Tag: painful sex squad

  • Going digital: pelvic physio & biofeedback | Pleasure Moans #4

    Going digital: pelvic physio & biofeedback | Pleasure Moans #4

    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!

    I’m in the middle of (another) Gilmore Girls binge so bare with the GG gifs.

    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.

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    Nothing says ‘relax your vagina’ better than the horror of wires coming out of it…

    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.

     

    The probe itself
    The biofeedback unit

    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… 

     

  • Vindication, endometriosis & some Douglas bloke | Pleasure Moans #3

    Vindication, endometriosis & some Douglas bloke | Pleasure Moans #3

    In my last blog I detailed my hesitation and resistance to my gynaecologist’s suggestion that I have a second diagnostic laparoscopy (keyhole surgery) to look for endometriosis. It feels weird then, almost two months later, to be writing that this week I had that surgery.

    My hesitations varied from not wanting to repeat another painful and probably pointless surgery like the one I had in August 2017, to wanting an endometriosis specialist to be the one to go in for a second look, rather than a general gynaecologist. Once I received a date for the operation I was more certain than ever that I was going to be withdrawing my name from the waiting list, but I had an upcoming appointment with a different doctor that I had set as the deadline for my final decision.

    This other appointment was a bit of a cock-up – I was supposed to have been referred to a specialist gynaecology clinic in London but wires were crossed and somehow I ended up with a referral to a sexual health clinic in London that specialises in sexual pain. The problem was, the only female sexual pain the clinic deals with was superficial pain, relating to pain that occurs externally or on entry, like vaginismus and vulvodynia. While I have had some run-ins with superficial pain, my most persistent symptom over the last few years has been deep dyspareunia – that’s deep, internal pain during vaginal penetration.

    When I got to the appointment I was, as expected, greeted with, ‘why have you been sent here? We don’t deal with deep pain, that’s gynaecology.’ But I was kind of hoping I might be referred to that hospital’s gynaecology department because it’s one of the best. He decided to examine me anyway, and I realised this was going to be something of a new experience when he said, ‘oh we use stirrups a little differently here…’ One bizarre examination later and he agreed with me that superficial pain was not a primary issue but that it was present. He also said I appear to have some pelvic floor dysfunction which doesn’t surprise me at all. Physio is something I’ve been increasingly curious about over recent months.

    When it became clear that he wasn’t going to refer me to the hospital’s gynae unit, I just decided to ask, ‘do you think I should have a second laparoscopy?’ He took a sharp inhale and said something along the lines of, ‘I’m sure you get this a lot and are pretty fed up of it, but it sounds like endometriosis to me.’ He was right, I have been getting that a lot, increasingly so. He suggested some urological and gastrointestinal causes too, but then he went on to explain endometriosis to me in a way no one else ever had before. He said, ‘some women will be struggling with infertility, have absolutely no pain and a laparoscopy will find endometriosis in abundance. Other people will have serious, chronic pain and yet when endometriosis is found it will be a really small, localised amount, probably on or very near a nerve.’

    This, pardon the pun, really struck a nerve. My symptoms have improved so much since going on the pill that it seemed to me that if I did have endometriosis after all then there couldn’t be very much of it. So I started to focus in on the one symptom that hadn’t changed – deep dyspareunia. I asked around, did a lot of research (I’m particularly grateful for the resources on the Nancy’s Nook Endometriosis Education Facebook page) and discovered that deep dyspareunia is often associated with rectovaginal endometriosis and endometriosis found in the Pouch of Douglas (POD).

    Image result for rectouterine pouch

    ‘POD’ struck a chord. Why did I know those letters? I started sifting through my (now finally organised) records of appointments, examinations and scans and discovered that on one of my more troubling scans, where a persistent hemorrhagic cyst (commonly associated with endometriosis) was found, a very small, uneventful comment was written: ‘some free fluid seen in POD.’ The POD, evidently named after some Douglas bloke, is also known as the ‘rectouterine pouch’ or the ‘posterior pouch.’ It’s the seemingly useless ‘cul de sac’ between the uterus and the rectum. Intelligent design, eat your heart out. The more I read about endometriosis-related dyspareunia the more it all seemed to marry up with my symptoms (retroverted uterus, constipation after sex, deep dyspareunia).

    It was this discovery, as well as my first debilitating period in a year, that pushed me to say I would have the surgery in April after all. I was pretty steady in this decision, up until a week before where I promptly freaked out. My initial fear was that I going to die and it was all going to be my fault, but most of all, I was crippled by the fear of going through the entire process again to be told there was nothing wrong but to continue to be told that my symptoms sound like endometriosis. It’s an incredibly frustrating cycle. Once I talked myself off of that ledge I was determined to be as prepared as I possibly could be for the surgery. Looking at it now, I think I did a pretty good job.

