What a bloody mess!

This post is about periods. It is personal and somewhat more visceral than the things I usually write, so if you don’t like descriptions of blood and gynaecological issues, you might want to skip it. It does feel a bit uncomfortable to share something that feels quite private, so I have waited a while to click post. But I want the information to be out there for other people to find, and to encourage research about the impacts of hormonal contraceptives on women’s wellbeing, so I wanted to share my personal experience. And I figured that I wanted to support other people who have spoken out, like Caitlin Moran and Naga Munchetty.

I’ve never had easy periods. Since being a teenager I’ve had marked PMS the day before, with aching belly and back, tearfulness, labile mood, moments of anxiety and irritability, as well as an increased risk of migraine. Over the decade since having children (which my Mum had always told me was the end of her period pains) they got worse. I would often experiencing clusters of sharp “spike” pains as my period approached, which seemed as if they sent needles from womb to bowel and could double me over in pain, and make it impossible to get comfortable, but were thankfully intermittent and would rarely stick around for more than a few hours. During the actual period days I would get disconcerting numbness in my upper legs, as well as abdominal pains which were almost disabling on the first day of my period, and would often transmit through my lower back. They were also associated with changes to my energy level, appetite and mood. Doctors didn’t seem to think this was a medical issue, and the only medication I tried led to cramps so severe I was curled foetal on the floor for an hour, so I never took a second dose. By trial and error I learnt that heat around my midriff seems to help, so at times I would need to retreat to bed, or my last resort of sitting in a hot bath for hours on end. When it comes to medication Ibuprofen helps the most, but I often need to combine it with prescription strength co-codamol to manage the first day.

I never really thought about how my periods compared to other women, or whether my experience was normal or a condition like dysmenorrhea or menorrhagia. I guess I just accepted that I would always have period pains, and tried to schedule my life so I didn’t put anything important on the day my period was due or anything that might need a level head the day beforehand. I’d been brought up that periods were something private, that you didn’t talk about with others, so I generally tried not to complain about it. This was reinforced by a head of year that would make me run around the school field if I asked to be excused from class in secondary school when my legs went numb and the level of discomfort prohibited me from being able to sit in the classroom. She said exercise was good for period pains, which may be true, but I suspect she just wanted the overweight girl to stop complaining and get extra exercise.

After having twins I had heavier periods with more marked blood clots, so I joked to my husband about bleeding for two. I become anaemic a few times, perhaps because I’m vegetarian and my iron stores were depleted by the twin pregnancy and never fully restored. I don’t know for sure, but I was told to take vitamins with iron every day, and have done so reliably for several years now. On the good side my periods were always as predictable as clockwork, and using a menstrual cup has helped a lot with the discomfort and length of my periods, as well as reducing the risk of embarrassing leaks (and being more ecologically sound). As a result the pain rarely lasts after the first day or two, and the period itself is short and usually tails off after three days. That gives me 24 good days per month, and only two days that seriously interfere with my functioning. I can normally manage to do some work even on the worst days if I take painkillers and wear soft warm clothing around my abdomen, but my functioning is definitely reduced and given the choice a warm bath, or a duvet day is better.

However, in 2017 I mentioned my heavy periods and the fact I get marked period pain to my GP, who suggested I try a hormonal IUD, telling me these much reduce bleeding and stop it altogether for a large proportion of women. I had previously tried the Mirena in 2002, long before having children, but had found it uncomfortable and asked for it to be removed after a few weeks. However this time the GP said it would be much more comfortable since I had carried twins and delivered them naturally (albeit prematurely) so I agreed to give it another go. After a ridiculous delay of nearly a year to find an appointment when it could be fitted at my GP practice, I found a sexual health clinic and booked an appointment during June 2018. My GP had prescribed a Mirena and a Jaydess, and I had collected both and took them to be fitted. There was no mention of potential side-effects in any of the conversations I had with the GP or the clinic where it was fitted, although I was told to take a painkiller just before it was fitted, as they said “for some people it isn’t a comfortable process”. I think I had also read that there might be some cramps whilst my body adjusted to it.

