Thank you so much for all the love following my last Pleasure Moans blog and the guest post I wrote for Hysterical Women about finally being diagnosed with endometriosis. If you haven’t read it yet, check it out here.
When I first started writing about investigating my gynae health I wrote, ‘I don’t want to write about it after the fact, because after the fact might not be for a long time.’ Well, it’s a good job I took that attitude because since I got the endometriosis diagnosis in April I’ve been absolutely useless at writing about it, or at least sharing what I have written about it. This is particularly stupid because after so much nonsense I finally seem to be getting somewhere. A positive blog, at last!
Two big things have happened since I shared the news of what was then a tentative diagnosis. Firstly, I had the post-op where my gynaecologist put to bed any fears that it still wasn’t really an answer by explaining that I have stage 1 endometriosis, freckled in tiny dots mostly on one side of my uterus/recto-uterine pouch. I even saw pictures (which I won’t share, but don’t worry there’s plenty of oversharing coming up). He continued to relieve my doubt by explaining how low stage endometriosis is sometimes (but obviously not always) more painful or as painful as high grade endometriosis because of where it sits: on the nerve layer. To try and stop it getting worse I am getting a Mirena coil (IUS) fitted at some point this summer – I have a lot of thoughts on this which I’ll share another time in a #Periodically blog.
The second thing is that I’ve started pelvic physiotherapy. My symptoms of painful sex are explainable by the fact that endometriosis was found in my recto-uterine pouch but a few doctors I’ve seen have suggested that there also appears to be some pelvic floor dysfunction kicking about, hence why I was referred to a women’s health physio. Without a shadow of a doubt, this has been the most positive, interesting, logical and, dare I say it, empowering, part of my medical path so far and a reminder of why the NHS is so bloody brilliant.
My first appointment was almost an hour long and for good reason. My physio took 50 minutes getting to know me, my medical history and my experience of pain, before a 10 minute pelvic examination. What this meant was that during the verbal consultation we hashed out a hypothesis: that pain, likely caused by endometriosis, had caused the muscles around the top of my vagina to go into spasm creating yet more pain and what feels like a bottleneck in my vagina, explaining why my primary issue is deep pain rather than ‘superficial’ pain. The pelvic examination, which involved gripping my physio’s finger with my fanny (no way to make that sound any less weird), confirmed her suspicions and then some. It seems that the upper part of my pelvic floor is not just in spasm upon penetration, but all the damn time.
Turns out, this isn’t an all too common occurrence and so my treatment plan is a bit experimental at the moment but the point is: there is a plan! The plan is biofeedback. It sounds cool because it is. It involves putting a small probe (yep) in my vagina, which is wired up to a monitor that allows me to see and hear my muscle activity. In pelvic physio it’s mostly used to strengthen muscles to improve bladder and bowl function but in my case I’m using it to try and learn how to relax the muscles involved.
It’s a weird thing, because it doesn’t actually do anything to you but it enables you to understand how your muscles are working and what control you have over them in a way that is otherwise impossible. It’s really easy to understand too. Once it was in (I insert and remove it myself to save some awkwardness) my physio asked me to clench/pull up/engage my vagina and the number (microvolts) went up. The issue was that my number didn’t descend low enough when I relaxed. I’ve been doing to this for a couple of sessions now and while I can make the number jump down low, I can’t get it to stay there – so that’s what we’re working on. I’ve posted a video of the unit in action on my Instagram story/highlights if anyone’s interested in seeing how it communicates with you.
There’s a range of verbal cues used to help someone relax their pelvic floor that of course don’t seem to do anything for me, so it’s a case of trying a bit of everything to find something that works. And for once, I’m actually really hopeful that I will.
You’d think I’d be used to oversharing by now but believe it or not taboos run deep and I’m still conditioned in ways that made me hesitate about posting this blog, let alone illustrating it. But in my experience personal accounts of deep dyspareunia are few and far between, especially treating/easing that pain, and so it feels important share this story, including pictures of my cyber fanny, just in case it’s of any hope or help to someone else.
If you’ve tried biofeedback or pelvic physio, for painful sex or something else, and have tips and tricks about how I can get the most out of it please get in touch – I also finally made a Facebook page for the blog so give that a like if you’re feeling friendly! In the mean time, I’m going to keep trying to interpret my vagina’s microvolts…