World Congress on Abdominal and Pelvic Pain 2015

[PPSN_JudyB]

Several health professionals and patient representatives attended the workshop at the congress organized by PPSN to update on research in the field. The workshop was very productive and the report will be on the website soon. Participants also attended the main congress presentations on the management of endometriosis pain, adhesions, pudendal nerve entrapment, vulvodynia.

[2cv1964]

Dear Judy,

Thank you for your post.

I would very much like to know a little bit more about what was discussed especially with regard to the overall knowledge of PNE - ie., are all Gynecologists aware of the symptoms of Pudendal Nerve pain and are they all going to be able to diagnose the problems in the short term.

During their long University training are they going to be taught about Pelvic pain in much more detail... I hope this is what was on part of your agenda at the Congress.

Look forward to hearing more details.

Sincerely,

[PPSN_JudyB Pelvic Pain Support Netwo in reply to 2cv1964]

This is an interesting question. Those who attend these congresses are likely to know the symptoms. This meeting is multi-disciplinary, meaning that it is attended by a combination of gynaecologists, pain specialists, gastroenterologists, dermatologists, colo-rectal, physiotherapists, psychologists. Generally there are just a few from each of many countries. At a guess there were probably 4 or 5 gynaecologists, pain specialists, physios, psychologists from the UK, a few more from France. ( Dr Labat, Nantes was President of the meeting )

The vast majority would not be able to diagnose this. It is not part of their training. In the Uk it is often physios who identify this. Physios have more input/training in pain than any other medical profession. Occasionally at a national gynaecology meeting there is a continuing medical education session which might include a 10/15 minute presentation on the subject but it may not address how to diagnose it !

[Hidden in reply to PPSN_JudyB]

How can we raise awareness of this condition with gynaecologists and GPs etc in general. I would like to get involved in that type of project. Maybe sending out information leaflets? I've got no idea and wouldn't know where to start, but am very willing. If we can raise awareness on a local level, enough that patients get earlier referrals to the experts that would be a good thing.

[2cv1964 in reply to Hidden]

Sueboo I too am very interested in this subject. How on earth can I make the French system ( I have lived here for a long time and it looks like my husband will be staying long term) undertand how important it is that there are so many woman suffering - i had thought of leaflets, but have now seen Judy's reply to you below.

I am quite fraught that only Physios can diagnose in the UK. In my case PNE was diagnosed by my Gynaecologist here in France who was almost in tears as I was in so much pain following the hysterectomy which he performed. He did not apologise. And all the medical world are allies and will not omit to mistakes.

BUT they do need to address their Theatre nurses and staff to look after their patients in the operating theatre, the placement of the body and legs and hips so that they are aligned correctly etc on the 'bloc' - ('sur le bloc' the Operating table) as they say in France.. and what does go on during an operation we shall never know.

I continue to be perplexed due to the fact that my husband has had to pay so much extra insurance for me and drive me all over France to see so many different Medics over the years until we found Pr. Robert in Nantes and yet it all costs so much all the stress and fraughtness involved in pain, the stress on relationships...endless troubles with pain from PNE... do they ever really understand - unless they suffer from it themselves. If they did the physios or other Gynaecologists would diagnose quickly. Fortunately I was diagnosed and then the Unit in Clermont Ferrand University Hospital in France backed up that I did have Pudendal nerve entrapment,

Am I brave to do a blog and go viral ... I don't know. I have seen so many U Tube blogs.. it is desperate. If only blogs could be sent directly to the top dogs in hospitals in Europe and around the world. They really would have to be so professional, factual etc................

Sorry banging on about it.

I am to see Pr. Robert on 27th of October for my 6 month post operative rendez-vous.

Good news is that I did my first 5 K drive down to the supermarket on Friday.....Yipeeeeeeeeeeeeeeeeeeeeeeeee.

I was absolutely exhausted after coming back and ached the day after. Will drive again tomorrow.

It is a slow progress.

over and out for now.

2CV1964

[PPSN_JudyB Pelvic Pain Support Netwo]

I'm sure that patients do a lot on a individual basis when speaking with their doctors. A GP may only see one patient with any of these conditions in their practise lifetime. Their interest focuses on conditions that affect large numbers of people such as diabetes, high blood pressure etc. Leaflets are usually thrown away in GP practices as they get so many. We always have our general leaflet about the charity at medical conferences and at the nurse undergraduate patient experience session we have been delivering every year for the last 7 years at Leeds University. This involves 150 nurse trainees. This is the only input they have about pelvic pain in the whole of their training and they value it very highly.

The National meeting we are organizing in Bristol in October with interested health professionals and patients from around the country is part of the ongoing work we are doing on services for those with pelvic pain. We are gathering information about how patients are involved at local level around the country. Previous meetings have been in London and Southampton and we always have a patient speaking about their experience. This keeps people grounded and focused.

[Hidden in reply to PPSN_JudyB]

Sounds like you are doing some excellent and valuable work. Well done and thank you for spreading the word.

[Suzysheep]

Yes, I agree with sueboooo ..... Very valuable work indeed, but it sounds like an uphill struggle.

Xxx

[Alaine1 Administrator]

Hi Judy

Do patients have to be invited or can anyone attend as I would find this really interesting especially as I have studied pharmacology at university and also suffer pelvic pain due to adenomyosis, history of endo, IC, PFD. Thank you

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Alaine,

It is by invitation only for health professionals, clinicians and patients . We need to know how many people are coming for the venue, lunch etc

You can e-mail me at [e-mail] if you would like to come