The first problem was the fitting. It hurt. Enough to make me considerably uncomfortable. It was a right-to-the-nerves-at-the-core-of-my-being-do-not-pass-go pain that was different to ordinary pain, of which I’m normally pretty tolerant. The nurse and care assistant tried to make conversation to distract me, but the pain meant I kept losing concentration and wasn’t really able to talk properly, and I felt like I was going to faint at several points. It hurt being dilated. It hurt being measured. It hurt when the nurse tried to fit the Mirena and removed it when it didn’t fit correctly, and then it hurt when he inserted the Jaydess. He said my cervix spasmed, and that the whole area is very near the vasovagal nerve and can be very sensitive. But once he had finished and removed the speculum I had high hopes that I’d done the hardest part. As I drove home the painkillers kicked in and the pain settled to much like the level of period pains.

However, that period pain feeling stuck around in variable intensity for much of the time I had the Jaydess in, which ended up being nearly four months. I also had aches and spike pains throughout the month, to the point I needed painkillers on more days than not. There were times it felt painful to stand, or that I couldn’t sleep for the pain. I got hot flushes. My boobs ached for three weeks out of every four, to the point they were tender to the touch and hurt if I took my bra off. There was severe bloating and intermittent nausea, and a feeling like having a perpetual bug of some kind. I had loose bowels and painful stomach cramps after eating that meant I couldn’t enjoy food. I had lots of headaches, and a kind of aching in my bones and joints (particularly my hip joints) that made me feel old and unwell. My hair became really greasy, to the point it was visible by the end of the day, and looked awful on day two, when previously it was fine for two or three days and I never had to think about it between the times I went swimming. I got painful cystic acne on my face, shoulders, back and bum. Not in huge numbers, but there was always a new zit or two visible in the mirror each day, they took several days to rise to the surface of my skin, and it increasingly felt uncomfortable (when prior to the IUD I’d only get a couple of visible spots per month, and they were never painful).

It also changed my mood. Like the worst examples of how I had been on the day before my period before, I found myself on the verge of tears about anything sentimental or sad, and my feelings felt less rational and less within my control. I had patches of acute anxiety, and generally lower mood, with greater irritability. That may have been compounded by the fact I had weird dreams and disrupted sleep, and would often wake in the night with stomach pains, cramps or aching and find it hard to get back to sleep. And to cap it all my periods were longer and heavier than before, with a shorter gap in between, leaving me only one week of feeling relatively good, and even that was characterised with lots of low level aches and pains. A minor additional problem was I couldn’t reach the coil’s strings to check it. I don’t know if that is my short fingers or inflexibility, my slightly retroverted cervix, or whether they were clipped a bit short. But it was a bit unnerving to be told to check it and not to be able to.

Weirdly, I was prepared to tolerate all that for month after month on the basis that it might get better over time and reach a point where the side effects disappeared and the promised effects appeared. They had told me to stick with it, and that things would get better, and I was determined to do so. But the symptoms seemed to get worse month by month, rather than reduce or resolve. The final straw was that my vision started to blur. I noticed that I couldn’t see the TV properly from the sofa, and was moving forwards to sit on the floor closer to the screen. I couldn’t see the road signs or number plates when driving until much closer to them than usual. And anything at a distance seemed fuzzy and indistinct. That made no sense, given I’d just had an eye test that said my vision was fine only a couple of weeks before I got the IUD. In fact, my prescription had not changed for over a decade, and I’d been wearing the same contact lenses and glasses for as long as I could remember. My eyes started to feel dry in the evening, and my contact lenses also started to feel uncomfortable, after being almost unaware of wearing them for most of the last thirty years. I read online that levonorgestrel can affect your eyes. So I went back to the optician. He said there was nothing overt wrong that he could measure, except that my astigmatism, which had previously been below the level at which they correct it, had markedly increased and I now needed toric lenses to compensate for this. He didn’t think it was related to the Jaydess, but the sudden change seemed very strange.

