After visited a standard gynae at Croyden and a rather rude neurologist at Croyden, I have been referred to University College Hospital at their Centre for interdisciplinary medicine. They have a whole team of people that specialise in pelvic pain - I had a consultation with a Uro-neurologist (that is the urinery system and the nerves in it). The whole team is made up of urologist, neurologist, gynae, physio, psychologist, anaesthesilogists (for the medication or nerve blocks). They offer a range of treatments depending on the problem. It's an NHS centre and anyone with pelvic pain can be referred there I believe, their pain management centre also has sub-teams for different specialties, but this one is particularly for pelvic pain. I had to wait six months for an appointment, but so far worth it, I found the appointment to be excellent, they new what I was talking about, asked all the right questions and they reassured me that they can help. I wanted to post as all the forums I first visited said that I would have to pay for expensive treatment in France, I mentioned to the nurse and she said that there is a lot of misinformation and that there are NHS services. I suppose it's about GP education. I think the clinic accepts GP referrals, but at least your GP can call them up to ask if it needs to be a neurologist that makes the referral. Here is all the information and links to the patient resources they recommend. These are resources that have been vetted by the team so they are sure they do not contain mis-information. I was pleased to see Headache i the Pelvis and Heal Pelvic Pain by Amy Stein on there, both found really useful.
This is what they say about the clinic:
The Pain Management Centre has pioneered the multi-professional treatment of pain perceived in the pelvis or abdomen. Four consultants and a senior nurse specialist form the initial assessment team and have close links to gynaecologists, urologists, gastroenterologists and colorectal surgeons within UCLH. We offer a comprehensive assessment and investigation where necessary which may include urodynamics, pelvic MRI neurography, plus diagnostic and therapeutic injections such as Xray, ultrasound and CT guided injections. Our close relationship with UCLH Endometriosis Centre means that women with painful endometriosis can move seamlessly from gynaecological care to pain management.
Our world leading pain management programme named Link is specific for those with abdominal and/or pelvic pain and runs three times a year for women and twice for men. Patients may be considered for a trial of sacral nerve stimulation for bowel and bladder dysfunction with our uroneurology or colorectal colleagues or for pain if indicated and within in context of our multidisciplinary team.
We work with health professionals from this centre and some of them attend events and National meetings that we organize. Clinicians from all areas of the country including the centres on the link below attend. The next National event we are organizing is in Bristol in October. The link below lists clinics around the country. We hope there will be more of these specialist centres around the country in areas where there is nothing at the moment. This is what we have been working towards for several years and we hope the situation is improving even though changes in the NHS are slow.
Expertise in some conditions is still very limited/non existent in the UK and in this case or when patients can't get a referral or don't make any progress, some go elsewhere. The EU directive enables those with such conditions to be treated in another EU country. In the EU, the country with the most expertise in the field of pelvic pain is France.
I too was disappointed with UCLH who despite being diagnosed with endometriosis by a lap and also adenomyosis which showed up on a scan, IC which was confirmed by a cystoscopy all by top specialists at a London endometriosis centre and urologists I was called a liar about the level of pain I was in. I was told I would be given physio, and to see a pain psychologist only. Despite waiting for these a follow up appt never arrived, no clinic outcome letter was received by myself or my GP. I rang up and they have no record of me attending the clinic or letter to by typed up from the consultant. I too was meant to be seen by Andrew B but was seen by another consultant. Luckily I was still under the pain clinic at the hospital which is attached to the endo centre so have stayed with them. Disappointingly treatment from a specialist pelvic pain clinic and the women's physio I see privately has told me that other patients of hers have or are receiving very poor quality treatment from them. I personally wouldn't recommend them as no patient with confirmed disease from laps and cystoscopies should be called a liar
Oh gosh.... You have all had really bad treatment by the team! Oh dear... I had such big hopes
66crusaider.... Yes, his bedside manner was a bit odd. He tried to tell me his hypermobility syndrome was worse than mine!........ So???? Lol if only his bum burnt more than mine too..... He'd soon be quick to help!! Lol
Is it impossible to ask for good, consistent, effective treatment?
I was being polite ...... appointment a total waste of time......my mother had a nerve block there with disastrous consequences......I turned it down........and ran for the hills as fast as I could.
I don't see anyone......the only place I will/would go is France we just don't know enough here ( in my opinion) , Professor Robert in France does not use the steroid part of the nerve block as he says it can cause more problems than it solves, with extra nerve damage and atrophy.
