I today saw the pain management consultant at the London hospital where I also see the gynae/pelvic pain specialist at the endo centre who is fantastic and does everything she can to help. I also see the urology team at the same hospital. I have previously suffered with endometriosis and now suffer from adenomyosis and IC. On my third lap last week my gynae decided to carry out another cystoscopy to see how the IC was. The good news was that there was no endo seen, adenomyosis looked better (on long term zoladex) but the IC was one of the worst cases she had ever seen. This was disappointing as I have had 7 months of Gepan therapy which hasn't helped at all. I then went into complete urinary retention and had to stay in hospital until Saturday evening where I was still having to use the fitted catheter. I am seeing the urologist tmw at an emergency appt to discuss having lidocaine instilled into the bladder although this now looks unlikely as I have been treated for a urinary infection since Monday. Both the urology and gynae team discussed me having a neuromodulation device fitted long term to help with the urinary symptoms and chronic pelvic pain/pain from the adenomyosis although the Zoladex works well for the adenomyosis pain. Everyone whilst in hospital following my surgery was lovely, but the consultant today in the pain clinic was awful. I had previously been seen there but the consultant I saw was dismissive of my pain and I asked to be seen elsewhere to my GP. He then referred me to UCLH where I was then told there was at least a 7 month wait. In desperation my GP referred me back to my current clinic to see another pain consultant. I was understandably nervous as I feared the same thing could happen again. She was beyond rude and asked me what I exp her to do. I was taken back by her attitude especially as my notes weren't there and she didn't bother to do a history. I explained that the neuromodulation was suggested by the urology and gynae team to which she replied I'd have to wait until I get seen at UCLH. She's put me back on MST and oramorph for the pain but hasn't altered my nerve based medication. She is going to see me again in two months where I fear she will discharge me from the clinic. I feel as though I have been given up on by the pain team. I am seeing my gynae in 5 weeks time so can discuss things with her there and also the pain consultant said she's going to speak to her too. Out of desperation I rang UCLH to find out where I am on the waiting list and they've said I should be seen by the end of January which isn't too far away although I've been waiting since July. I do mindfulness meditation (headspace app) and yoga as advised by my gynae consultant and it helps not really with the pain but more with the stress side of everything, I keep a pain diary, I try and do as much as possible but it's so difficult when I am having to go to the toilet every 15 minutes despite following a fluid restriction plan. I have also tried acupuncture which helped with the back pain but not the pelvic pain. I also follow the IC diet. I am now at a loss and feel that the pain clinic have given up on me and UCLH will do the same and I will be left will a catheter long term which is a real concern. I don't feel this way about my gynae or urology teams. Has anyone any advice for me please as I feel beyond desperate after this afternoons clinic and the rude consultant. Has anyone ever had an interstim/neuro modulator for IC and/or chronic pelvic pain/urinary symptoms? Any advice gratefully appreciated
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You poor lady, it may be worth you joining the COB. Forum,they have a helpline with lots of advice, I was seen at NHNN last week, which is the Pelvic pain part of UCHL I waited seven months for my appointment.
They are the only pain clinic devoted to pelvic pain I beleive, the consultant I saw was lovely, pleasant, a lady. I saw the male consultant privately for an initial diagnosis, his bed side manner has a lot to be desired but he is very thorough.
I have seen the uro lady privately who is part of the team , she was also pleasant. I think chronic pain consultants in general have a very thick coated skin, maybe they have to to be able to do the job I dont know, but we shouldn't be made to feel like you do.
Also,when we are in pain, we are so more volatile, I was once a strong person I am a shadow of my former self these days.
Regards your bladder, look up a Professor Malone-Lee, I am in contact with someone who after a year of treatment is almost pain free from her bladder problems. His treatment is quite controversial though as it is long term antibs, the pain clinic suggest I go and see him.
My daughter has been seeing Prof J M Lee for a number of years. The clinic test your urine properly for infection, unlike at the GP surgery or even at the lab. I can also confirm that he does suggest a/b's to alleviate the symptom. When infection is under control he does suggest coming off of them, but as soon as the symptoms appear he suggests going back on them.
