years later found out that I had endometriosis, had an operation that removed calcified blood from my ligaments and felt loads better. I had many pain free years, although sadly it's come back, but that's another story. Like you I have no relationship and I've given up work now too.

    I haven't been on the course you mention, but I see it's based on cognitive behavioural psychology. They did a version of this with us at St Thomas, but I was there a few years before you and I don't think they'd cracked it yet, I've never felt so patronised in my life. If done well and on a one-to-one basis I think it can be very effective for many people. There can be no harm trying, but if it's not your cup of tea or if they do it in a group and that doesn't work then don't give up try something else.

    When I thought pain management was all I had left I devised my own pain management programme. I went to see someone privately to learn self hypnosis/ relaxation which was the best thing I've ever done. That really helps me to deal with muscle spasm. I have a banana chair which is another life saver, and I can relax in that. (www.bananachair.co.uk) I've also had lessons in meditation from a yoga teacher which is similar. I went to see an NLP practitioner and he did some weird 'timeline' thing which I thought was silly but made me give up the anger I had for some of the terrible things the orthopeadic surgeons had done to me when I was mis-diagnosed. With a physio I worked out muscle fatigue exercises to do in the pool as my muscles get exhausted so quickly and I've gradually built up my stamina.

    Maybe the best thing I've ever done is to get a puppy three years ago. Now I have to go and and walk every day, come rain or shine and now matter how I feel, so I have to keep a modest level of activity going. And she's lovely to have around.

    I have a friend who recently went blind and became very depressed, but she's really turned a corner and told me that now she focusses on what she can do instead of what she can't do and it's the best advice I've heard in ages.

    A course may be able to point you in the right direction and give you lots of new ideas to put into practice, but there are lots of other things you can do too and some of them will help, you just have to find what works for you.

    If you go on the course, it would be really interesting to get some feedback.

  • Thank you SO much for taking the time to read and reply to my postings!

    It is just wonderful to find a place where I am accepted, I don't have to justify or prove my pain. You are all "feeling" it alongside me.

    I don't feel so lost and alone anymore.

    Thank you everyone!

    Gentle hugs, Sue xx xx

  • Suzy I know what you are going through. I've also lost my teaching career & marriage. And I do really understand (here we all do) how hard it is to live with an invisible pain, having to justify or prove your pain. But having a fulfilling life again is possible. Is not about accepting pain, but about accepting change so you don't become a victim of the circumstances. I'm not saying that is easy, but it is possible.

    Don't give up in the search of what works for you!

    Best wishes

  • Dearest MariaZ,

    How wonderful to find a reply to my message today.

    Especially today!!

    I was thinking earlier that if I don't really get some control soon then I am going to end up in the grip of real despair!

    Then I found your message, a light of Hope and Genuine Care!!

    Thank you for taking the time to connect and offer a hand of friendship & understanding.

    I hope someone can do the same for you today!

    Warmest wishes, Suzy xx

  • Dear Suzy,

    It makes me really happy to know that my little message is helping you (it boost my energy too). I have found, and still do, a lot of support from other patients' words, so I know exactly how you feel.

    There is something I love about your message, you use the word "control" and it is exactly what is all about. There's nothing worst than the feeling of being in the middle of the ocean being pushed by waves and currents, unable to control where you are going or even where you are. I've been there and to be honest I am afraid to be there again one day.

    But there is a way out, it is possible to regain the control of your life (only as much as possible, some things are not in our hands). It has helped me a lot to use a diary, to plan and pace activities, and to focus on my achievements, even the smallest ones. I felt like a child at the beginning but it has worked and, now, I feel more in control, I can do things I thought I couldn't do any more, I have some social life again... a life again!!!

    All the best. Lots of love.

  • Ps> I am Spanish so excuse my language mistakes. xxx ;-)

  • Thanks! I have found lots of things that work for me too, and I focus on what I can do instead of what I cannot do. And, yes, I do feel angry sometimes, and grief for lots of things I have lost; I do not accept pain and still have the hope to find relief. Anyway, I like your approach a lot.I think I have to put a puppy in my life!

  • Socks, I was thinking of getting a puppy myself. Slow walking is one of the best forms of exercise for our pain, it relaxes the muscles.

    I can't seem to shift my lower burning back (around the coccyx area) I had a massage the other day, and although it was nice she kept massaging in that area and now I have a major flare up.

    So no sitting or standing for me, until the pain subsides. Its so annoying as I never had this pain until a couple of months ago, its progressing and hate it big time. Just when I was beginning to manage my pain this comes along!