Looking up the side effects of Jaydess/Mirena made me realise quite how many I was experiencing, and how this wasn’t typical of the official reported level of side effects, or the miraculously lighter and easier periods I had been promised. So I phoned the GP, who tried to get me to persist, promising it would settle, and really didn’t seem to listen to or appreciate the level of discomfort it was causing. After nearly four months I insisted it was removed. That actually went pretty smoothly. I managed to get an appointment with the one female GP with an interest in contraception. She listened and said it didn’t seem to suit me and agreed to remove it on the spot as I had not had unprotected sex in the prior seven days (to be honest, it had been a pretty effective contraceptive in that it put me off sex altogether for the entire time that sharp anchor of metal was inside me). The removal was equivalent to having a smear test. The awkwardness and discomfort of the speculum, then one second of that direct-to-the-vagus-nerve pain and it was done. Afterwards mild aching that was relieved by analgesics. So I figured it had gone pretty well. Again, there was no warning from the GP or in anything I was given to read of any symptoms likely to appear because of the artificial hormones disappearing from my body.

However, that mild aching came and went for the next few days, and then I started to get cramps and traces of dark brown blood as my period approached. That developed into a fairly typical PMS level of discomfort, but the volume of blood was still very small and much darker than usual. Typically my periods arrive quite quickly after the PMS and cramps, with two days of moderately heavy flow (about 40-60ml per 24 hours) and the bleeding then tapers off during the third day (making a total volume of about 80-120ml shed during the whole period). Hence the use of a femmecup, which can normally see me through the night, or through a working day, without any problems. However this time around my period started slowly, but then on day three there was suddenly large volumes of thin bright red liquid blood like the stuff they squirt around for a horror b-movie. At times it filled the 30ml of my menstrual cup in under an hour and if I didn’t catch it, this unusually liquid blood then leaked out onto my clothing or bedding spreading obvious bright red stains. No form of sanitary protection helped. I had more leaks and mess in that two days than in the last decade of periods combined, and had to change enough clothing and launder enough bedding to run the washing machine twice (both times having to interrupt it to add more items after the wash cycle had started). I’d estimate I bled 250ml of this thin bright red blood over 48 hours – that’s seven times the volume of an average woman’s period, and more than double my usual total in a very short period of time. It was incapacitating because of the need to empty the cup so often and the risk of embarrassing leaks, but it didn’t hurt at all. I just felt a little nauseous and faint, which might just have been a reaction to seeing so much blood. And no matter how careful I was it kept creating crime scenes for a low budget horror movie.

It would have utterly freaked me out, and perhaps even sent me running to A&E, except that I found other reports of similar bleeding after the removal of Mirena on the internet. Thankfully after the second day of flooding it petered out. I’d guess I bled near 300ml in total, which is ten times a typical period and nearly the amount I donate from my veins when I give blood as a donor. I really think they should warn women about that, as that much blood without warning has the potential to be pretty traumatic.

By then I had read about the “Mirena crash” and was prepared for massive emotional symptoms that might spiral me into a depression, but thankfully they were not too bad compared to what others report – perhaps because (like any review site) it is only the more extreme experiences that motivate people to write about them, or perhaps I’m normalised to some hormonal symptoms, or because the Jaydess uses lower doses of hormone, or because it had only been in for three months. I did have increased emotional lability, to an extent that was very out of character for me and created a couple of protracted emotional confrontations with family members about minor things I would normally have let pass without comment. Plus for a week or two I was in a generally more negative headspace. Possibly the most disconcerting element was patches of free-floating anxiety; I’d get a sudden sense of having remembered something I should have done, or had done really badly, or that had made someone else react really negatively to me, or foreboding about something terrible happening, but without anything to pin it to. And then, gradually, it settled back down to more or less how things had been before. The breast ache, abdominal pain and cystic acne dispersed and I went back to the prior level of period pain I had been having for the decades before.

