Tag: chronic pelvic pain

  • New hope: I got a coil #Periodically 34

    New hope: I got a coil #Periodically 34

    See, I told you I wasn’t abandoning the #Periodically blogs for Pleasure Moans. I’m back here because despite the pill, the endometriosis diagnosis and pelvic physio my pain is still interrupting my daily life and even recently made me pass out while watching a performance of Henry IV Part One, so I desperately need a more long-term, semi-permanent solution, or at least an attempt at a solution, that doesn’t immediately involve more surgery. So, I’ve had a Mirena coil/IUS installed in my uterus.

    Image result for mirena coil gif

    I’ve spent a lot of time on the #Periodically blogs discussing my complicated feelings towards hormonal contraception – the broader culture of those discussions is actually the subject of my masters dissertation. Even though the process from second surgery to coil insertion was pretty quick (about three months), it was not a decision I took lightly. Yet my feelings remain much the same as when I wrote about going back on the pill, in that I am deliberately trying to mess with my cycle to improve my pain.

    Anyway. Before the surgery I was already coming around to the idea of having a Mirena coil fitted in the event that endometriosis was found. A Mirena coil is an intrauterine system (IUS) that sits at the bottom of the womb – it has two strings that pass through the cervix so you can check it is still in place. Mirena releases an artificial progesterone, Levonorgestrel, to thicken cervical mucus to slow sperm down, to (sometimes) stop ovulation and most importantly for me, it thins the lining of the womb. It lasts for five years. It’s used to help people with endometriosis because by thinning the lining of the womb, and potentially stopping periods altogether, it stops those patches of missed-placed endometrium-like tissue from building up and causing trouble. It’s not a cure, but the hope is that by stopping my periods for a few years then it might turn endo off for a little while too.

    This is a big deal for me. I’ve spoken in great detail about how, despite everything, I’m actually quite fond of periods, but I’ve weighed all the pros and cons and the Mirena coil still seemed like the best idea for now (plus let’s be honest, my body probably won’t actually do as it’s told and stop bleeding). My gynaecologist told me to expect six months of sporadic bleeding and pain, but a six month blip of increased pain for potentially four and a half years of relief seems like a reasonable (hmm) trade off. Both my gynae and my GP encouraged me to stay on the pill for the first two months of the coil to try and make the transition a bit smoother. I was pretty resistant to this idea, not wanting to make my skin or mood any worse by increasing my progesterone dosage, but after talking to people who did so successfully I’ve followed their advice.

    Once I made the decision, however, I had to acknowledge the fact that fitting it was not going to be easy. Ideally it would have been fitted while I was under for the laparoscopy in April, but because my surgeon was so convinced it wasn’t going to be endo he didn’t do the consent form for it. When I saw him for my post-op he thought it possible I might have to be put unconscious in order to fit it. I desperately wanted to avoid another general anaesthetic so soon after the last, but evidently a pelvic floor dysfunction that makes any kind of vaginal penetration incredibly painful and/or impossible, meant it was on the cards.

    The doctor in charge of IUS insertion at my local surgery was a new doctor to me, which made me a little wary but thankfully she was lovely. I explained my experience with painful (and frankly unsuccessful) pelvic examinations and sex and my motivations for getting a coil in the first place. She was super understanding and came up with an action plan: I would take some diazepam an hour before the insertion to try and relax my pelvic floor. If my body was still uncooperative she would not force the issue. I was to take the day off and have someone accompany me to and from the appointment.

    Well, as the beginning of this blog gives away, the coil was fitted but it was twice as complicated and a hell of a lot more painful that I expected it to be. The doctor decided to use an anaesthetic gel, but that didn’t seem to provide much relief. Both she and the nurse were really supportive throughout but honestly it was a little traumatic. Even though it all happened quickly, we had to try various different tactics, positions and speculums. I wish I could say it was fine and just a little uncomfortable but it was a 10/10 for pain, which felt something akin to my cervix being stapled. It seemed like I might vomit and/or pass out and so I was given some water and told to take my time. Thankfully this pain didn’t last long but it was immediately replaced by hot, heavy cramping. Excellent!

    A man clearly made up the post-coil insertion rules because while tampons were off the cards, sex was not, apparently. The doctor advised me to use condoms for a week, at which point I reminded her of what had just happened and why – sex is not on my radar at the moment.

    It’s been about 10 days since the insertion and the pain is still very intense. Weirdly, it’s mostly been awful period cramps all morning every morning, resulting in copious amounts of ibuprofen and co-codamol and many hot water bottles, but in the afternoon it settles and I’m more-or-less OK. The last few days have also involved some excruciating vaginal pain, so that’s new. I have hardly bled since, but I’m expecting that to hit when I come off the pill in a few weeks. As much as I’m hoping the transition period might be shorter than six months, I’m not holding my breath.

    I am excited though. Mostly at the prospect of long-term relief in the future but also at the possibility that coming off the pill might mean my acne improves. The hormones in the Mirena are localised to the pelvic area, meaning there’s a chance it won’t affect my skin in the same way a systemic approach like the pill does. I’m trying not to get my hopes up about this silver lining but honestly when I think about it I squeal with excitement.

    Since it was so painful I didn’t want to throw yet another horror story out into the world, but a few people have asked for details so there we go. I think the fact I had it fitted during a particularly lengthy flare-up was both a blessing and curse. Already being in pain meant I was motivated for relief and so I didn’t chicken out but it also means I haven’t had a break from pain in weeks which is exhausting and definitely messes with your head. Nevertheless, I’m trying to keep in mind something I wrote in my diary a few hours after it was inserted, especially as my birthday approaches. I wrote, ‘with the coil comes new hope. Hope that 24 will see me make up for time lost at 22 and 23’. It’s a bit Star Wars but still, I’ll drink to that.

  • 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.

    img_8827
    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.

     

    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… 

     

  • 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 LibidoI 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!