    Had blood tests yesterday to see if an anti-inflammatory process is taking place in the body as I react badly with any form of drugs, costicosteroids, HRT,a/b's thrush etc.

  • Thank you all for your answers & questions. To give a bit more info on my situation in answer to jacquieb's question about my pain.....here goes!

    My pain is 16 years old. It followed a vag hyst in 1994. During the surgery (lithotomy position), my non prolapsed womb was butchered, dragged out of a tight vagina, my legs were allowed to fall too far pulling pubis symphysis apart,& sacroiliac joint disjointed.. Once pelvis was rebuilt by wonderful physio MY PAIN, which I awoke in recovery with continued with a vengeance! I persevered with my teaching career for several years & underwent various intrusive procedures, but no relief..

    I get shooting burning pains up & inside my vagina like a stabbing knife, my pelvic organs feel like they are wrapped in red hot barbed wire, it is painful always on my right side. It is almost impossible to drive, sit, stand for length of time,lie down, open my legs to go to the loo or climb in the bath. I suffer with double incontinence as my pelvic floor muscles are wrecked.

    Only recently (2008) it was suggested that my pudendal nerve may have become trapped during surgery & Dr Baranowski has been investigating, and I have had 2 transvaginal blocks, 2 x-ray guided, and 2 CT guided blocks. I've been taught to self catheterise. I have been toilet trained using bowel biofeedback. I have received excellent treatment! But I am still in agony.

    I have asked for nerve surgery, neuro transmitter, anything else in the "box of tricks"!

    What they have offered me is a place on their pain management programme. I know this is end of the road stuff.

    I want a diagnosis & cure.

    They won't allow me to take part in the course until I fully "accept " my pain.

    The course is 6 Mondays at 10am in London. It is a 3 hour trip from Dorset, about £65 a ticket. Travelling and escalators in the Underground cause so much pain and anxiety.

    Maybe I should buy a banana chair, Socks, and set myself up with my library of books from years of cure hunting, and stay at home!

    I am still in pain though, on 80 mgs of Zomorph. It's not a fulfilling life is it?

    Thanks SO much for reading all of this..

    Sue xx

  • Sue,

    Did you receive my private message ? I sent it to your inbox ?

    Judy

  • Hi Judy,

    I have searched everywhere, but have been unable to find your private message, sorry.

    Would it be with my regular emails, or somewhere else?

    I found our conversation from 5 days ago, but nothing newer than that.

    I will keep looking!

    Thanks for caring,

    Sue

  • What was the message 5 days about ? I mentioned that I live in Poole in the message I'm referring to.

    Judy

  • Hi there

    Your situation sounds grim, I do feel for you. And I hope you do find a cure.

    I was in contact with a pain management unit last week, as I need some information about treatment.. I got a note back with various information, which included the following:- '... there is evidence that opiate-based medication can have a tendency to increase pain hypersensitivity'. So, you could seek an expert opinion about the Zomorph. The evidence is on the iasp-pain.org website somewhere.

    I didn't know it was possible to have your sacroiliac joint disjointed. I wonder if this happened to me. I had terrible back pain and ended up having a lumbar epidural and manipulation under a general anesthetic which made me much, much worse. I would have been pulled around like a rag doll when the underlying problem was actually calcified blood around my uterosacral ligaments and other tissue.

    I understand the comment about CBT and pain. That's what I thought when I was on a pain management course. It's relatively easy to take a bad situation like redundancy and try to think of it as a new opportunity and something positive instead of failure, but I'm not sure what positive things we are supposed to think about pain. Perhaps things like 'oh great I don't have to clean the house today because I'm in too much pain'? However, if they are running such a course then I hope they have feedback which suggests it helps most people attending and I doubt it could do any harm. Being told you have to 'accept' your pain is like someone in jail where there's been a miscarriage of justice being told that they have to admit they are guilty before they are allowed parole. Some of them will say they're guilty when they're not to avoid a few more years in jail and I can understand that choice. Will there be any harm done if say you accept your pain, but you don't believe it?

    I don't think anyone should ever underestimate the body's ability to heal and I don't think you should give up on your efforts to find a cure. It sounds like your pain has resulted in lots of other problems too due to poor muscle condition etc. This was certainly the case for me. I started doing muscle fatigue exercises in the pool a year ago and built up really, really slowly, spending no more than about 10 minutes in the water initially doing one minute of exercise, resting for a minute, etc. After a year I'm now able to swim quite a long way. I had a phsyio who happens to work with people who have ME and he treated me in a similar way in terms of building up my exercise regime. If you're going to do anything it's important to have good support and advice as it's easy to feel worse rather than better by doing too much.

