Why aren’t you listening, madam? I am not crazy! The pain is real!

My perhaps-cryptic post of a few weeks ago is the most current medical experience I am having. Most of my posts about CBT or DBT refer to therapy groups that have happened in the past couple of years, but that I am not currently in – I’m at the ‘go free, child, and attempt to live with these diseases using the Jedi mind tricks you have learned’ stage. But I wanted to include my experiences with vestibulodynia because they are now involving medical treatment, as well as both physical and psychological pain.

As usual in this country, getting an appointment with a specialist can take a long time. When I finally brought this to my family doctor, he sent me to a obstetrics clinic not too far away, to a woman he said was supposed to have knowledge of vulvar pain, as a sort of specialty. Next time I go back to him, I will inform him that he is very much mistaken in her interests. She was perfectly professional, but she said (as many people who have vulval pain symptoms will hear time and time again): ‘There’s nothing wrong with you.’ She said I take a normal sized speculum without difficulty (she apparently did not look at my face), and my tissues are healthy. That’s great, I said, but is it supposed to hurt? To my shock and disbelief, she said yes. First she said it’s supposed to be uncomfortable, and I said, no, but actually painful, really painful – and she still said yes!

A message to every woman feeling this pain (and frankly every person who feels pain despite having ‘healthy tissue’) – don’t give up!

I actually started tearing up at this point, unable to believe that four months of waiting had led to this. This seemed to give her a clue that I wasn’t kidding or some child complaining of discomfort. She asked, ‘Ok, well where does it hurt?’ I pointed to her diagram, explaining that it was just at the ‘entrance’ (I hate that word. It feels so gross. I do not wish to think of my vagina as having an ‘entrance’, especially since it doesn’t have an ‘exit’. It is inherently a sexualized term, reminiscent of erotica and images of penises ‘entering’ a vagina and so forth. I do not like the idea that I have an entrance. I am not a thing to be entered. I don’t care of vestibule means essentially the same thing in Latin – it is medicalized instead of objectified.).

TANGENT ASIDE. The doctor said she would refer me to a vulvar clinic, if I wanted, but there was a 6 month waiting list or longer, etc, etc – YES PLEASE. She disappeared without dismissing me or saying goodbye, and I was left uncertain if I was supposed to wait or leave. She clearly wanted to get back to the pregnant women in the clinic who deserved her attention.

Six months later was the post from a few weeks ago, at a downtown clinic in Toronto. With my previous experience and the doubt of my family doctor, you can see why the words ‘ you are not crazy’ were invaluable.

By this point I had tried: dilators, increasing the frequency of having sex to try to ‘get over it’, more lube than is reasonable and of many different kinds, relaxation techniques, speed changes, 2 hour long foreplay, and (with my family doctor) hypnosis (oh dear god). Remarkably, almost none of this was what Dr. R thought was the best starting point. Instead, I am now: having a daily dose of topical lidocaine overnight, learning pain mindfulness techniques, doing couples therapy exercises, and am supposed to stop the pill soon – and then subsequently to try estrogen suppositories. Oh my goodness! Talk about multi-pronged attack!

I would like to keep posting about the mindfulness training. I feel as though mindfulness training for depression and anxiety and borderline have all been different – cultivating a general awareness, like an alarm system that will help deal with floods before they get bad. Mindfulness for pain seems harder, at least in practice these last couple of weeks. I feel like I am trying to ignore a flaming sword waving around and jabbing me. Although the point is not to ignore the pain – it is to relax in the presence of pain – it still feels like willing oneself to lie on railroad tracks and wait. When I was successful with other forms of mindfulness, it meant a big reduction in the extreme moods and crises. When I’m successful with pain mindfulness at the moment, I feel like nothing is changing.

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