HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE). If you have come to this website it is probably because you are in pain or you know someone who is in pain. Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back. Our Mission
Top Tips from Karyn and Helen
Please bear in mind that people who come to HOPE are often desperate for help, as pelvic neuropathies can be challenging for the clinician as well as the patient. The HOPE forum can seem to have a negative slant because of this, especially initially. However, there are many success stories; most are not mentioned as the majority of people are now happily getting on with their lives. HOPE is designed to inform, advise and help people with PN worldwide, so please go to the forum, tell your story and/or ask any questions about pelvic nerve issues. I’m sure you have a few questions that need answering . . . . . . . That’s how we all got here.
Become your own health care advocate.
Educate yourself as much as possible. Read up on pudendal neuropathy, other pelvic nerves and the pelvic anatomy. The home pages of HOPE are a wealth of information for this. Even a rudimentary knowledge can help. The pelvis is a complicated, interconnected area and unfortunately some clinicians have little understanding of nerve issues here, although thankfully this is changing.
Don’t be overwhelmed.
Take all of this new information on board in stages as things can become a bit overwhelming. There is a LOT of information but thankfully only some of it will relate to your own problem. Remember that there are quite a few separate anatomical sites, where pelvic neuro problems can occur and it can take some ‘detective work’ discovering where your problem may be and what will help. Any questions? Ask on the forum.
Nerve Blocks for
Navigating the Pudendal
The directors of this organization are Amanda, Dave, Catherine, Ezer, Helen, Karyn, Kris, Stephanie, and Violet. We are all veterans of pudendal neuropathy and you can find us on our forum. We review the latest peer-reviewed literature and do our best to keep current with the latest information available to the PN community. Nevertheless, we are not doctors and we recommend that you seek advice from your medical professional for treatment.
Everyone is different.
Due to pelvic complexities, different causes or onsets, and separate anatomical sites for PN there are no hard and fast rules or precise answers to what will definitely work for you However,
There is help and treatment out there for you.
Hope has lists of treatment options and treating clinicians on the homes pages, offering information and help from recommended medication and cognitive therapies to more invasive options, if required. Always, always start with the least invasive. Initial GP appointments. Because neuropathic issues are often quite different (burning, shooting, itching, numbness) to ‘normal’ pain, it should be easy to identify a pelvic nerve pathology, once urological, gynaecological and prostate problems (easily tested) are ruled out. However, sometimes this ‘easy to identify’ nerve problem is overlooked by doctors who are not PN aware. It may help to print the list of symptoms from HOPE’s home page and/or the ‘letter to medical professionals’, to take along. Instead of making a statement like (‘I’ve looked on the internet and) I’m sure I have pudendal neuralgia!’ ask something like, ‘is this a nerve problem, which nerve is in that area? Or ‘that’s the area of the pudendal nerve, isn’t it?’ Turn it into a question, that way you can ascertain how accepting of a PN diagnosis your primary practitioner is without alienating the less open minded. You will need their help.
If you really are getting nowhere and have tried and tried, it’s simple, go elsewhere!
PN ‘Tool Kit’
Nerve pain can be difficult to get under control; it can take some trial and error to find some medication, often a combination of drugs (see home page) that will help. However once found it will help halt any escalation of problems in the interrelated pelvic area.
Many PN’ers actually get the initial diagnosis from a PN aware physiotherapist. Their treatment can also be therapeutic, even curative, as well as informative. Good pelvic evaluation (probably more than one however) can reveal a lot. Some people do report a flare of symptoms after physiotherapy; however this will most likely subside but please always choose someone who is PN aware (list on home pages).
Try pain management therapy.
If you can get a referral for pain management therapy please take advantage, at any time, although sooner rather than later is preferable. There is also a lot of information about cognitive behavioural therapy, acceptance and meditation etc. on line for a self-education programme too. If you have these therapies in your pain ‘tool kit’ you can use them when necessary.
Ice is nice.
A small packet of frozen peas or sweet corn (gets less mushy) wrapped in a cloth strategically placecan give more instant relief than many prescriptions. Alternatively, water filled condoms with some small alcohol content are sometimes a preferable substitute.
This tip can be the most challenging but often the most helpful too. Experimentation with different cushions and seating options can offer additional comfort although some find that only a cessation and/or pacing can actually help. Some have gradually introduced sitting again to good effect.
Sitting is now included in ‘activity’ but often bending and squatting can be the main additional activities best paced. Everyone is different, as there are many different pathologies but once you find your main PN inciting ‘activities’, pace them to avoid flaring symptoms.
Nerves need to slide and glide.
It can be difficult to find out what actions cause problems as symptoms usually are slow to onset. However, it is best to keep mobile (with pacing in mind.) With muscles, we use them or lose them and nerves do have an amount of ‘give’ to allow movement. Do as much as you can but listen to your body, no one knows you as well as you do.
Flare up of symptoms.
Rest and pacing activities will usually settle any flare of symptoms quickly, so don’t panic if you do overdo things.
Don’t worry 2.
You have found HOPE. This forum is the perfect place for information, advice and sometimes just a good old whinge. We have all been at a low ebb, we do understand.
Authors of this article: Karyn and Helen are veteran PN patients and directors of HOPE. They are not healthcare professionals.
The American Board of Obstetricians and Gynecologists revises decisicion on certification of physicians who treat male patients.
On January 30, 2014 the ABOG announced a revision in their policy on whether an ABOG-certified obstetrician-gynecologist can treat male patients in certain instances without having their certification revoked. The announcement can be seen at this link.