About 18 months ago I finally saw an endocrinologist who tested lots of things and didn’t find anything he needed to treat, but referred me on to a gynecologist. Whilst I hadn’t had symptoms I’d associate with menopause, like hot flushes or cessation of periods, loss of libido or vaginal dryness, she seemed particularly swayed by the fact I was 45, had missed one period (albeit with timing that seemed related to other stress/health issues) and had experienced anxiety, minor memory issues, and joint stiffness (though the latter has been present since an RTA in 2015), and concluded the underlying cause of all my symptoms was probably perimenopause. She recommended I try HRT – even though most of the symptoms I reported had been the same throughout the prior decade, and many had been fairly consistent since I was about 15 years old. I was cautious, given the one ingredient in the HRT is the same as the hormone used in the coil, but I didn’t have any better options and decided to give it a go.

I went onto HRT just as the nation went into lockdown for the coronavirus pandemic, so it was hard to pick out what was the result of the acute anxiety I felt at that point and what was side effects of starting the meds. Subsequently it has been hard to unpick the impact of the HRT from the impact of pandemic lifestyle changes. When I weigh up the positive and negative changes I have observed, it is a fairly close-run contest, but overall I think it has more benefits than costs, particularly in my mental state. On the good side, I have less marked emotional swings prior to my period, and my anxiety has reduced. My periods are slightly less heavy, and there has been a small reduction in pain. On the down side, my skin is now very dry and I seem much more prone to heat rash in my armpits and groin, and thrush-like discomfort. I’ve also put on some extra (and very much unwanted) weight – but I’ve been much less physically active as I haven’t been swimming or to the gym. Given the risk of stroke, I decided I’d rather be on patches than tablets, but was closed to gynecology and none of the GPs felt able to review my HRT since the female partner left. However, I kept pushing and eventually did get the patches, and they seem to have continued the positive effects whilst they have reduced the heat rash (and risk of stroke). I can also slightly extend the days I use the first type (which don’t have negative effects) and shorten the other type. And I have returned to predictable as clockwork menstrual cycle.

Whilst clearly everyone’s experiences of health conditions and treatments are different (and I’ve known several colleagues who raved about Mirena) there are some wider themes that I think are more universal. I’d say my experience of putting up and shutting up is probably quite typical, in that lots of women just get on with things. We are taught not to moan. Women’s reports of pain are taken less seriously, and conditions like PCOS and endometriosis are massively underserved with unreasonably delayed diagnosis and limited treatment options. Medical research treats men as the default, and sees women as innately skewed by our hormones. The funders setting priorities and the people leading the research are more often male, so they don’t give women’s health issues the same level of priority. Contraception is seen as a problem women must shoulder the burden of, and menopause something shameful we must hide and suffer in silence (Davina McCall’s TV program on this topic captured it well). These issues really aren’t things men would be expected to tolerate. I was really struck by the furore about the few awful cases in which people had blood clots after receiving their covid vaccination, and how the probability was a fraction of that caused by the contraceptive pills millions of women take without the same level of public or professional concern. Women’s health is too often forgotten and devalued. No wonder periods and contraception are so poorly addressed, and so many women suffer in silence. So I’ve broken my silence, and I hope I can encourage you to break yours, because talking about this stuff will show that it exists and impacts millions of people.

2 thoughts on “What a bloody mess!

  1. Ruth Greenhalgh says:

    Thank you for posting this, Miriam. This is an area that, historically, has been overlooked or consigned to the “put up or shut up” bin. For too long it has been assumed that women should just grin and bear the pain and discomfort of gynaecological difficulties. I make no apologies for being graphic in my reply here – these things need voicing. I never had a regular menstrual cycle – ever. Consequently, when my husband and I struggled to conceive the automatic assumption was that it was my fault. I was subject to a whole raft of invasive, degrading and painful tests, largely with no pain relief ever offered. Compare that to my husband having to give one semen sample! Smear tests were always excruciatingly painful but, again. no pain relief offered. I had one nurse tell me “not to be a silly girl – it’s not that painful”!!! I sincerely hope more women start speaking up about this. We have been ignored for too long.

    Liked by 1 person

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