Just a little postette:

I’ve dutifully been taking the Norethisterone tablets the doc gave me last week, to stop the bleeding before I have the coil taken out tomorrow.
I haven’t bled for nearly a week, and feel better than I have for months, possibly years. I’m trying hard to force myself to take things easy and let my body fully recouperate but with Xmas looming that’s not easy

These tablets are a temporary thing, progesterone only, and a week’s worth isn’t going to have a massive effect on my mental health – what the new pill will be like, I still don’t know.

But I feel hopeful, if wary. This last week I’ve started to feel like ‘me’ again. I’ve been able to get up at a reasonable time, I have an appetite for the first time in at least 3 years and I can do stuff! Admittedly, ’stuff’ means housework and a bit of shopping – not exactly scaling Everest – but what joy just to be able to do those minor things without then having to spend yet another day in bed to recover.

Bliss.

Having spent the last two days welded to the sofa, feeling utterly sorry for myself and, having lost so much blood this week that I could hardly stand up, I finally caved and went back to the doctors this morning.

By this point, I would have cheerfully agreed if the doctor had suggested I remove my uterus myself, using a rusty knife and a plastic spoon, with no anaesthetic. Luckily, she is less of a drama queen than I am and has given me some tablets – Norethisterone, a synthetic progesterone – which should stop the bleeding in time for further investigations next week.

Next week will see the removal of my copper, non-hormonal, IUD and me going back on the pill (probably Yasmin). I have been very much against this for some time, as the pill – along with any other hormonal medicines – sends me quite loopy.
I am what might best be described as ‘bipolar-lite’, non medicated, and deal with the inevitable ups and downs by working my life around it, taking advantage of the highs and the energy they give me by throwing myself into work or decorating or somesuch and mitigating the lows by taking time out when I need to hide away and mope.

However the pill, despite trying different types and having breaks and all the other things you’re supposed to do to find the ‘right one for you’, seems to – without fail – amplify any low-level bonkersness, making the highs higher, the lows lower and the transition between the two extremes much swifter. Understandably, I’m wary of trying another hormone-based treatment and that’s before I even think about the other complications the pill can lead to, even in women with sound mental health.

Right now though, I’m willing to give it a go. The delightful B, my ever patient, ever understanding partner, has promised to keep a close eye on me. The trouble with anything mental is that it’s the mind and the perception of reality that’s affected and you don’t often realise that your feelings and behaviour have altered until it’s too late and folk are asking you why you stripped naked in a car park full of people in the middle of the day.

The doc thinks the IUD may be aggravating things, i.e that the IUD itself is poking into one of the fibroids. We discussed this in Jan when I got the full diagnosis but at that point I was only bleeding heavily for about 2 weeks out of four and the pain wasn’t crippling. Reluctant to go back on the pill, it was also fairly pointless having a Mirena type (hormonal) IUD fitted then – it takes about a year to settle in and at that point we were considering trying to start a family ‘in about a year’. I would have just got into some kind of menstrual routine when it would be removed and have to go through the whole year of settling again further down the line.

So I said I’d live with it. After all, I could hack it for a year, couldn’t I? And it would be worth it, knowing I wasn’t at risk of doing something stupid and irriversible due to being a bit of a mental case.

Well, in the ongoing fight between body and mind, body is winning. Or losing, depending on which way you look at it.
Our family plans are still up in the air for various, not terribly dramatic or interesting reasons, and so we must find a way to live with the issue until our plans are more solid. In the meatime, I am finding it increasingly difficult to work (I’m self employed and the one thing you MUST be, if self employed, is reliable) and our lives are consumed by pain and blood related shenanigans, getting in the way of everything.

So. Well aware that I’m putting my mental health at risk, I am nevertheless taking the gamble.

I’m also taking some time off from work. It’s about time for the annual xmas slump anyway. I’m running on empty at the moment and need to get rested. I also want to monitor how this new pill affects me over xmas and beyond and as I’ll be spending a lot of time with family and friends who know me pretty well they should be able to spot any major personality changes.

Once upon a time, I swore I would never prioritise anything above my mental health again. Looks like it’s time to break that promise.

Next post: The pill and other hormone treatments – real life experiences.

It’s Friday night and, after 2 week’s worth of ridiculously heavy bleeding followed by a full week of much needed recovery, me & the Mr were looking forward to a little, um, quality time tonight.

Last trip to the loo to freshen up and whaddya know? Oh yes. It’s back. That should kill the mood nicely. I’ll get the Scrabble board out then.

Here are two articles written by men about their wives fibroid experiences.

Frankie the Fibroid (the bouncing baby blob), posted by John of Crispy Neurons, contains some graphic images. (No, they are not swedish meatballs. Yes, they are that big)

Heather, I salute you.

My Wife’s Triumph, by Steven Hefferon over at Momshack, talks of  their success in reducing or eliminating symptoms by taking proteolytic enzymes. Something I’m hoping to investigate in more depth.

Why two male perspectives?

