No better than the flip of a coin?

I read a disturbing review recently, about the state of the art treatment for persistent pain as being topical amitriptyline or removal of the offending tissue.  If we were discussing low back pain most would agree these would be ridiculous treatment options.  Imagine my crinkled nose of disdain to find this commentary in July 2012 regarding the functional outcome of treatment for vulvar pain (vulvodynia).[1]  Roughly 44% of the patients in the two studies reviewed still had pain with sex at the end of the follow-up period.

Topical medication or cutting the bits off are considered the two best options and result in roughly chance success. Can we do better?  Vulvodynia describes an area that hurts, not the cause of the pain.  It’s safe to say that in acute and chronic pain there are multiple inputs that may drive a pain response. We need to look at the possible contributors or triggers of this response. Maybe we need to take an alternate approach where we look at changing the interaction with the bit that hurts.  In physical therapy we aren’t avoiding it or cutting it off, we are trying to figure out why it’s doing what it’s doing.

So what might be the cause?  A clever group in Oregon did a histological study with vulvar tissue following vulvarectomy for pain.[2]  They found neuroinflammatory markers increased in both primary and secondary vulvodynia. While this is interesting, that inflammation and neural sensitivity play a role in vulvar pain (not surprising?),  it fails to show causation.  The authors clearly state they have no controls – no otherwise healthy vulvas where used as comparison.  We don’t know what’s normal. And the treatments we have are no better than chance.  That can’t be good enough.

Persistent pelvic pain of all sorts is getting more popular to discuss, but the discussions sound much like the back pain theories of the 1980s.  Let’s not settle for nearly 50% dissatisfied customers. I’d really like vulvarectomies to become a passé approach, for now it’s still considered an option.  Phantom vulvar pain – not fun to treat, but certainly less fun to experience.  I am not willing to settle for “good enough” when there is so much more possible.

About Sandy Hilton

Sandy Hilton PhysiotherapistSandy is a physical therapist with a private practice in Lincoln Park – Chicago, USA.  She is the Director of Programming for the Section on Women’s Health of the American PT Association and is supported by the Section to bring top-notch speakers on such things as Pain Neuroscience to the conferences.  Sandy is curious about the application of Graded Motor Imagery in pelvic pain and has been stretching CRPS and GMI research to extreme lengths in clinical practice for chronic pelvic pain conditions.


Nguyen RH (2012). Sexual medicine: When good isn’t good enough–treatment for vulvodynia. Nature reviews. Urology, 9 (9), 482-3 PMID: 22801044

Leclair, C., Goetsch, M., Korcheva, V., Anderson, R., Peters, D., & Morgan, T. (2011). Differences in Primary Compared With Secondary Vestibulodynia by Immunohistochemistry Obstetrics & Gynecology, 117 (6), 1307-1313 DOI: 10.1097/AOG.0b013e31821c33dc


  1. Sandy Hilton says

    Excellent comments.
    Fibrologic – your courage and persistence won the day. I wish I could teach all my patients those skills so they stick.
    Trish/Lorimer/Ruth – The Ride at Your Own Place has an option to do what you can. That works for those on the ‘graded exposure to sitting a bike’ program. I can see the appeal to widen the focus – the Pain Triathlon? No speedos, right?

    Agree completely about the entrenched hardwired “let’s skin roll it” approach to pelvic pain. It will take time and lots of repetition to change, and solid pain education in the PT schools. Hoping more of the #pelvicmafia drop by – there are great physios around the world doing pretty cool things. All pre-evidence, but I think there’s room for that… as long as we can defend what we do in the clinic with solid reasoning.
    Carolyn – thanks for more references to look up. Nice.

  2. Congrats to Sandy and Trish for a well-written post and comments. Let’s take this discussion one step further. Pelvic pain patients suffer from a triple whammy- talk about threats!! Pelvic floor problems are poorly understood, where the majority of orthopaedic physiotherapists are still giving Kegels to patients with any sort of pelvic floor problem (without even assessing the pelvic floor first). Second, the medical community is still focusing on end-organ pain and reductionist medical diagnoses, and specialized pelvic health physiotherapists are so wrapped up in tissue dysfunction (not considering pain neurophysiology education and the sensitive nervous system) that we are treating this problem like acute pain, steeped in tissue-based treatment. Furthermore, pelvic pain is a private, under-reported and highly personalized problem which increases the threat level further for these patients (just in case they needed to be a little more sensitized). It starts with education. If physiotherapists are movement experts, than movement of the body and pelvis should not be considered without accurate consideration of the pelvic floor. This means at least learning assessment and evaluation skills of the pelvic floor in our Master level programs. No physiotherapist should graduate in 2013 without the basic knowledge of assessing the contribution of the pelvic floor. There should also be no graduating physiotherapist from a Masters program in 2013 who has not been trained in a biopsychosocial approach based on neurophysiology-based pain education for persistent pain. (Domenech et al, 2011 and Nijs ,2012). We have to start somewhere, and if we are teaching evidenced based practice in our universities, lets accurately reflect the state of the pelvic floor in our knowledge-base, including the real contribution of the pelvic floor to not just pelvic pain (vulvodynia) but also to chronic low back pain (Smith et al, 2006 and Eliasson et al, 2008).