    I had a full sheet of questions and concerns that I wanted to run by my gynaecologist before I let him operate on me, all of which he respectfully and sincerely answered. A few included:

    1. Please don’t stretch my vagina, as you suggested you might – OK
    2. Since deep dyspareunia is my most persistent symptom can you please check my POD and look out for rectovaginal endometriosis – it’s unlikely but sure, I would have looked anyway
    3. Will you open up my old scars or create new ones? A bit of both, personally I prefer going in from the left, so that would mean a new scar
    4. If you find endometriosis how will you treat it? Burn it
    5. Is excision surgery not an option? I hear that it’s better. If it’s significant then I would excise it, yes.

    Ecetera, etcetera.

    Reassured by his answers and our rapport, I was readied for surgery and sat reading Chamber of Secrets until they came and got me.

    Inhale.

    A couple of hours later, exactly 20 months after my first disheartening surgery, my gynaecologist swaggered into recovery (where I was crying and swearing because my drugged-up self had come to the conclusion they hadn’t found anything) to tell me, ‘I found endometriosis in your Pouch of Douglas, it’s not in your head!’

    Exhale.

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    Sore, surprised and a little smug

    It’s only been a few days and I’m still processing. It was a really tiny amount of endometriosis, but as I’ve been reminded time and time again, the severity of endometriosis does not correlate to pain. Giving myself endometriosis imposter syndrome at this point will help nothing.

    I can’t help but wonder what role my own advocacy and research played in finally get an, albeit tentative, answer. Would he have double-checked my POD if I hadn’t specifically done the research and asked him to? Would painful sex ever have been the symptom my doctors focussed on if I hadn’t forced them to? A widely touted statistic about endometriosis is that on average it takes 7.5 years to get a diagnosis, but that’s actually contested between 7 and 12 years. I’ve got here, where I’m not sure I have a diagnosis exactly but where I have had endometriosis discovered and treated, in three and a half years. But reaching this point has been a hell of a lot of hard work, physically and emotionally. I’ve been misdiagnosed with vaginismus, spent months attending psychosexual counselling, been placed on a pill that’s wreaked havoc with my skin and mood, taken anti-depressants for pain management, stopped running, stopped having sex, stopped socialising like a normal twenty-whatever-year-old. I’ve gained a lot too, knowledge, friends, writing gigs, a novel, job opportunities, a post-grad pathway I didn’t expect, a blog – but I am constantly curious about what the last three years might have looked like if my pain had been believed earlier, taken seriously sooner and treated promptly – by myself and by others.

    It’s not yet clear whether this is the beginning or the end of this particular experience. I have a million questions for my post-op appointment and I won’t know if the surgery has actually improved anything for months. But to have had the hysteria label lifted is hugely gratifying. Honestly, I feel vindicated because in my head the pain was never in my head. If that makes any sense at all.

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    Of course, summer arrived the day after my op so I’ll be sporting some DVT stocking tan lines this year!
  • The fun part? | Pleasure Moans #1

    The fun part? | Pleasure Moans #1

    1. Try not to intellectualise your bodily experiences (much too late for that)
    2. If you start dating again, you’re likely to unconsciously pick someone with erectile dysfunction (can I unknow this?)
    3. When you’re ready, try penetration but on your own (oh shit, here we go)

    Those are the three nuggets of wisdom my sex therapist gave me when we finished our sessions together in the autumn. She made it clear to me that she expected to see me again, or that I would see another psychosexual counsellor at some point in the near future. I was being discharged a) because my sister’s Danish health insurance had dried up and b) because we’d hit something of a brick wall in terms of progress. My generalised pelvic pain had improved and I was beginning to handle the upsetting side effects of the pill, the only thing left to test was the penetrability of my vagina. The fun part, right?

    I was in no rush to test this theory, partly because I was so encouraged by the way everything else had improved. Even in terms of vaginismus, we had come to the conclusion that any superficial, psychological pain and reaction I had was situational and secondary. We also agreed that I wasn’t ready to try penetration again. I was happy with the progress I’d made and while it was a really big deal to test the theory at some point, it was nice to live in the pain-free-ish, worry-free bliss for a little while. And it was worry-free. Until…

    A letter arrived announcing the date of my next appointment with my gynaecologist. I knew exactly what it meant. If I went into that appointment and said “yep, all good, pain’s reduced, periods are lighter, plus I’m handling the acne and mood swings” that my gynae would say “job done” and discharge me – rightly so. Honestly, I felt ready to be discharged. But in the back of my mind, the deadline of this appointment deeply worried me. I needed to test the theory that everything was fixed. I could foresee how upsetting it would be to be discharged and only then discover the horrible deep pain during sex was still there, meaning that if I needed more gynaecological care I’d have to start again, again, again.