I aim to put together a regular round-up of ‘real life’ stories (how regular remains to be seen). While there’s no doubt that uterine fibroids affect women first and foremost (well, duh) and I will of course link to more stories by women than men, I do want to show the wider implications of troublesome fibroids – including how they can disrupt couples’ and families’ lives. Well written, empathic, real life accounts by sane men about their own experiences with ‘women’s health issues’ are rarer than hen’s teeth. I’d like to change that a little bit.

We’re in this together; my womb may be located only within my body but it sure as hell causes havoc for both me and my Mr. And just think, if men could openly and shamelessly share understanding and ways to support the women in their lives, it’d certainly take the pressure off a bit.

Fibroids can range in size from tiny pea sized to as large as a grapefruit (and bigger, I’m sure). Surgery options for different sizes all come with a risk or a certainty of being subsequently unable to become pregnant or carry a baby to term.

This article at Women’s Health gives some clear but basic info on possible surgeries for uterine fibroids.

Bad timing and the risks involved in even minor womb surgery make me reluctant to undergo an operation right now.

I’m 37 and have not yet had any kids. I know I’m ‘leaving it late’ in some people’s opinions but that’s just how it is. Sure, I could have had kids in previous relationships. The fact that I’m not still in either of those relationships makes me glad I didn’t. However, a few years ago I started a new relationship with one of my best friends and so far, so good. (The fibroids, at that point, had not yet moved from monthly to daily havoc and so there was nothing in the contract about how he would soon find himself as the male lead in an epic and bloody technicolor battle. Frankly, I’m surprised he’s still here)

So we’re in limbo right now, giving our relationship enough time to develop before we make the kids/no kids decision and trying not to be rushed into it by health related deadlines. Even so, I’ve pencilled in a cut-off point: If, by the time I’m 40, we’re either no closer to making a decision, have decided yes but it hasn’t happened despite trying, or the fibroids have made life so difficult that I can no longer function in any fruitful way, then I will start to consider the surgery options. On a bad day, having half my innards removed seems almost appealing.

But beyond that faintly drawn line in the sand, do I want a hysterectomy at 40? Which type you have all depends on the position of the fibroids. Best case scenarios suggest that, with the removal of ‘just’ the womb and with ovaries remaining intact, 5 years is the maximum I’d get before the menopause kicks in (which at around age 45, probably isn’t that far off anyway but do I want to hasten it at all?). With ovaries removed, however, the menopause hits hard, fast and immediately.

My chap is 8 years younger than me. If I suddenly become old before my time, due to the onset of menopause as a side effect of a hysterectomy, how will that affect us? Vanity does come into it but it’s not so much the visible but the physical and emotional aspects of ageing that I’m concerned about.

And what about the other ramifications? Again, depending on the position of the fibroid(s), more than the womb may need to be removed including the cervix and possibly some of the vaginal canal. Now, I’m pretty short as it is, in all aspects. Any shorter and my frisky mate’s going to discover that what once fit like a glove, now fits like a thimble. And I can’t imagine that’s going to be fun for either of us.

There’s a whole host of other considerations too, some of which I’m only just finding out about. Some studies suggest as many as 90% of hysterectomies are unnecessary.

90%!

Limbo it is then, for now.

Interesting vid, made all the more interesting by the specialist’s belief that birth control medication and similar may cause fibroids to GROW, not shrink as we are often led to believe.Understanding Abnormal Uterine Bleeding – via WrongDiagnosis.com

Of course (she says, nonchalantly) conversations that stray within 50ft of ‘women’s health’ are generally considered taboo to one degree or another and those that involve the intimate and bloody nature of such issues are even less appropriate for polite society.

*sigh*

Still, the more my own embarrassment and squeamishness is eroded simply by dealing with the day-to-day ramifications of the condition and the investigations, poking and prodding that come with it, the less inclined I am to help maintain the illusion that women are purely fragrant, delicate flowers and the belief that evidence suggesting otherwise should be hushed up for fear of offending someone’s sensibilities.

I’m not planning on marching on parliament to recognise a minority issue. I don’t have the energy, to be frank, and you can bet the day I did I’d have to cancel so I could stay home, off my head on painkillers and bleeding all over my sofa. Nor will I be creating ‘menstrual art’ (yes, this exists) or top tips for recycling blood (dilute & use to water plants, apparently it does wonders).

But I do want to talk about it, because it’s driving me mad. I can’t believe I’m the only woman out there living with fibroids and pretending that no amount of pain, anaemia, exhaustion and ruined clothing will stop me living a normal life. Life isn’t ‘normal’ round here and it affects my partner almost as much as it affects me. We stagger from one bloody incident to the next, stoically buying yet more bed linen and waiting for the next doubles-you-up-drops-you-to-your-knees-and-wrenches-long-held-back-tears-from-your-anguished-eyes wave of pain to pass.

There are reasons why I haven’t yet opted for the fast fix, a hysterectomy.
There are other reasons why I’m not taking any hormonal medication, such as the pill, or patches.
Despite doctors’ eye-rolling “well you’re not really helping yourself, are you?” attitude, my reasons are sound enough for me to want to stick to them.

Now, I find myself with a good few years to live with this condition before I’ll be happy to go ahead with a drastic operation that could potentially change both my life and me as a person.

In the meantime…WombFury is my venting outlet and information portal on the wonders of living with uterine fibroids.

Stuff will be here soon, promise.