I mentioned, briefly in my last post, the matter of vulvodynia but not in a whole lot of detail. What I didn’t allude to is how this has been a lifelong issue, though I hardly knew what it was, or how to give it a name, for a lot of those years. That last sentence doesn’t even begin to convey all the years of pain and misery, unaddressed fears, self-beratement and shame that goes with the territory as you seek out answers from GPs who don’t have a clue (and often prescribe meds that make things worse…), deal with blame and resentment from partners along with so many additional issues experienced throughout pregnancy, labour and in the postpartum phase due to the kind of connective tissue challenges that aren’t all that typical thus get overlooked or fobbed off by the midwife of doctor (for instance, when you continue to be in pain months later or even never feel quite the same again). Then there’s other long running issues such as potentially much heavier periods, dysmenorrhea (extremely painful cramps during menstruation), a tendency towards developing cysts and then a whole shedload of issues coming along with perimenopause, menopause and afterwards.

This quick run-through more than hints at a broad territory of sexual health issues associated with hypermobility that is simply not talked about, or researched, enough as I write these words so, whilst I don’t intend to share a great deal of detail about each condition in here, apart from some general (potentially helpful) coverage on the topic of vulvodynia, I do feel its my duty to flag-up these issues up if I am going to attempt to cover all the various “lived experience” aspects of Ehlers Danlos that I personally know about. To miss this topic out is to leave a gaping hole in the picture I am trying to paint of my own personal health experiences with this condition and neurodivergence in general!

What’s this got to do with neurodivergence? Well, in their latest issue, ADDitude magazine have an article entitled “Wanted: ADHD Research on Woman and Girls” and it strikes me how the same title could be used with EDS substituted for ADHD. So many of the headers in that article relate to sexual health…the issues of cycling hormones, the effects of hormones on neurotransmitters, difficult responses to birth control pills and hormone replacement, a link with higher rates of polycystic ovary syndrome, the impact of perimenopause and menopause on symptoms…etc. all of which could be listed as potential research areas for EDS. After all, there is a known crossover between ADHD/autism and hypermobility (to the degree that joint hypermobility has been proposed – see study Association between adult attention-deficit hyperactivity disorder and generalised joint hypermobility: A cross-sectional case control comparison – as a marker for suggesting other assessments to do with neurodivergence). In “Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain” published in Frontiers “the odds ratio for GJH (generalised joint hypermobility) in neurodivergent group, compared to the comparison group, was 2.84 (95% CI 1.16–6.94). Neurodivergent participants reported significantly more symptoms of orthostatic intolerance and musculoskeletal skeletal pain than the comparison group. The number of hypermobile joints was found to mediate the relationship between neurodivergence and symptoms of both dysautonomia and pain”. In my view, researchers would do well to look at the bigger picture of both neurdivergence and hypermobility combined when tackling some of the suggested topics listed by ADDitude in their call for more research attention to these areas.

Interesting is that “An ADDitude survey found that an enormous number of women are diagnosed with ADHD during the perimenopausal and menopausal years and that those who were previously diagnosed experienced a worsening of symptoms.” I would say, the same applies to hypermobility, the symptoms of which can come on much more strongly when menopause is just around the corner. It is of absolutely no surprise to me, in hindsight, that I first realised (or accepted…as it became indisputable) my neurodivergence very shortly after menopause and that I first realised this on the back of the fact I had finally come to pay my hypermobility some proper attention as a result of much worsening symptoms, which begged the question “am I also neurodivergent?” because I already knew of the link and the rest, as they say, is history as my lifelong jigsaw puzzle finally came together with all the missing pieces.

So one topic I will highlight again is vulvodynia because it is a topic not talked about nearly enough. In one study (as reported in Women With EDS or HSD Often Affected by Vulvodynia, Survey Finds in Ehlers Danlos News), half of women with hypermobility were found to report experiencing vulvodynia which is a condition that causes chronic pain of the vulva (often described as stinging, stabbing, burning) along with dyspareunia (pain with sexual intercourse). I only wish I had known this when I was in my 20s being fobbed off with more and more antibiotics by a doctor who didn’t seem to understand what I was describing or where my obvious discomfort came from!