    Despite the advice of my well-intentioned friends to ‘find a lad’ in order to test my internal mechanics, I knew exactly what to do, or at least, where to go. The Vaginismus Network has hosted a couple of its events at a Shoreditch sex shop called Sh! Women’s Erotic Emporium that has proven itself to be deeply knowledgable about unwanted pain during sex. Months of avoiding this big ominous question but one letter had me on a bus to a sex shop after class. Whatever it takes, I guess.

    Sh! hooked me up with a dilator set. These are specially designed vaginal trainers of different sizes, mostly used to treat vaginismus. While I wasn’t specifically treating vaginismus, I was advised that it was the best option for testing the water again, especially since I didn’t know if vaginismus was going to be part of the process or not.

    I was so sure it was going to be alright, because (have I said it enough?) everything else had genuinely improved. So I tried the smaller two. No pain, no vaginismus. I stopped there for a week or so, but this really bolstered me. I had reached the dream articulated by Fran Bushe in Ad Libido, I had fixed sex. 

    And then I tried the third one.

    Pain. Pain, pain, pain. Deep, cramping, breathtaking pain. Shortly and sharply followed by a different pain and resistance: vaginismus.

    What’s worse, the deep pain didn’t go away. It was like I had just turned my pain back on again, all of it, like a switch. Two days later I vomited up my breakfast because of pain, something that hadn’t happened since I started the pill. And I hadn’t even tried the largest one yet.

    Safe to say, I did. And it was agony and pretty upsetting. Not just for that moment but also because it was quite #triggering in ways I did not expect. I must have tried them for two, maybe three minutes. Not long at all. It just made me feel deeply disturbed, uncomfortable and worried by the fact I have had sex with that pain in the past.

    As a bonus stroke of discomfort, I currently live with my parents. They were pretty aware of my situation and how much it had improved. So when I was suddenly in pain again I was really unsure how to mention, “oh I’ve been upstairs testing out my vag before I see the gynaecologist on Tuesday!” So I did the very rational thing of saying nothing, becoming a bit of a stroppy teenager and not being a very nice person to live with. Oops. Sorry, folks!

    There are lots of things I hate about pain, but up at the top of the list is the exhaustion that comes with it. Whether it’s due to the cause of the pain itself or just by the toll being in pain takes, it sucks. I’ve found the masters draining and challenging, so adding some extra stress, pain and fatigue meant that by the end of term I just felt like a blob of matter floating around. Most of my diary entries from November and December start with “I am so tired,” “I’m fucking exhausted” “bloody exhausted” “you’d think I’d be used to exhaustion by now…” or various uncreative phrases of a similar ilk. I really thought it was just university, but my workload this semester is much bigger and yet I have had so much more energy and I wonder if it has a lot to do with my return to the regular use of painkillers and the fact I’ve stopped using the dilators for now.

    I can’t tell you how much I’ve hesitated over writing this blog. At the LSE Gender Department there is a lot of talk of so-called Imposter Syndrome. I’ve certainly felt it there, but I’ve felt it in this respect too – how can I spend so much time writing about sex but feel uncomfortable discussing solo vaginal training? And yet I didn’t want to force myself to write about it. If I felt there was a new line being crossed then I was going to cross it slowly and thoughtfully. But I did want to cross it eventually. The rediscovery of this pain has opened up a whole load of new questions, like was my pain ever hormonal? Did the pill actually fix something or did my pain just improve because more time had passed since the last time I had penetrative sex? The other feeling of imposter syndrome came from the fact I had restarted the pain myself. Should I devalue this pain because I had unknowingly but voluntarily made it worse? These questions haven’t gone away and I think this part of the story is crucial if I’m going to tell the next part. And though it does continue on from the #Periodically blogs, which aren’t going anywhere, I’m going to do so under a new banner: Pleasure Moans. 

    This blog is already way too long so I’m going to end it here. It’s obviously not the end of this (never-ending) story. I didn’t want this post to be quite so depressing but it is what it is. I promise the second half of this ‘episode’ is more constructive and angry and funny. I’ll try to write it soon, rather than leaving it another four months, but I’m making no promises. Thank you as always for your support, kind words and patience!