Health Professionals need more training in managing chronic pelvic pain and chronic pain in general.

[sierra]

I graduated as a medical doctor in 1999. During the undergraduate course, I do not recall any input regarding management of chronic pelvic pain as a general condition. The management of specific gynaecological diseases eg endometriosis, PID, ovarian and uterine diseases were taught as separate conditions. I do not recall there being much teaching on chronic pain. Clinical Pharmacology was more focused on system based pharmacology eg cardiovascular pharmacology. I do not recall any undergraduate teaching regarding the basic science, assessment, management, biopsychosocial aspects, self-management of chronic pain.

Even in my postgraduate years and training as a GP, there has not been much focus on chronic pain until recently ie Pain Guidelines, NICE etc. As a postgraduate you have no compulsory teaching on chronic pain or chronic pelvic pain. You choose what educational events to attend or what modules to do. I passed MRCGP in 2010 through Interim Membership of Assessment of Performance and again you could choose what to do for your chronic condition module. I feel it should be a compulsory part of General Practice training as chronic pain is so common and the psychosocial aspects need to be addressed and more patient support services need to be made available. In fact a care pathway would be great incorporating pudendal neuralgia, pelvic nerve problems and other pelvic conditions that are not recognised like interstitial cystitis, pelvic floor dysfunction, myofascial pain, pelvic congestion etc. Some patients can have complex pelvic problems particularly if the pudendal nerve is damaged due to its sensory and motor function to various organs in the pelvis (bladder, bowel) and perineum. A multidisciplinary approach is crucial to properly manage these patients.

Conditions like interstitial cystitis, vulvodynia, urethral syndrome, pudendal neuralgia have never been taught. I asked a renowned Urogynaecologist about pelvic floor dysfunction and pelvic congestion syndrome and she gave me the impression that these conditions didn't exist ! Even an expert urologist did not believe that the pudendal nerve could contribute to IC-like symptoms.

As I have chronic pain and pelvic pain, and have been under a Pain management service, I am more aware of what is available. I am sure many of my colleagues are not aware of PTNS, Sacral Neuromodulation, pelvic floor botox, botox in the bladder, NOI pain management, pelvic floor manual therapy, myofacial pain syndrome, treatment of CRPS and even that you can have pudendal nerve decompression surgery.

Health professionals need more training on pelvic nerve problems and the psychosocial impact these severely painful conditions have on sufferers. Patients should not be left struggling on their own for answers and support. It is clear that health professionals do not understand the implications of these conditions as I have been given conflicting advice from various consultants and physiotherapists. I have been advised to do strengthening pelvic floor exercises yet these exacerbate the pelvic pain. This would be the case if you have pelvic floor spasm and internal trigger points. Treatments for IC will not treat nerve related bladder problems and a suprapubic catheter should never be the treatment for painful bladder conditions.

[helenlegs11 Volunteer]

Oh my word, no YOUR words, wonderful !! I could not agree more. I just shows how dramatic the problem is when you have found yourself facing similar problems as the rest of us.

This quote from your blog demonstrates the ridiculousness of the whole situation.

" I asked a renowned Urogynaecologist about pelvic floor dysfunction and pelvic congestion syndrome and she gave me the impression that these conditions didn't exist ! Even an expert urologist did not believe that the pudendal nerve could contribute to IC-like symptoms."

The only arsenal I have to address this so far has been the odd rant on here. Although I am perfecting the raised eyebrow, quizzical look in front of pelvic nerve pain deniers who should know better. That's going to get them believing isn't it

But what else can a ordinary person do? we are in pain and are bound to exaggerate. The 'poor me' sympathy vote stops us being excluded from the community and we, as damaged individuals, all hark back to our primitive roots as we can't manage alone. Sob!

No way!! I just wish they would get it into their thick egotistic heads (that's a technical term, no offence meant ) that these pathologies do exist we are NOT exaggerating, sobbing or wanting anything as useless as sympathy.

I suppose that the lack of training is to blame and I shouldn't be so rude but there are some doctors who have stepped outside of their own speciality box and are actually able to help us. Pelvic pain, especially (I think) nerve pain is really interesting and challenging. Being a 'pelvic detective' with all of the complexities involved would be just the thing for scientific clever minds. . . no??

The word need to be spread as far and as wide as possible, training and awareness is key. The lack of recognition is getting on my nerves

To this end There is a petition that I hope everyone has or will sign. I know it focuses on pudendal neuralgia but at least that is a start.

I contributed to the text and editing, although it was another guy's inspiration and I have complex pelvic nerve issues so I will not want this to be solely about PN, but the script was already getting far too lengthy and we need to start somewhere. . .

Anyway here is the link to sign ipetitions.com/petition/req... (no need at all to add a donation when prompted)

I will be partly responsible for distributing the petition once we have a major amount of names on there (that's up to you now :)) However, you have my word that I will try everything in my power to spread the word. Please support this.

Thanks to all of you who already have.

Helen

[PPSN_JudyB Pelvic Pain Support Netwo]

PPSN has been asked to speak about the subject of educational opportunities from the patient perspective at the World Congress on Pain in August. This is a first and something we are passionate about. We are invited to represent patients at numerous important events in addition to this too, however we have no funding in order to get there. Our only fundraising event this year is the British 10K in London this coming Sunday 8th July. 4 girls including 1 of our trustees have been training for several weeks to raise funds so that we can continue supporting patients. We would hugely appreciate your support with this.

pelvicpain.org.uk/index.php...

[helenlegs11 Volunteer]

Hope you are able to accrue enough funds Judy. . . .Everyone!! this is our chance to get somewhere.No point in whingeing and moaning that nothing gets done. OK, that's usually me I'm sure that every little amount will help.

[paininla]

Thank you for this powerfully informative post!

[catfish]

Hi all,

Im a health professional too ( nurse practitioner). I trained in 1991 as an RGN and as an NP/Nurse prescriber in 2001 with continued training and practice. Like Sierra i have never had any training with regards to nerve related pelvic pain. In fact its not even in the medical books !

I developed pudendal neuralgia 12 months ago after having the luxury of perfect health! My only crime - exercise !! Like so many sufferers on this board i have been "around the block" seeing various consultants trying to explain my symptoms. Never once did they suggest nerve entrapment or neuralgia as a cause. Only with the help of this forum & the members on it did i manage to find a way forward.

What really troubles me is that this condition and other pelvic nerve related complaints are seemingly so rare that somebody forgot to put them on the agenda! Virtually every condition under the sun has a management guideline attached to it other than pelvic neuralgia. It seems our only benchmarker is each other and the only directive are the forums.

I had a horrible sinking feeling early on when i suggested PNE to my urologist and what the treatment options were. He asked me to "look it up on the internet". I realised then that i was my own best advocate. This is unacceptable. Thankfully we do have a voice through this charity & lets hope they listen to us.

Caty