My mum is in a bad state.......they had to do an emergency supa pubic catheter as the nerve block caused her bladder to stop working and she was rushed in.......the care quite frankly has been awful.....they have discharged her saying they can do no more....they are supposed to be a centre of excellence and help people , but they gave up very quickly.....so she is just under the care of her GP and local hospital......there is no magic cure/button for this hideous condition......and possibly accepting that " helps" ........so many think getting an appointment there is like a golden ticket ......more like a bankrupt " woolworths" voucher ( in my opinion) ......there physios don't do any hands on.....they just tell you how to move......absolutely pointless.......an appointment there is approximately 6-9 months I saw Dr B with two days wait privately......no wonder the NHS lists are so long....sorry for the moan but I am "expert" warn out.😖😖😖😖😖😖
Hi, hope you are still a member of health unlocked cause I know your post was 3 years ago! Wanting to ask the hospital or clinics name and location in France? I am possibly needing nerve blockers and I don't want to end up worse than I am now! I hope you and your mum are doing better now.
I also not had good exp of London lot, dismissed 2 previous consults opinion that I had pne, tried to send my for obt internus injection, for slightly tight on into, I turned it down. Attended an intro to pain management workshop that I found depressing. Had to have physio and psych assessment to get on course, physio opening line was "You don't seem to accept that your pain has no physical cause" I was very rude 😡. Go with an open mind, but their flavour is "Pain is pain". They are very anti surgery and I found Curran quite a cold person, the last time I saw her I made sure she did an internal to prove no spasm internally. She was in a hurry to get to meeting and I was quite insistent,.... Lol
How does a physio help you when they are not hands on?? How would that work?
Both your stories sound very discouraging. I really don't want to waste my time seeing the UCHL lot if they are no help.... It's a long way for me to travel, and I have a young child to be looked after when I go.
Does anyone have any positive outcomes from anywhere else??
Don't lose hope suzysheep, there must be some success stories. Maybe not a miracle, but some successful treatment. I had a bad experience at my local hospital but I know lots of others have had very good treatment, so I can't say it is 'bad'. Have you tried Bristol? Xx
Sadly, I can only add my voice of doom about UCH Pain Clinic. Same as previously mentioned - hands-off physio and a clinical psychologist. LOTS of talk (both female medics) but very little tangibly practical or helpful to come away with. Physio teased me with saying "there's this amazing woman down the corridor who can do trigger pain - touch here and get referred pain relief there" etc....and I could not for the life of me get a referral. What did I have to do to get sent to all these amazing dept names - inc Functional Medicine that a Registrar elsewhere told me was avail at UCH...no use to me if no-one tells me about these services. The whole dept displays woefully bad knowledge of endometriosis - "severe" in my case. They shouldn't be handing out exercise documents involving core muscle or pelvic floor - for any patient none the wiser could do themselves serious damage if their endo was compromising that pelvic area. Was first referred to the dept by the 1st of two gynae consultant surgeons. Meanwhile when I got nowhere with the 1st surgeon I moved to the 2nd gynae who dangled the carrot with offering surgery then withdrew it 6 months later trying to suggest menopause might "cure" me.....both "top" gynae consultants therefore displaying equally questionalbe knowledge of the disease, I end up losing 2 years trying to get surgery out of them. All I can assume is they don't have sufficient surgery skill - what other conclusion can I make? Lots of wagging fingers from the Pain Clinic to suggest I'm copping out by seeking surgery, not to mention their view of pain relief medication as a similar cop out. The physio insisted "but what's the pathology?", as if the trans vaginal scans they conduct in the gynae clinic are the unequivocal and definitive guide to the disease - if I feel a pain elsewhere that's not located in the scan results, I must be making it up. Pain is pain - real or imagined! Surely a chornic pain clinic is supposed to understand that.... The upside and the downside of a teaching hospital, it seems - my local hosp with even less knowledge of the disease is at least patient-centred, yet the place I thought would deliver the best endo expertise.....they bang on about how evidence-based (!) and thoroughly researched it is, with all its impressive academic credentials apparently (current and former Presidents of BSGE are both gynae consultants!) and yet ironically in the process totally loses sight of the patient. What do they think they are teaching and learning for? Ineffective and dismissive experience with Natasha Curran with two trans vag scans with radically differing experiences. The 2nd scan was with the "top dog" whose bedside manner was so awful, right down to his 1950s bowtie, I couldn't get angry while he had a camera up my front bottom...detailed scan but left me so angry. By total contrast the very first appt was with the wonderful, knowledgeable, talented, God forbid sense-of-huour Dr Katie Pateman - who trained at my local hosp! Right at the end of that session, unprompted from me she put her arm around (OMG, personal contact!) and said the immortal line - "Don't be fobbed off about your pain - it's organic pathology" !! In your FACE, UCH Pain Clinic. boy, was that delivered by way of a warning. Don't care how academically impressive the place is - they can shove it. I suspect those gynae consultants are going to keep deferring patients over to the Pain Clinic by way of avoiding surgery - and I REALLY pity future endo patients unsuspecting of how the place works. I've had it confirmed since leaving by a different medic elsewhere that they are apparently getting more "conservative" about surgery - so yup, look out all you endo patients if you have lots of pain. You'll be getting nowhere....so get out while you can. I'm glad I did.
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