Thank you for your reply! I spoke to my mum when I got home who was angry at the way I was treated as no other speciality as this London teaching hospital has ever made me feel like this. I think you may be right about them being thick skinned which seems a shame as the anaesthetists I've had for surgery including last week have all had a lovely bedside manner. I'm just going to focus on my urology appt tmw and hope that the consultant there agrees with the neuromodulation and my catheter being removed tmw.
I'm due to see the male consultant at UCLH pelvic pain clinic and have heard mixed reviews about his bedside manner. The hospital for neurology and neurosurgery is the same place where I would have to go for the neuromodulator to be fitted and as its a 7 month wait on average for the pain clinic I'm guessing I will be waiting the same for a consultation so surgery if given will be late next year unless I can be seen urgently.
I'm the same, I'm not the same person. I come across as strong in some ways but deep down I have become fragile which I'm definitely feeling at the moment. I feel stuck in the life I have and can't imagine it being any different. I have always wanted children but with the gynae issues including adeno this seems an uncertainty and being single too doesn't help.
I will definitely look up the specialist you mention and see what the urologist thinks tmw. Have you had many appts at the UCLH pain clinic? What is the support like, do they give you a treatment plan and tell you to go away for a year or do they give you a nurse to contact for any support/queries?
I'm not sure the antibiotics would help tbh as my urine has been thoroughly tested at the hospital for infections and they've always come back clear. My bladder showed the typical inflammation and bleeding during a cytoscopy which is typical of IC which isn't caused by bacteria. The current thinking is that it may be down to an autoimmune response. My GP took a sample of urine on Monday from the port of my catheter to send away for testing as it had come back positive for infection and he also wants to make sure the amoxiclav medication I'm on for the next 7 days is the correct one to use. I've got to go back in 2 weeks to be retested as there was a lot of blood in there and also in my catheter bag. Usually my GPs wouldn't have been so thorough but I'm guessing it was because I saw a trainee GP and I'm post surgical. He was lovely though and didn't make me feel as though I was wasting his time which always puts me at ease. It's such a shame though that many of us always seem to be having to fight to be heard by a small section of the medical profession that are so uncaring. Luckily the other consultants I see aren't like that
When I saw the Dr privately he was extremely thorough and really knows his stuff, he just tells you as it is, my husband liked him, I thought I was going to be under him at NHNN, but I think he does more private than NHS.
I was offered nerve blocks that I could of had done quickly, but I turned them down for now as I have Pudendal neuralga with PGAD and want to give it a bit longer, as I am better than when I had my private consult in February, as I no they cause as many flare ups as temporary help that they give some patients, the Dr I saw was in total agreeance with me.
When you see them a nurse is present also, if you think it's going to be a wow room etc it's not its a broom cupboard with no windows, and you walk through the secretary's office to see the Dr, and I thought that just sums up Chronic pain and what we are thought of.
I am having a telephone review in six months to see how I am, and if I want a nerve block, they are the place to go with the problems you have, they have access to all the latest. Professor Malone-Lee is highly thought of by them, as I wouldn't be surprised that you don't have an infection of the bladder wall, a lot of uros don't believe in such a thing, but he is getting results and Australia and other country's are starting to take note.
Infections of the bladder wall are not picked up in normal UTIs, he tests in a different way. I have been under a uro/gyna that follows more or less the profs phylospohy but I am going to see the Prof as I want to go to the top. My bladder four months ago was 7.1mm thickened which is very thickened, lots of white bits in my p, smelt horrid, cloudy. After a month of antibs my bladder went down to 2.5mm as good as a young healthy bladder, but I am still showing signs of infection which is normal.
Go with a list of questions to the NHNN, and if you end up having a Nuro........then they are the best people to do the op. If I have to end up having PN surgery I will go to France as they no more than NHNN.
As my family tell me, brush yourself down and keep going, perhaps your mum can go with you, as I am certain you are treated better when you go as a two, when ever my husband comes with me to appointments I am treated very different to when I go on my own.
I saw your posy and wanted to know who the uro/gny is that you have been seeing? Prof Malone Lee has been forced to close his clinic and i am now desperate to find someone following his research.
Did you see him? Find he was any better than your regular Uro/gny?