    The pudendal nerve theory seems worth pursuing.

    Good luck.

    Tina

  • Dear Suzy, I was so sorry to hear how long you had suffered with this pain (don't own it - it's not yours!) We just endure an unwelcome visitor who we wish we could throw out. I disown mine, have had it since the late 1980s. It started so gradually, that I can't really remember exactly when it started, but noticed a cutting pain in the late 1980s in my left groin after sitting for a long time - especially after sitting at a TYPEWRITER, ong before I owned a computer. It gradually grew more insistent, more constant, more widespread, and more unbearable and by 1990 I was in St. Marks Hospital, but they found nothing amiss, and threw me out with a prescription for carbamzapine and amitriptylene. which I was allergic to - and had jaundice. I don't think the doctors knew anything about pelvic pain - whatever that may be! It's a big cover-all description, isn't it? Eventuallly I got to the Pain Management at the Ntional. Had two x-ray guided nerve blocks and two CT ones with Dr. Baranovski, but the were sadly ineffective. I was offered the Monday 10a.m. Course, but really didn't think it could help me in any way. I live much nearer to London than you, but I am 80 and felt I couldn't make the 10a.m. start for six Mondays. The Physios only offer some exercises, and people talk about their experiences, which I didn't feel I I was up to travelling each week, although I do feel isolated, that nobody really understand why I can look well but experience such severe pain and horrible symptoms. They did send me a list of SelfHelp Resources - which I how I found out about this site. I do sincerely sympathise with your sufferings, and don't know what to say to help. I find I am better when I have company, I think conversation is a real pain distraction.

    T.V. also, interesting programmes take my mind off it, and I enjoy reading, although that's not so goot when I am really bad. I try to keep occupied, but get very tired, and think that it exhaustion from pain more than age! One does feel out on a limb, and I don't think that my GP is t all aware of how I am, as I seem to always react with cheerfulness when I meet peole - and sometimes find myself asking the doctor how how he is today! I must get off my bottom; sitting her is excruciating. My best wishes and s;ympathies with your situation. Sheilam

  • Hi Suzy

    First of all I would like to say how sorry that I am that you are suffering the sort of pain your described. Its hearbreaking and am sure all of us "feel" the pain you are experiencing, its like nothing else and it never seems to eases or go away. Its nasty.

    The stabbing pains you are experiencing are due to the nerves, pudendal, who knows, that feed into the vagina that's for sure. The red hot vagina is also due to the same thing., Normally the pattern is muscle spasm (maybe due to using the muscles) burn, pain, sensitivity. Do you have sensitivity in the vagina too? I suspect you do.

    From my experience the stabbing was the first signs of nerve damage/irritation, when I took Amitryptyline it went away but I was than left with constant pain after that and still have it to this day.

    I take it that the nerve block injections wern't successful? Altogether I have had eight of the wretched things, including one with botox, and am poorly for weeks afterwards with the hot sweats, burn and depression, boy was I down, but thought that maybe the steroids would help, it did the opposite. Did D Baronowski carry them out in London? I had five with him.

    I will never accept my pain, and anyone who has this sort of pain will never give up, I am sure, as life becomes a chore, bleak and down right miserable.We all need answers or something that will ease our pain.

    I continually search for answers and my treatment over eight years has now amounted to nearly £20,000 its barbaric and its not me who has benefitd thats for sure.

    Did you sue the hospital for negligence? I often thought that I would do the same but it would have been hard to prove.

    If you feel that the course will benefit you that you should go, but personally after having cognitive therapy it was a waste of time and money. How can you change the way you feel about the pain, if you are in pain you are in pain for goodness sakes.I understand that on occasions, you might be thinking about something else and the pain sort of drifts into the background for a bit, but its still there.

    I too am still searching for answers as I hate my condition and hope that maybe one day I will find the answer and help the millions of us who are suffering.

    I won't give up and hope that you don't too, so please just remember that you are not alone.

    All the best and with love

    J

    x

  • Thank you SO much for taking the time to read and reply to my postings!

    It is just wonderful to find a place where I am accepted, I don't have to justify or prove my pain. You are all "feeling" it alongside me.

    I don't feel so lost and alone anymore.

    Thank you everyone!

