There is currently a lot of work going on at National level to develop and commission services for persistent pelvic pain. The Pelvic Pain Support Network is co-ordinating this and members of our community have spoken at some of the events and workshops that have taken place this year with more events taking place in October this year. We have been asked about what patients want from a pelvic pain service. It would be useful to have your thoughts and views on this.
What do you want from a pelvic pain s... - Pelvic Pain Suppo...
What do you want from a pelvic pain service ?
PPSN_JudyBPelvic Pain Support Netwo
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PPSN_JudyB
Pelvic Pain Support Netwo
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diagnosis; info on where to access manual therapists - I found pelvicphysiotherapy.com owned by physiotherapist Maeve Whelan. It would be great if you will collaborate with this lady as she delivers training to physios across the UK and Ireland. I intend to train with her in the future so I can help my patients (once I get over my own debilitating condition). guidance on appropriate drug therapies; guidance on chronic pain management and mobilisation of the nervous system; such as David Butler and Lorimer Moseley write about. see Neuro Orthopaedic Institute and BodyInMotion for more details.
PPSN_JudyBPelvic Pain Support Netwo
Have been in touch with her and will be meeting her in Bristol at a medical conference next month. Also familiar with the Butler and Moseley chronic pain management writings having met the latter last year at the World Congress on Pain. Have you done any physio training yourself ?
Im sorry I havent been on here for a while, felt really down and unable to cope. I would like Pelvic Pain to be more widely known about, especially Pudendal Neuralgia and the treatment of it. It appears that there are hundreds of us in the country that are not getting any relief from medication or nerve blocks. I also would like more money to be put into the research of Pelvic Pain. ( I know this is a laughing matter but I can at least ask)
Regards
Marion
Where to go to get help.
A list if consultants who are qualified for, experienced in treating and capable of treating chronic pelvic pain and endometriosis and any pain resulting from this. I am having major problems trying to find specialists in my area who can carry out excision of endometriosis, a laparoscopic hysterectomy and also know about chronic pain from adhesions. I have a complicated history and can't afford to keep going to see different specialists privately, a list would be fantastic. I am aware of the BSGE site but there are no centres close to where I live. My pain also includes thigh pain that severely restricts my mobility and my pain clinic doesn't seem used to dealing with these kinds of problems. It has taken 3 years to finally have it confirmed that I have scarring over my genito femoral nerve and I was told to leave it as it is as more surgery may make it worse. Where do I go now??? A list could be literally life changing !! xxx
PPSN_JudyBPelvic Pain Support Netwo
We have a list of current centres on our website, there are only 6 in the country. Where do you live ?
Where are they?
The search box on the website pelvicpain.org.uk will take you to the page. Not all of the places listed see men and there are a couple of additional services that see women.
Hi, I'm in Wolverhampton, I don't think there is anyone close to me who specialises in chronic pelvic nerve pain. I also need a hysterectomy and my date had just been put back again, is there a specialist endo centre that also has specialist pain consultants that deal with pelvic nerve pain? Thanks
I would like to see much more training in place for both GPS and physiotherapists . It is taking much too long for proper diagnosis to take place. I would like to see much more research into cause and treatment of. this condition. Most of the people on the health unlocked register seem to have had problems with intense recurring pain with no hope of any relief
Added to the above I was misdiagnosed as having problemswith the pudendal nerve and after consultation with Mr Baranowski at UCL it was thought that the most likely problem was.damaged muscles in the pelvic floor. I did have a very difficult birth with my son 30 years previously and I had 2 ops. for diverticulitis 10 years ago
Hi, can I ask what op you had for your diverticulitis as I am suffering terribly with this problem. Have been admitted to hospital twice recently on a 999 with my bowel hemeridging so badly,together with pelvic pain I am at the end of my tether and really need some help,thanks, Jacky.