No I'm not being treated by him, is he at UCLH? I only attended the pain clinic at UCLH once as the one I was attending at another London teaching hospital was linked to the endometriosis centre and provided both a better plan and had a better understanding of my pelvic pain from the endometriosis, adenomyosis and IC. I don't see a urogynae as I'm already under an endo specialist so it was decided that a urologist would be best and they would stay in contact as all of my specialists are at the same London teaching hospital.
Is it for bladder pain/IC
you wanted to see a specialist? Is it possible to maybe book in to have a private consultation with him? He could then perhaps suggest one of his colleagues who practices on the nhs. Or email him? I know consultants are extremely busy but they often do respond to emails or ask their secretary to reply to you
Unfortunately he has been closed down completely. Both NHS and private work. The medical council felt his treatment regime with antibiotics was too extreme.
No I've never seen him as I'm not at that hospital in at barts nhs trust for all specialists (endo, urology and pain management). Finding a urologist is hit and miss but that's the same with all specialists unfortunately. Bladder pain or IC shouldn't be treated with antibiotics as its not caused by an infection. I'm on prophylactic antibiotics because I also get retention and frequent infections with the IC which makes things worse. Medical treatment must always be evidence based and if there is evidence to suggest that the treatment is harmful or is simply not warranted then it can simply be withdrawn. It might be a case that you need to speak to your GP and ask to be referred elsewhere to see if they can suggest another treatment plan for you
I did some googling on the prof last night to see if any media coverage had been released about the closure of the clinic. I did find a newspaper article although I'm not sure if I can post on here or name the paper but can send it to you via a pm if needed. I had read previously about his approach using antibiotics but wasn't convinced it would be suitable for myself or some other groups of patients. It would appear the closure of the clinic is a temporary one so that a thorough investigation can be undertaken as many of the antibiotics used in the treatment programme have been shown to cause harm to those taking them. This could be for a number of reasons including dose to high, patients not able to tolerate them etc. It may also be that these patients had other undiagnosed conditions so until an investigation has been carried out no one will be able to comment.
I haven't seen any evidence to suggest that he has been suspended from practice and he still has an active profile on the Bupa website so that sounds encouraging although if he uses the same treatment privately he may have decided to not see patients for the time being and concentrate on research until the investigation has concluded.
He isn't a urologist according to his profile but a specialist in geriatric medicine and undertakes research into UTIs which affect this age group frequently. Have you been diagnosed with a bladder condition - IC, bladder pain syndrome or chronic UTIs? I'm just thinking it might be best to get a second opinion from a urologist, keep a very detailed pain and symptom diary which you can take with you to this appt or your next F/U appt with your current urologist and it might help guide treatment options for you. I hope this helps, if you need anything please post here or sent a private message
Thank you so much for your thoughts and care on my behalf, I really appreciate it.
Today I saw Mr Ronald Miller a Urologist specialising in Chronic cystitis. He has said I have Urethra Syndrome and he wants to do a Cystoscope and cauterisation of the bladder lining. Have you heard of this? He said it would cure what he believes is a bacterial infection that has gone into the wall of the bladder. Initially he said it would all be back to normal within two weeks but when pushed admitted it may take some months.
I just find it incredible to have gone from no bladder problems ever to this in two months.
He also knows the Proff and said his licence to treat has been suspended while he is under investigation which will take at least 18 months. He can not carry on with his research either during this time. He was due to retire in two years so that is that.
It sounds as though your appt was a lot more productive and you feel happier. It's 'positive' that you have a name for your condition as being treated for something that hasn't been given a name can be very difficult and it almost validates your pain. I haven't heard of cauterisation for the entire bladder lining although it can be used to treat Hunners ulcers in IC. Cystoscopy is used to look at the bladder to aid in making a diagnosis and also carry out treatment, I've had it for both and it is interesting to see see inside your bladder. Is it a one of procedure or would it have to be repeated at some point? Have they given you any information leaflets to read? You can sometimes Google these procedures and get info from Bupa or other nhs trusts so you know what to expect etc, but I know not everyone wants to know about it!
