Tag: Female Reproductive Health

Timing (and science!) is everything

So a couple of months on from writing about the overwhelming sensations conjured by a team of researchers, doctors and midwives actually having a plan for investigating and hopefully treating my endometriosis, I still haven’t written about the plan itself. So in theory, that’s what this blog is about but as usual, we’ll see where else it goes.

I should start by saying that the timing of the plan is… complicated. 2021 has been a rough old year so far (seriously, I thought 2020 was bad) and by the time I got to my expedited appointment with the endo specialist, I had decided that if the appointment wasn’t a radical change of circumstance, then it was time for me to seriously consider returning to the UK. But, as you know, the appointment did present a radical turn of events. So when the midwife asked me, moments after the gynaecologist had presented *the plan*, ‘ and just to check, you are planning to stay in Belgium, right?’ I found myself saying yes. It seemed quite a simple answer at the time but in practice, it’s been a bit trickier.

The plan, then, is some serious investigative work before any more surgery. Music to my ears! My doctor was honest about the fact that ‘this does end in surgery’ but that by using as many resources as possible we can try to maximise the impact of the surgery by knowing exactly where I have endometriosis in advance. The first investigation is a type of internal ultrasound using ‘International Deep Endometriosis Analysis’ (IDEA). This special, and I am expecting painful, ultrasound is part of a clinical study. Basically, the scans and the interpretation of them will be compared with what is actually found inside me during surgery. The results of the wider study will inform if and how ultrasounds using this technique can offer a less invasive, non-surgical way of diagnosing endo. I’ve never signed an informed consent form quicker.

The second investigation is an MRI. For years, doctor friends have been telling me to get an MRI, even privately if I had to. The problem was, even if I found the funds for an MRI, at no point had I been under the care of a doctor who could interpret anything about endometriosis from an MRI. That’s all changed now, though. This MRI won’t be pleasant, like for the colonoscopy in March, it will involve a full bowel prep and during the scan I will be filled with various fluids via my anus and vagina. Can you think of a better way of spending your summer? Ah, yes that was the crux. Summer.

It was, is, a completely manageable crux. Both scans happen to be at various points in the summer. Which would so not be even the slightest problem, if it wasn’t for the fact that we’re still in the middle of a pandemic and I haven’t seen my family or friends at home in the UK yet this year, and many of them for much, much longer than that. In line with Brussels’ summers, I had set my heart on spending July and August working from home and reuniting with family in the UK but with quarantine restrictions and the unfortunate timing of the scans, that idea has been greatly downsized and, at times, seemed impossible. Now that I’m closer to getting home, even if it’s just for a little while, I’m finding it easier to manage but the last months have been frustrating and painful, knowing that if I stopped seeking treatment for this stupid condition then not only could I spend the summer with my family but I could consider moving back to the UK. During the last few months, I have often felt like I am inflicting unnecessary emotional pain on myself and my loved ones all for a slim chance of treating endometriosis.

Side note: it has been suggested many times this year that I move home and start seeking treatment in the UK again. But not only have I tried that twice with, let’s face it, pretty poor results but it would mean starting the clock again at a far slower pace, and that’s not to mention the professional and financial consequences. If I’m going to run on curative time, fine, but I’m not going to do so indefinitely.

Anyway, this is a problem for Right Now Hilary, stuck in Belgium without her family, but I can only hope that Future Hilary will be grateful. Persevering with life in Belgium to stay on this doctor’s books continues to feel like the right decision but it’s been a harsh reminder that sometimes, the right decision doesn’t feel like a good decision.

Once I’ve had the scans I will then, in the autumn, meet my gynaecologist again and discuss what kind of surgery route to go down. There may be more options when it comes to it but the two options she put to me in April were: standard laparoscopy performed by a gynaecologist to excise endometriosis from the reproductive system; or a more intense, interdisciplinary laparoscopy performed by a gynaecologist, urologist and/or gastroenterologist to excise endometriosis from additional organs, like the bowel, bladder and appendix. It’s really exciting science, medicine and surgery! Scary too though, especially if COVID will continue to limit my support system – thank god for good friends in Brussels. As always, I am managing my expectations but I’m happy to even be a guinea pig.

Being a guinea pig also has some other benefits because it gives me an indication of when I might have surgery. This is because the clinical study design stipulates that the surgery takes place no more than a year after the IDEA ultrasound. Timing really is everything, at the moment.

The plan didn’t stop there though. There was great concern from my GP, GI, new gynaecologist (and me) about the persistence and increasing frequency of rectal bleeding. For whatever reason, primary or secondary, it seemed I was bleeding out my arse when my pelvic pain flared up or when I got stressed, even though we have managed to turn off all vaginal bleeding with a Mirena coil. Something I find quite ironic, as back in the days of incredibly heavy periods, I used to say, ‘christ, I’m bleeding out my arse!’ Ah, Past Hilary, if only you knew what was to come.

For this reason, I was encouraged to do exactly what I didn’t want to do and go on a low-dose combined hormonal contraceptive, despite already having a hormonal coil. The logic behind this is known as ‘ovariostase’ in Dutch and French (I’m not sure about English, ovariostasis, maybe?) Essentially, it’s to turn my ovaries off and stop them from producing hormones. High on *the plan,* I said yes and then cried about it for days and refused to take what is a very expensive brand of the pill for weeks. As you might have gathered, my mood was very low and I was also worried that if I went on the pill while I was already down, I might unfairly blame the pill and unnecessarily fuel my pill-scepticism further. Eventually, after even more rectal bleeding, I took the first pill. And I’ve taken it every day since.

Honestly, I am not happy about it, nor am I happy with my new pill-induced boobs and the other usual side effects but I am taking it on the assurance of all my doctors that this is only a temporary measure to help me now. For the first time, no one is under the delusion that the pill is a permanent solution. The bleeding has lessened significantly and when I began to notice that I worried that, like my gynaecologist back in Essex, they might say, ‘well, there we go, job done.’ What’s actually happened is that it confirmed that there is a link between my hormones and/or endometriosis and the rectal bleeding. My instincts were right. Again.

So that’s the plan, COVID-permitting, and let me tell you, recent events since I wrote the first draft of this blog has really rubbed the weight of that condition in… What’s nice is that although these upcoming scans are going to be uncomfortable and probably painful, they shouldn’t require any decision making on my part yet. That’s a great comfort – there have been far too many grown up decisions to make lately. Bring on a summer of scans, being reunited with my dog and avoiding major life choices.

This week the UK government will debate the National Borders Bill, which fails to protect vulnerable refugees and will even go on to treat them as criminals. If you’re a British citizen, the Refugee Council has prepared a template email to send to your MP, imploring them to speak out and up for refugees, learn more here.

July 18, 2021
“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