The thing that has struck me is the complete lack of coordination when it comes to basic diagnosis. The whole process of being passed around from one specialist after another, in my case at different hospitals seems such a waste of time and money. A clear protocol for a diagnosis pathway and treatment pathway between a range of specialists eg. Gynaecologist, surgeon, neurologist, physiotherapist would surely help to speed up treatment and be much more cost effective. Have NICE published any clinical guidance on the diagnosis and treatment of pelvic pain?
Unfortunately there is no NICE guidance on diagnosis and treatment of pelvic pain. There is a recently published Map of Medicine pelvic pain pathway.
Hi thanks for all the info do you know if there are any pelvic pain specialists,GP,support groups in the southwest devon? thanks
Unfortunately the South West is one of the areas nationally where there is no provision but we are working on it !
Any improvement for us poor souls in South West. Not just there is no treatment, there is general ignorance!
I found NICE guidelines on Chronic Pelvic Pain updated Feb 2012 on the web. I extracted the pages on PN showing diagnosis, investigations and treatment options. I bypassed all the other pelvic conditions as they weren't relevant to me.
Then I had to take this to my GP to give him a kick up the you know where, as knowledge is power!
uroweb.org/gls/pdf/24_Chron...
These guidelines are from the European Association of Urology ( EAU). Our charity (PPSN) had input into these.
Hi there, I stay in the glasgow area and have been seeing a specialist bladder, bowel, and pelvic pain physiotherapist for the last 3 years she has completely changed my life by the treatments she performs and arranged for me to see a gynaeocologist and colorectal consultant. A team approach is used where they consult with each other and discuss with me a treatment plan for managing my conditions. I am at the severe stage of multiple pelvic problems, bowel, bladder and abdominal adhesions. Have endured 13 surgeries over the years with each doctor saying this time it should help pain how wrong were they!! now surgery is too risky and I am Taking a cocktail of meds, and treatments for severe pelvic and abdominal pain. I have only just had definitive diagnosis from my team after 30yrs of trying. I have just had first round of vaginal botox for levator-ani syndrome only been a week will post how i get on. clearly changes to diagnosing patients must be reviewed also a review of having to go to more than one hospital for various treatments at present have been to every hospital in glasgow!! Not ideal when you live with chronic pain.
I would like for pain management doctors to be more aware of endometriosis and pelvic pain in general. They know more about back & leg pain than they do pelvic pain & it's incredibly frustrating. They have nothing to offer except for pain management courses, "nerve pain" drug therapy and nerve blocks. None of these things have helped me - seeing as the pain management course was geared towards people with chronic back pain & mobility problems. The drugs, such as Gabapentin and Pregabalin don't work & so I'm reliant on pain medication instead. These pain specialists are so busy trying to get me off the pain meds, but are offering nothing in return. They don't seem to realise that I've been in pain for the past 30 years, suffering all this time. I just wish that they would listen to women who are in pain & not just put it down to "women's bits".
Nella,
We are working very hard on this and the education side of things with medical students in Universities ( Leeds Uni this week and next ) and also with continuing professional education for pain specialists, gynaecologists on a daily basis. Fot the first time this year we have managed to bring people with an interest in pelvic pain from various disciplines together from several parts of the country in an ongoing project. I see signs that things are changing. We always need patients to help with this, so please get in touch if you're up for this !
in reply to PPSN_JudyB
What do you need me to do?!?
All sorts, attend events, contribute to education work with students and continuing professional education: this is with a wide range of health professionals as mentioned above. We also develop ideas via e-mail and telecon calls with patients and health professionals so there are lots of ways of getting involved.
in reply to PPSN_JudyB
At the moment I don't think I'm well enough to attend events - but any contribution I can make via the Internet, I'd be happy to help. Living with constant pain is difficult - when you're trying to get people to understand that it's not your fault. I've had so much blame dumped on me over the years I have had to grow a thicker shell...but even that sometimes gets pulled to pieces. Let me know how I can help - my email address is salisbury.endo@gmail.com I have a website also - which is in need of an update & links need going over...it's antonia-boyton.net
Looking forward to hearing back from you. A x
Will be in touch.
in reply to PPSN_JudyB
I would like to help with this educational work too. If I can be of any help I would gladly attend events and be a contact via email etc.