The bladder is a weird organ and I think most of us feel that way about it when problems strike and won't clear up but thankfully in most cases there is a plan
I had wondered if the prof had been suspended but wasn't keen to speculate especially as it's someone's career. It is a shame that the situation in the clinic has resulted in it being closed temporarily especially as he does seem to be very well liked by his patients but hopefully he will be able to retire with his name and research cleared
I hope your surgery goes well and I'd really like to hear how it has helped
He sid he would knock me out, do the Cystoscope and procedure at the same time and also nerve block the area to help recovery. I will not be allowed to leave hospital until I can wee independently.
I am going to do more research to make sure that it really is the right way to go. I don't want to jump from the frying pan into the fire!
Dear limemarmalade -- I found your post online and was wondering how you were getting on. I had the exact same procedures with Dr Miller - with the exact same diagnosis and it didn't help one bit. I had similar symptoms to what you described earlier in the thread. I'm now being treated by Professor Malone Lee. I was wondering how your operation went. Thank you
I did not have the operation. I felt it was very aggressive with an enormous down side, potentially. I am also being treated by the Prof but I am also seeing Vik Khullar. He is exploring other possible factors that may be having an impact. Particularly a problem with my back and my prolapse, which although minor could be a culprit. Hope you are improving. x
That was very smart of you. It was the right decision. I guess dr Miller is a surgeon first and therefore his first port of call is something invasive. I'd say I recovered maybe three / four months after with no discernible difference to the UTI. How is the Prof's regimen working for you? I'm having a good response although the ABs are taking a toll on my stomach, but it's worth it. Thank you for the recommendation of Dr Khullar. I'll also try the pelvic route with Helen Keeble first - some threads here swear by her results. Wish you a healthy 2016.
I'm happy to be seen by anyone there as long as they help me in some way even if it's a broom cupboard!
My bladder isn't thickened and my urine isn't cloudy or smells offensive in any way, it's just normal looking urine. It smells offensive at the moment but that's because I have an infection due to the catheter. I will definitely look up the Prof and his treatments although I suspect he treats chronic bacterial cystitis using the antibiotic regime but I could be wrong.
I agree we do get a raw deal because we suffer from chronic pain and it reminds me of how I and others were treated in the early 90s when CFS/ME was mocked by the medical profession even though mine started after glandular fever. Luckily I recovered after 10 years and specialist input from the London teaching hospital I'm under currently. It would be lovely to think that maybe in time we will be helped and treated sympathetically in pain clinics instead of having to get all our support from our other consultants
Does the pain specialist you saw have any experience with patients with pelvic pain I wonder ? Those that do should be working with the other disciplines you mention. We had a meeting at the Department of Health/Public Health England yesterday with gynaecologists, pain specialists, colo-rectal, urology, physiotherapists, psychologists and patients. The long patient journey and referral was the main issue. In some parts of the country the disciplines work closely together, in other parts not.
I don't think you should be biased/pessimistic about your forthcoming consultation, it won't help, so go with an open mind. I would have your questions noted down as a reminder so that you cover everything.
I saw my urologist today who was lovely and agreed that pain management was definitely a good option but I should be seen at UCLH which hopefully will be the beginning of next year according to the secretary there. In the mean time she's advised that I stay under my current pain management consultant which my gynae also agrees with. I don't know if she's had much involvement previously with pelvic pain but I'm guessing by her attitude and lack of useful input probably not. My bladder treatment has changed to long term antibiotics, change in bladder instillations from the gepan, starting elmiron and also changing from gabapentin to pregabalin, and learning how to self catheterise although currently have my fitted one still until I have my appt with the urology nurse bought forward which will hopefully be next week. If that doesn't work then Botox will be used probably as a combination treatment before considering the sacral neuromodulation. All in all felt listened to and helped just like I do when I see my gynae. I usually do have an open mind but I've had a week of hospital appts daily including tmw for my zoladex injection which after the lap last Thursday with a three day hospital stay have taken it out of me.
I do think that although pelvic pain might not be their specialist area pain management teams do need to learn how to speak to patients in a way that isn't belittling or rude. All of us no matter what the cause of our pain deserve to be treated with kindness and understanding. Luckily all my other consultants do this and we get on very well. Maybe this is something that needs to be incorporated into postgraduate training for anaesthetists?
Thank you very much for your suggestions Judy I feel a lot more optimistic today, yesterday was just a very depressing day after the negative consultation
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Undiagnosed chronic pelvic/abdo pain
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