Category: Hormones & acne

  • Timing (and science!) is everything

    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.

  • Review: So Hormonal

    Review: So Hormonal

    “A collection of personal essays detailing the various roles that hormones play in our daily lives” – SOLD! It was no surprise to those who know me that as soon as I learnt that this book – So Hormonal, edited by Emily Horgan and Zachary Dickson – was coming into existence through a crowd-funding campaign, during the pandemic no less, that I had to have it (or at least pre-order and patiently wait for it). And for those that don’t know me, in addition to my fascination with hormones on this blog, I also wrote my masters thesis on the feminist value of the ongoing cultural backlash against hormonal contraception, where I started to theorise a little something called Hormonal Feminism. So in short: I was keen.

    All this to say, I’ve read a lot of personal writing on hormones, but this is the most comprehensive anthology on hormonal experiences that I have come across. So often ‘the hormonal experience’ is pinned down to either cis women’s (often negative) experiences of menstruation, contraception, pregnancy and menopause or trans* people’s experiences of puberty and hormone therapy. And there are, of course, so many meaningful and important stories under those umbrellas, many of which are featured in this collection, but So Hormonal takes things a step further. It is deeply refreshing to find stories about hormones from cis men, next to essays about hormonal joy, fertility, pain, neurodiversity, osteoporosis, Addison’s disease, PMDD and so much more. The book represents ‘the hormonal experience’ for what it really is: bodies in flux, also known as being human.

    So Hormonal strikes a great balance between the personal and the medical, the technical, which matters, as is expertly explained in Sonja Erikainen, Andrea Ford, Roslyn Malcolm and Lisa Raeder’s essay Telling Hormonal Stories. They write:

    Hormones are ‘made’ and ‘remade’ in both scientific and cultural stories. Indeed, scientific and cultural stories are constantly in conversation with each other.

    Sonja Erikainen, Andrea Ford, Roslyn Malcolm & Lisa Raeder

    I will always be curious about the gendering of hormones, individually and collectively, and the above quote perfectly sums up why it is vital all hormonal stories are told, so that ‘hormonal’ can cease to be a negative adjective associated solely with women, femaleness and adolescence, because nothing could be further from the truth.

    This book is for everyone – it’s only shortcoming in that regard potentially comes in terms of location, though it isn’t always clear. There might be stories where you relate to something directly. For example, in Sonali Misra’s essay ‘Ten Years in the Making: conversations with partners about polycystic ovary syndrome’, she writes:

    I’ve been forced to add an extra step in the dating timeline, a disclaimer of sorts, due to the PCOS.

    Sonali Misra

    Something I know oh too well, thanks to endometriosis and vaginismus. Again with Aifric Kyne’s essay ‘I’m wearing Docs, Michael: on thyroids, tallness, and teenage suffering’ I was blown away by how Kyne seemed to have perfectly described some of my feelings towards height, eating, control and ignoring my body. Yet still, if you find nothing you relate to personally, the book is full of stories that will move you in ways you cannot anticipate. Some of my favourite essays in the collection I can’t even begin to relate to. While I could honestly just list the contents page, some stand out, including: Tyler Christie’s ‘Getting Off the Back Foot with Male Fertility Health’, James Hudson’s ‘Wanna see my Party Trick? *Stops Taking Testosterone*’, ‘Rianna Walcott’s ‘Banana-Poultices: Black British Attitudes to Healthcare and Medication’.

    And then there is the political, burning its way through the book like a hot flush. Many of the essays were written during the COVID-19 pandemic, and it shows. Healthcare systems that have time and again failed in regards to hormonal care, have struggled to deliver the very basic care needed even more during 2020. Jo Ross-Barrett’s essay ‘A period piece: on PCOS, PMDD, and the NHS in 2020’ closes with a powerful call for the UK’s healthcare system to do better: “I wanted to share my story so that people could see the human impact of intersectional feminist failings within the NHS. The NHS needs to offer timely and appropriate person-centred care that focusses on the individual in a holistic manner”. And then in the piece ‘Roaccutane Tubes: On navigating puberty hormones and bodily changes in the wake of sexual abuse’, Madeleine Dunne boldly writes:

    Until a point in time where healthcare providers and medical science are prepared to actually see female bodies, trans bodies, and Black bodies as being valid, to listen to the voices coming from those bodies, and to hear, act on, and validate those experiences, I worry that we are trapped in a cycle of gatekeeping, dismissal, misdiagnoses, inappropriate treatments, and loss of lives.

    Madeleine Dunne

    The quote speaks for itself, as does the entire book, and I recommend you read it.

    So Hormonal is published by the independent publisher Monstrous Regiment, based in Edinburgh, you can buy the book directly from them here.

    While I have you, I’ll take the chance to implore you to support the #ButNotMaternity campaign, which is lobbying for change in regards to the hypocritical and sexist measures than remain in place for people giving birth in the UK during the COVID-19 pandemic, measures that are leading to traumatic birth experiences. You can learn more about the campaign here and sign a related petition here. I’d also like to draw your attention to this article about a U.S. study where black babies were found to be more likely to survive when cared for by black doctors, demonstrating just how much work is still to be done in rallying against conscious and unconscious biases in medicine.

  • 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.