Laura
Laura,
Great, can you e-mail me at info@pelvicpain.org.uk please ?
Yes, I have been treated with Nitofurantoin for Inter Cytistis taking 50mg each day for a month precribed by GP. Finished this now but today had a painful flare up when I could not pee despite drinking water etc. the pain was horrific and my husband could see my face colour change with each spasm. I worried I'd have to go to hospital as I had to do before and only given Nitrofurantoin again. Now take AZO for urinary pain which helps.
I have acute pain often in the right side of my lower back and this ocurred today afterwards. I seem to have bad reflux too.
I really thought I was on the mend but don't know why or what happened today very scary.
I want a scan or at least an examination to see what's really wrong.
I have been diagnosed with moderately severe arthritis in both my hips also.
I'm 69 and try to walk each day even if around the garden.
Hugo3596 in reply to
Don't forget the men too please 
Knowledge and a system that believes the patients and takes their experiences as credible. Plus a timely response. I told my doctors i knew it was adhesions over a year ago, but only this month did the doctors for surgery, with great hesitancy, to release both my ovaries and fallopian tubes. Skilled doctors is also important. Plus accessible information that offers alternatives to just taking pain medications.
Have you had this surgery recently ? if so do you know whether they used any adhesion barriers ?
Yeah. Have had it recently. Don't know what barrier they did use a fluid to prevent their redevelopment
I know. Someone above mentioned it, but a more joined up approach to treatment. I mean, my pain doctors were doing one thing and my surgeons another, and there was no collaboration at all. Pain doctors focused on nerve damage and the surgeons on my adhesions. It was like I was two different people. Not any consideration to the fact that they were brought about my the same problem. Danger is it relies on the patient to inform each of the teams of the others thoughts and plan.
PPSN_JudyBPelvic Pain Support Netwo
In these complex situations it really is essential for patients to make sure that the doctors they see have the relevant information to hand. The system isn't set up to do this. This is why I have copies of all my medical records. I take copies with me. The doctors I have seen would not have been able to help me without the information I have given them.
in reply to PPSN_JudyB
I agree. It can seem pedantic but I am currently going through my old gynae records to dig out what I think is relevant for my next consultation. My records are vast and there is so much garbage in there from doctors who did not have a clue what was going on and doctors have a habit of selecting the garbage. I know from bitter experience.
I would like to see the up to date NICE guidelines on treatment of CPP, I would like a list of all possible treatments there are out there for this especially when there has been no diagnosis of the cause of pain (inc gynae and skeletal back issues). Some form of help to cope with the fact that I am in a great deal of pain no one knows why despite the procedures and tests I have had done and the medications I have tried with all the side effects that I have had to cope with. I know there is only so much you can put in a leaflet on this condition but could there be a leaflet made on CBT techniques especially to cope with this issue?
Mr Vic Khullar at St Mary's Paddington is doing amazing work to help women with short pelvic floor syndrome. Is he on your list? Mr Digesu is working with him and offers Botox for pf spasm. How do we get this news out to women who have been misdiagnosed and are still suffering as a result. My GP doesn't understand my condition, despite letters from my consultant. How do we educate GPs on this condition? My own GP accused me of being "on a crusade" because I wouldn't give up on not having a diagnosis for my lifelong vaginal pain and bladder dysfunction. I saw many expert consultants and doctors including urogynae and pain specialists before finding Mr Khullar. Why does it have to be so hard to get a true diagnosis? I have been suicidal at times in the past because of my condition and pain...and the denial by medical professionals that there was something wrong with me (because they didn't understand/felt helpless). This makes this a life-threatening condition. Something needs to be done to make it more visible please.
A faster triage type system to group patients with a view to more patient centred approach.
The patient with minimal disability who can still work a little is likely to benefit from physio and medication first. The Pt. who has severe adhesions and complications requires fast scans etc and ideally lapararoscopy as delay in treatment can affect outcome of possible surgical intervention. I feel history is important here keeping funding in mind and realistic goals. So faster assessment of a realistic outcome and the best form of treatment to help.
