Back in December I had my three-yearly cervical smear. I got the results a couple of weeks ago and apparently there are ‘minor changes’, which means that I need another test in about 6 months and should let my doctor know if I have any unusual symptoms, like bleeding between periods. So far, no major panic. I figured I should make an appointment with my doctor about the random bleeding I’d been experiencing recently and get it checked out. None of this was terrifying.
Then I saw the NHS Leaflet of Fear and Judgment that accompanied the pleasant non-frightening letter from my GP. The first page of the leaflet is basically WOO HOO! SEXUALLY TRANSMITTED FILTH AND CANCER! to the point where you don’t even really take in anything else after that. But they have pictures of ladies in white t-shirts pretending to have conversations with each other, so that’s nice. Or something.
It’s probably worth mentioning at this point, in case you’re not a regular reader and aren’t aware of this aspect of my existence, that I am utterly terrified of having to deal with medical professionals. My own doctor is absolutely lovely. She’s been my GP for a few years, she knows stuff about M.E. and she treats me like an adult with a functioning brain. Prior to her, I have had SO many horrendous experiences with doctors, especially related to M.E. and contraceptive stuff and things, and every time I see a doctor who is not my own GP, I get this sinking feeling that they will talk down to me, not take anything I say seriously, treat me like I’m delusional and make ridiculous negative assumptions about my lifestyle based on my appearance. Because that is what has actually happened a lot of times. Even though rationally I know that I will not have this experience with my own doctor, I still get the fear.
I’ve also experienced quite a bit of “Don’t be silly dear, nothing’s wrong” only for there to actually be something pretty major wrong. This includes, but is not limited to, the time when “You’re just stressed about your exams” was actually glandular fever, followed by post-viral exhaustion which took 6 months to recover from. And the time when “Well, your leg probably isn’t broken” wasn’t accurate, in that my leg actually was broken. And the time when “Just take some painkillers and go back to work” ended up being M.E. which I’ve now had for 9 years.
It took two weeks to get an appointment with my own doctor because it had to be on an afternoon rather than a morning, and at a time when I was already off work, as I can’t afford to take time off at the moment. I work until 9pm and a random comparatively early morning where I have to go somewhere and do something would require a couple of days off afterwards to recover from and get back to my normal(ish) routine. So I’ve had two weeks to go through the cycle of denial-obsession-terror-logic a number of times. I’ve been from “Everything’s fine” to “I can’t stop thinking about this” to “What if this is the start of something truly awful?” to “Be sensible, it’s probably going to be alright” so many times I’ve lost count.
I was aware that the whole bleeding between periods thing can be caused by the Mirena IUD that I have. Prior to it, I’d been on the pill (which I had to stop taking because of the type of migraines I get), the mini-pill (which made me put on loads of weight, cry all the time, eat nothing but cheesecake and suddenly get acne after never having a spot in my life) and then the copper coil (which resulted in such heavy bleeding that I did nothing but sleep, puke and change tampons every half hour for a week and a half each month). When the Mirena was suggested as an option a few years ago, I did some research and noticed that there were some potential side effects, but since I had basically run out of other options for contraception at this point, I went for it.
My husband and I are childfree (neither of us have ever wanted children) and seeing how much horror I’d been through with contraception, he had attempted to have a vasectomy a number of times in the past, but since everyone MUST HAVE THE BABIES according to the NHS, he wasn’t afforded agency over his own body to make this decision. One doctor even said to him, in front of me, “What if your wife died and you married someone else who did want children?”. She just looked confused when he reiterated that HE didn’t want children, not seeming to grasp that he, as an individual, was making a choice. This is a whole other issue that I’m not even getting into here but suffice to say there is SO much wrong with that entire system.
Everything seemed fine(ish) with the first Mirena I had. My periods stopped after a few months and I didn’t notice anything particularly awful going on. It came to the end of it’s life, so I had it replaced with another one a couple of years ago. A few weeks later, I suddenly started having violent cramps and bleeding A LOT. It was Christmas time so I called NHS 24 to ask for advice about what to do while I waited for the family planning clinic to reopen after the festival season. The response was “Go to hospital. NOW”. My IUD had shifted around a bit inside me so after an uncomfortable night in hospital, it got replaced with yet another one.
My periods came back. I also started bleeding for a day or two at a time, at completely random times, although it was hard to tell when I was actually meant to be bleeding because my cycle was so irregular that it could barely be called a cycle. I had vicious PMS symptoms, including aching breasts, violent cramps in my back and abdomen, shooting pains in what felt like my womb (it can be hard to discern the source of internal pain like that) and mood swings like you wouldn’t believe. I told myself that this was no big deal because hey, loads of women get PMS and because I could identify what it was and it wasn’t killing me, I could deal with it. My migraines also got worse and more frequent, but I didn’t even register this as an issue because although it wasn’t normal for them to be so bad and happen so often, I have experienced migraines to some extent with varying frequency for most of my life.
I realised that I hadn’t actually looked for any information about the Mirena since before I had the first one installed (or whatever the word is for having plastic and hormones shoved into your uterus), so I did a bit of pre-doctor-visit info-hunting. HOLY CRAP. I have read literally hundreds of stories from other women over the last couple of weeks about side effects including…
- Bleeding between periods
- Back pain
- Abdominal and pelvic pain
- Depression and mood swings
- Pain during and after sex
- Weight gain and not being able to lose weight
- Ovarian cysts
I don’t know if I missed all this stuff the first time I looked into the Mirena, or if I saw it and figured “Whatever, I don’t have any options left”, but suddenly things started to fit together in my mind. I have no idea if I have ovarian cysts. I hope I don’t! But everything else, ALL of those other things, fit with my experience perfectly. To be fair, I already had migraines (although they have been worse over the last year or so), and the back pain, fatigue and even mood disturbance is pretty much part and parcel of having M.E., but it suddenly hit me – what if that stuff might be less severe if I didn’t have the Mirena?
I feel kind of stupid for having never connected all those dots before. Obviously I’ve seen my doctor for M.E.-related stuff and other things, as well as various other docs in the context of contraception and gyne-things, plenty of times in the last few years and have talked about all those symptoms at one time or other, although probably not all at once. When mentioned in isolation, they’re just possible side effects of pretty much any form of contraception, or just part of having M.E. or a fluctuation in something I was already experiencing.
I think my doctor actually does IUD removals from the GP surgery, which is awesome because the family planning clinic is in the centre of town and I can’t afford to take the time I’d need off work to go there and then recover afterwards. I’m going to ask my doctor how soon I can have the Mirena removed and I am getting that damn thing out of my body. Maybe nothing will change but what if it does? What if my cycle gets more regular and my back hurts less and I am less exhausted all the time and the PMS is less severe and my migraines become less frequent and my skin goes back to normal and I can lose weight? I’m not exaggerating here – that would literally change my life, in a really big way.
I know this has been a really long post. I wrote it mostly because I needed to get this stuff out of my head. I spent most of yesterday trying to subdue the panic attacks that happen before going to the doctor and trying not to let cancer-fear take root in my brain. I didn’t sleep much last night and have been awake for hours, nursing low-level anxiety. I’m going to do my yoga, have a shower then go and DO THIS THING.