    Gentle hugs, Sue xx xx

  • Hi Suzy

    Let us all know how you get on if you attend the course?

    Keep in touch.

    lol

    j

    x

  • Hi Suzy,

    Hope this year will see improvements for those with pelvic pain. How is the course going ? hope you can make the meeting on Thursday 19th Jan at the Orangery. Please let me know as we need to know numbers for the buffet which is at 6.30pm !

    Best Wishes,

    Judy

  • Hi there. I was accepted into and completed the LINK / COPE Pain Management Programme u talk of at UCLH. It helped. Lots of CBT, physio and mindful meditation. All 8 women in the group had, like me, long term chronic pelvic pain. I have had Interstitial Cystitis for 7 years. My fight to continue looking for answers for my IC continue and will never stop. My pelvis is unhappy, inflamed and in pain for a reason. My bladder bleeds for a reason. I WILL find that reason. I have never been so determined in my life. But in the meantime I needed something other than chemicals to help me 'cope' with the pain. For this alone LINK was perfect, eye opening, hopeful, encouraging, uplifting, reassuring. I strongly recommend it. I don't agree 100% with heir theories on chronic pain (that a lot of it is in the mind / unneeded pain messages continuing on a loop to the brain - like a computer with a virus) However I DO think this is the case for some people. Just not for IC patients. So please do go on the course if you can.

    Emotionally the first week or 2 were very hard. BUT WELL WORTH IT in the end!!

    Good luck. LINK DOES have some solutions that help you 'reconcile' with the fact the the pain is here 'today'. Tomorrow is another day to be dealt with tomorrow. As a group we preferred the word 'reconcile' to accept. I will never accept my pain. But today it is with me. It is not my enemy (that thought will only make the pain worse)

    .... you see the kind of stuff we learn?

    Sounds like childsplay but it is all very enlightening. I feel lucky to have done the course.

  • Thank you so much for taking the time to answer.

    I am pleased to have finally "met" someone who has done the course.

    You make it sound encouraging and worthwhile, which is what I have really wanted to hear!

    I am in the process of weekly counselling sessions with the NHNN Pain mgt psychologist. It is helpful to talk one to one, and I appreciate her time.

    I think that I am nearly on the course!

    Paperwork seems to take ages from one dept to another.

    Thank you for getting in touch, I really appreciate it.

    Warmest wishes for our own battles too,

    Sue xx

  • That should say ......... "your own battles"!

  • Hi there,

    I have been suffering from severe intractable bladder pain and frequency and severe pelvic pain since traumatic childbirth. I have been passed from one consultant to another due to lack of successful treatment (for 8 years) and various diagnoses have been made like interstitial cystitis, detrusor instability and fibromyalgia. It was not until recently that I self diagnosed my condition as pudendal neuralgia and a referral to National Hospital for Neurology UCHL was made.

    I have not been happy with the treatment that I have received there. When I suggested that I may have a pudendal problem, the Pain Specialist did not agree. I had to push for pudendal blocks. The xray guided pudendal block was a distressing experience and caused me considerable pain for a few days afterwards. No sedation was used and the consultant "stabbed" me about 10 times in an already painful area. The distress caused by my first block caused great anxiety during my second CT guided block. I nearly passed out.

    The urogynaecologist there decided to put a suprapubic catheter in an already excrutiatingly painful pladder. This caused severe bladder spasms. I contacted the department several times to have a consultant review but was told she was too busy. Even the nurse specialist and the district nurse were shocked at the level of pain I had during catheter changes. As I could not get an appointment to see the consultant, I wrote a letter to the consultant explaining my disabling pain. She wrote back and told me that she could not see me and that I should arrange a referral to another urologist. Absolutely appalling !!

    The urogynaecologist first agreed that I would benefit from pudendal nerve decompression based on MRI findings and agreed to make a referral to Prof Carlstedt. Then on a combined review consultation with the pain consultant, they both decided that nothing would help - not decompression surgey, pelvic floor physical therapy, sacral neuromodulation or botox in the pelvic floor, without any clear explanation.

    I was advised that there was not much more that they could do for me and the only thing that they could offer me was Ketamine and the LINK programme (psychological support and pacing advice). I am sure that pacing can work for the majority of pains but not neuropathic pain and "acid-like" burning pain as your bladder fills. No behavioural modification will improve this continual severe burning pain felt as the bladder fills. Neuropathic pain is very difficult to manage and keeping patients on considerable medication and suggesting that LINK programmme is the "last stop" is so demoralising.

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