I would like NHS England and throughout Britain and Europe and Worldwide
to have more education for GP's hospital doctors, universities, medical students.
and nursing students. Pelvic pain is not taken seriously and mostly goes undiagnosed for years, or maybe never, regardless of pain, suffering and the impact on the sufferer's life due to disability, being unable to work or take part in social activities. it is also very isolating. I hate it when Dr's refer to an undiagnosed condition as ' chronic pelvic pain' as the diagnosis when no-one has even bothered to investigate. Pelvic pain sufferers deserve and are entitled to a diagnosis, the same as any other medical condition. I would like a roll-out of a clinical pathway for all Gp' s neurologists, gynaecologists, etc. so that they are expected to follow and apply it to all patients. At the moment it is financially unsustainable to keep going back to GP's and Doctors with the same complaint over and over again sometimes for years or being referred to pain management without a diagnosis. Pain management would be more effective and beneficial for the patient who has a scientifically proven diagnosis rather than a 'possible diagnosis' Also having unnecessary tests that come back negative and then being discharged without any further investigations being done. If you had best practice standards it would prevent patients being fobbed off by doctors who just don;t care. it would be best for the patient and more cost effective for the NHS or medical facility if patients were expected to have the most appropriate and right investigation done and diagnosis within a reasonable time-frame.
I would like my doctor to at least act like he cares. He will tell me he knows another colleague that can put me in touch with a pelvic pain specialist, but it has been about 4 months and I have reminded him several times. I have only got promises, but no action. I don't know where to go and who to see. I take fentanyl 100 patch, morphine for bt, gabapentin, cymbalta. I also take 2 lorazepam 1mg. I have to get those from my primary care and that is the only thing that seems to help with the nerve pain. I need my lorazepam increased to 2 mg and I need four of these for desent 3 out of 10 relief. I hate doctors, for thier non caring attitude.
I would like to have one location which would include all approaches-surgery, prescription meds including pain meds, physical therapy , emotional help, alternative therapies, imaging on site, support groups. And access to an online service for scheduling appointments, refills, advice, etc.
I have had problems in my pudendal area for nine years. Was diagnosed in Houston with Pudendal Nerve entrapment. Unfortunately was told there was nothing that could be done for me. When I became suicidal because of the pain I was given Narcotics that at least made life bearable. Five years later I am still in pain but fairly well controlled by my pain doctor. It seems that in the US there are more men than women with this condition but opposite in UK. I am not sure whether my condition is unusual but I know exactly when my problem started I am thinking of going back to doctors to see if in last four years any progress has been made in treatment. Spent many frustrating years looking for a cure only to be told nothing could be done. Almost went to France (Nantes?) for surgery only to be told that there was a good chance that I would have the surgery and condition could actually get worse,
Multi agency, holistic approach with access to a wide range of therapies. As previously mentioned, an increase in the number of physiotherapists trained in manual therapy. Workshops or groups offering the opportunity for those with similar conditions to meet. Easy access to appropriate diagnostics without having to argue the toss because we don't tick the right boxes. Oh, and how about waiting areas that are more user friendly to those with sitting pain. Thank you for asking.
I would like incorporated into the policy that the assessor of 'pelvic pain' must complete extra training for the assessment of pelvic pain in both male and female patients. They should receive training in the clinical assessment which should include a peripheral nervous system examination of the effected area. Order the most appropriate diagnostic tests regardless of cost i.e. MR Neurography or MRI 3Tesla, as in the long term this is best practise for the patient and saves the NHS money in the long term if the patient is diagnosed quickly. At present neurologists do not assess patients with peripheral nervous system pelvic pain at all. Patients tend to have a central nervous system examination for a peripheral nervous system complaint. Patients preferably should be assessed by a doctor of the same sex. Patients should remove their clothing and wear a hospital gown, like in the good old days of the NHS. A chaperone should be present regardless if the patient and doctor are of the same sex to ensure best practice and support the patient. Only then will we get the standard of care that has been missing in the NHS for a very long time.
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