In turn, EDS, HSD, and vulvodynia are associated with other health issues, including fibromyalgia and ME/CFS (the attached article on vulvodynia in these conditions doesn’t even hint at hypermobility as a potential underlying source of the pain; no wonder I was left in the dark for so long) and interstitial cystitis, a condition that affects the bladder and an old foe of mine. A 2021 study I came across entitled “High rate of dyspareunia and probable vulvodynia in Ehlers–Danlos syndromes and hypermobility spectrum disorders: An online survey” states that “Women with EDS were reported to have an alarming 77% rate of dyspareunia (pain with sexual intercourse)” and goes on to say that the two are widely considered to be the same condition. It also points out that no studies have been done on these related conditions and that women living with them tend to rely on Facebook forums to share and consolidate their experiences. This is clearly not an ideal state of affairs and leaves far too many women feeling broken, afraid, misunderstood, belittled, mismanaged and mostly in the dark!

What I want to do here is not run down all the issues I have personally had over the years, including most of the issues listed above, which could be a bit too close to the bone, but simply air some of these interrelated topics so that they are at least considered. I want to point at one or two things that I have found useful for navigating the territory, mention steps that can be taken (or, at least, a step that I am now taking…belatedly, but better late than never) and point you at a video that I just happened upon via one of the forums on Ehlers Danlos Syndrome which does a pretty good job of talking you through the different age stages of a life lived with hypermobility and the associated sexual health issues that may be encountered as a result (see below). Just getting these things a little clearer in the mind, potentially allowing yourself to realise (at last) that there has probably always been a higher risk of encountering sexual health issues in your case if you are indeed hypermobile, may come as some sort of relief. You aren’t broken, messed-up or odd, you are “just” hypermobile (though there is seldom anything “just” about this whole system condition…) and this tends to put a completely different spin on everything, something you may find helpful to point out to your health provider when they next try to treat you as someone more run of the mill!

So in no particular order, some things I have found helpful:

From a forum How I cured my vulvodynia, may include useful tips, including the idea of desensitisation. I suspect cure is a strong word when you have hypermobility but anything that relieves the pain, which may come and completely go during different stages of life (as mine has) is worth knowing about.

By the way, when it comes to applying topicals, I much prefer natural ingredients and am getting good effects from using organic alternatives such as Vulva Balm which contains propolis along with things like honey, olive oil, beeswax etc as they can be extremely soothing as well as moisturising. Anything artificial, scented etc seems to make irritation much worse in the short or sometimes longer term.

From my own observations – oxalates may make vulvodynia and interstitial cystitis worse (therefore following a low oxalate diet may be helpful) and I have found numerous anecdotal accounts to support this. However, I suspect oxalates are an irritant to a pre-existing condition and not the cause, as has also been found to be the case in at least one study.

Likewise, lowering histamines can be a help with managing the condition. I now take Diamine oxidase (DAO) before higher histamine meals and this has been generally helpful regarding general avoidance of higher inflammation levels in the body. DAO is a naturally occurring enzyme in the gut which breaks down histamine and which may apparently be in short supply in neurodivergent people!

The pudendal nerve (pudendal neuralgia) can be a factor and may become impinged upon by other hypermobile factors in the body, something to discuss with your hands-on therapy provider. Especially if your pain gets worse on standing or being upright, this may be worth considering.

Finding a hypermobility aware physiotherapist can be a game changer, something I have finally managed to do after years of searching. Together, we are working through the long list of issues I have to do with my hypermobility, pelvic floor and sexual health issues on a weekly basis as she is a pelvic specialist as well as having 30-years-plus of experience working concertedly with hypermobile, often neurodivergent, patients. From what I have gathered so far, from both her and other in-the-know therapists online, a comprehensive approach that not only addresses the pelvic floor but also the way you move, exercise, and even breathe can be helpful (I am already being worked through all these aspects). The pelvic floor may have become too tight in response to hypermoblity issues and may even include scar tissue from pregnancy, as mine certainly does. So the physio will need to focus on tissue restrictions in a way that is cautious and mindful of hypermoblity, including the need to stabilise the body before releasing (when this isn’t done in an informed hypermobile way, things can get a lot worse, as I have many years of adverse experience with other therapists to confirm) therefore finding a therapist who is extremely knowledgeable about hypermobility, perhaps one who lives with it themselves, is the first crucial step and takes time but pays off. I found mine via recommendation on the local FB hypermobile syndromes support group.

Treatments such as this can take some time…maybe many months or even longer…but it can also, I am assured, pay off so I am in for the long haul, tackling not only this area of health but all aspects of my hypermobility, including my many dysautonomia issues, circulatory issues, my numerous painful joints and management of my cervical instability along with related neuralgia etc. I am quietly confident that finding the most informed hands-on physiotherapy support is a huge breakthrough after years of literally floundering in the dark.

Finally, that video I mentioned above which is really useful for isolating the various age-related gynaecological issues we hypermobile folk tend to encounter as a way of starting to be able to talk about them in a language our health providers might understand (we can but hope).

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.