Tag: Sexual Health

  • 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!
  • “While you’re unconscious…” | Pleasure Moans #2

    “While you’re unconscious…” | Pleasure Moans #2

    There I was, sitting in the waiting room of my community hospital trying to read Papillion. I say trying because I was very distracted. It was my last week of term, I was, as I made clear in my last post, absolutely pooped. But more distracting than any of the assignments, deadlines and very real desire to finish Papillion was my concern for what was going to happen when I saw the gynaecologist.

    As discussed in the last blog, the impending appointment pushed me to take action for the first time in a few months. But until the night before I hadn’t actually given the appointment itself much thought. True to form, once I did I completely freaked myself out. Doing all the period, pain and penetration maths in my head I had come to the conclusion that my gynaecologist was going to want to do another diagnostic laparoscopy – keyhole surgery to look for endometriosis.

    Image result for algebra meme gif
    Me doing the period, pain and penetration maths

    How had I come to this conclusion? Because that’s the only other thing my local NHS has to offer, other than antidepressants, which I tried but weren’t for me. But also because since I started with this new gynae he hadn’t been convinced by the laparoscopy I had in Swansea back in 2017, but from what I could understand, the only reason for doubt was that he hadn’t performed it himself.

    Anyway, I was right. But not for the reasons I’d anticipated. He suggested antidepressants again, which I declined. So then he suggested something I didn’t even know was a thing. He wanted to examine me under anesthesia, since it’s hard to really get a good look at my innards with so much pain kicking about. And then… well, then this conversation happened:

    Dr: So when I do the examination under anaesthesia, I can stretch the vagina and see if that helps.
    Me: Sorry, stretch my what?
    Dr: Vagina
    Me: With what?
    Dr: What do you mean?
    Me: What would stretch my vagina with? 
    Dr: My hands.
    Me: ... 
    Me: And what’s that… procedure… called? 
    Dr: Oh it doesn’t have a name. It’s just part of ‘examination under anaesthesia.’ 
    Me: …
    Dr: And while you’re unconscious we might as well do another laparoscopy just to have a look around. 

    The more I think about this conversation the funnier/more ridiculous it seems. I was flabbergasted but this is the coolest and most collected I’ve ever been in an appointment like this, I asked loads of follow up questions, aired my doubts and concerns and he heard them all out and answered them as best he could. Many of my concerns were, are even, small little things, but when I look at the bigger picture holistically, these things add up. For example, the irony is not lost on me that in the process of trying to have pain free sex I’ve made myself feel incredibly unsexy – a resurgence of acne, surgical wounds that scarred weirdly, taking a drug that in the past has reduced my libido but in the present has given me erratic mood swings that I have to actively intervene to control. All pretty minor things, but when I consider what the point of all this is, which hasn’t been reached, I have to ask myself what price I’m willing to pay to get answers. My belly button’s starting to look normal again, do I really want to start from the beginning again?

    The other thing, that’s slightly bigger, is that having diagnostic surgery and not getting a diagnosis is a very surreal and difficult thing to process. Surgery and the recovery from it are painful – which is just so frustrating when it hasn’t done anything to help the underlying pain. I’ve tried and failed several times on the #Periodically blogs, but it’s a really difficult thing to articulate. You cause yourself additional pain and duress only to be told ‘there’s nothing wrong.’ That’s not a feeling I enjoy remembering and I don’t particularly want to experience it again.

    If I’m going to have another laparoscopy, I need a better reason that already being unconscious.

    But, this is the NHS in 2019 so if I say no and then find a better reason then in all likelihood it would take me a year to get to this point again. So I’m on the waiting list, mulling it over, very aware and reassured that I can withdraw my name from the waiting list at any point.

    I’ve sought counsel from just about everyone on this. Friends, family, my GP, support groups, random strangers on the Internet, academics and a brill gynaecologist I have the good fortune of knowing (thank you!) And all of their concerns echoed mine – there’s got to be a better reason to do another laparoscopy. I should also add, there were lots of raised eyebrows about the idea of having my vagina stretched. Worryingly, I can’t find any information about this having been done to anyone else, and given I apparently have a certain psychosexual vulnerability, it sounds like a stretching might do more harm than good.

    So I’m in the process of trying to get a second opinion from a London gynaecologist, which, while possible, is proving to be more complicated than me and my GP first thought. London hospitals are more likely to do more detailed/thorough scans (MRIs & ultrasounds by gyanes rather than radiologists) to check if there are any signs of endometriosis before surgical intervention. Unfortunately the wires have been crossed in my referral letter and I’ve been referred to a vulvology specialist, which is not what I want at all, but my doctor’s surgery have submitted the referral despite my protests and have said I have to talk to my GP if I want to alter it, which is fine, except my GP is booked up for the next month, meaning the referral I don’t want is likely to be processed in that time. It’s just a massive waste of time and money for everyone which is the last thing I want to do. As always, the admin side of this is really hard work and puts irritating little voices in your head that ask ‘is this stress really worth it?’ The jury’s still out. 

    I did not think we would be back at the ‘e‘ word, and I’m nervous about going down that path again. But November’s news that a special NHS report had found that there was ‘a demonstrable lack of understanding’ of endometriosis among Welsh health care providers (I had my first lap in Wales) has made me wonder whether double checking is a good idea after all.

    I change my mind every day about what I would do if my gynae’s office called me and told me I could have the laparoscopy tomorrow. Today I would say no, but ask me when I’m in more pain and I might say yes.

    Since I might be going back down the endometriosis route, you might be wondering why I decided to move this story over into Pleasure Moans and away from Periodically. I’ve been thinking a lot, academically and personally, about the interrelation and separation of sexual and reproductive health lately. This ‘situation’ is obviously both. But it’s also not. I am very aware that to get help faster I only have to rephrase what I’m saying to my doctors about my sexual health to make it about my reproductive health. My aims are to be able to have and enjoy sex again and to be in less pain day-to-day. In my current reality, this has very little to do with reproduction. For others, it’s a totally different situation with the same symptoms and goals. Plus, it may be that this is easier to say now that I’ve settled some of my menstrual issues. It’s complicated stuff, but the way we talk about it makes a huge difference to patient experience, and so this is how I’m choosing to tell this part of my story from now and for now.

    Thank you for all the encouragement about making this change. It’s been on my mind for a while and I’m feeling good about it!