Tag: Female Sexuality

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).

‘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.

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.

Of course, summer arrived the day after my op so I’ll be sporting some DVT stocking tan lines this year!
April 20, 2019
“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.

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!

February 25, 2019
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!
February 11, 2019