  3. Dr Ruth Jones says

    Couldn’t agree more Trish re designing an appropriate trial that reflects up to date pain physiology. But Lorimer, you’re not encouraging fear avoidance are we???? They can cycle, they just think they can’t! 🙂

  4. Nice post Sandy and nice comments. Trish – perhaps we should make it a ride or walk for pain? I am sure we could make this work- perhaps 2014 is the year we diversify….

  5. Only slightly better than the flip of a coin!
    On a similar topic of persistent pelvic pain, but this time IC/bladder pain syndrome and chronic prostatitis/ chronic pelvic pain syndrome (all still in the pelvis and only just making it into the light of day ). Sorry Sandy, but it doesn’t look as though physical therapists in this study were very much better than the flip of a coin.
    My nose still crinkled (and tears came to my eyes!) when I read a randomised controlled pilot study of myofascial Physical Therapy for the treatment of urological chronic pelvic pain syndromes (Fitzgerald et al 2013) . The treatment arm received 10 hour-long weekly treatments of myofascial release/trigger point therapy of internal and external muscles while the control arm received the same number and length of global therapeutic massages. Global response rates were 57% for the myofascial PT vs 21% for the global massage.
    Why would pelvic physiotherapists be so naïve as to think that you could treat a chronic pelvic pain condition just by manipulating the peripheral tissues without considering the central processes? It must be clear that none of these single interventions, where you apply a cream or cut off painful bits (as you described for vulvodynia) or tweak some muscles (as in this study) are going to provide answers to complex problems with contributions from both the periphery and brain. As you say, no-one would think of doing that for chronic low back pain in 2013! Pelvic floor physiotherapy has a lot to offer but only when all aspects of the problem are addressed – sensitive nerves/skin/muscles and the brain (with its individual road map of memories, anxieties and learned responses).
    Oh and Lorimer! These folk won’t be joining you on the Ride for Pain – they cant sit on a bike saddle!

  6. Jacqueline Pomeroy says

    As a physiotherapist practising in this area I was so happy to see this topic being raised in the Body in Mind group.
    Vulvodynia is such a key example of how pain impacts on the emotional wellbeing of the person living with this condition and how it affects their closest relationships. Clients often express a huge sense of relief when they meet with a practitioner who validates their experience and can reassure them that there are effective treatments.
    In addition to biofeedback and stretches using vaginal dilators, gentle manual stretches, myofascial release and correction of faulty breathing patterns are just some of the approaches that facilitate good outcomes.
    The advantage with these techniques is that they enhance body awareness and the clients ability to tolerate graded exposure to tactile input.
    Working in a multidisciplinary setting or in close contact with supportive practitioners makes positive outcomes achievable.

  7. Yikes, that definitely had me crossing my legs. I suffered from vulvodynia for around 7 years during my twenties. One day for no apparent reason, intercourse hurt like hell. Any form of vaginal penetration hurt. It felt like the flesh was tearing apart, but there was no apparent damage. It probably took a year or so before I raised it with my GP. She did the usual sexual health check and said there was nothing abnormal. She referred me to a sex therapist. The sex therapist basically told me I needed to “get in touch with my body” and to read “Becoming Orgasmic”. Orgasm wasn’t a problem and never has been, it was penetration that was the issue. A few more years went past. I developed depression and saw a counsellor and finally talked about how much not being able to have sex was impacting on my relationship, my sense of self worth, my sense of femininity etc.. By chance, she had recently read a newspaper article about vulvodynia. This was the first I’d heard of the condition. I got in touch with Dr Marek Jantos, a behavioural psychologist who had been having great success using biofeedback to treat vulvodynia. I remember that huge sense of relief at my first appointment to have someone explain what was happening to me. Dr Jantos explained that my pelvic floor muscle had shortened up so much that trying to stretch it during penetration would cause pain, same as if you tried to over stretch any other tight muscle. He got me started on using a biofeedback device to help me learn how to tighten and relax the muscle. After a month or so of that we progressed to using dilators, starting small and working up to larger sizes. It probably took around 6 months to get to the stage where I was having painless penetration. This was the first stage of me recovering. Unfortunately due to having had vulvodynia for so long, there was still a lot of mental and emotional baggage to process. I think I’d hoped that if the physical issue resolved, everything would be fine. There were still significant issues with intimacy in my relationship and I still had huge issues with my own sexual identity. It took another series of counselling sessions, developing a different chronic pain condition (fibromyalgia), and hitting a crisis point in my relationship before I really dealt with those issues. I’m happy to say that I was able to get through it and I’ve enjoyed a by fulfilling sex life for the last couple of years.

    I guess what I hope my story highlights is the following:
    – practitioners need to take sexual pain seriously and provide correct diagnosis early on with referral to appropriate specialists. Telling a woman “there’s nothing wrong down there” is not helpful.
    – biofeedback and gentle stretching with dilators is an effective physical therapy.
    – never underestimate the huge psychological impact of vulvodynia that can last well after the physical symptoms are resolved. Seeing a psychologist should be a necessary part of any treatment program.
    – medication may be of assistance as an adjunct to physical and psychological therapy.
    – surgery should only ever be considered if there is sufficient evidence that the tissue itself is the cause of the pain (which in most cases, it isn’t).
    – it is possible to treat vulvodynia and return to a satisfying sex life.