I had something of an Outing event this week, letting some friends and extended family know what’s going on with me because, frankly, I’m letting strangers on the web know about it and I didn’t want this to seem like I had somehow shirked them in the information stakes.
At first I felt slightly daft and had to question my own attention seeking motives but then a funny thing happened. It wasn’t quite up to the #metoo movement, but along with the standard response of ooh, how shit, sorry you’re poorly response a lot of people also said that they, or someone close to them, was also a sufferer. I don’t mean in exactly the same boat as me, I don’t even know what boat I’m in as yet, but plenty of ladies dealing with endo, adeno or fibroids. WTF is going on, am I in some weird bubble of menstrually cursed women?
I decided to google some stats and it turns out that no, I’m really not. Here’s what I learned over a saturday coffee browse:
- Fibroids: By the age of 50, 70-80 % of women will have uterine fibroids. A high number of these women will not be symptomatic and it is estrogen sensitive.
- Endometriosis: 10% of women are thought to have endometriosis and it is found in 30-50% of women with fertility issues. It is estrogen sensitive.
- Adenomyosis- there seems to be the most reluctance to put a figure on the occurrence of adeno but I’ve seen guesstimates from 20-30% of women experiencing this with about a 50% crossover of these women having endo too. Yes, it is estrogen sensitive.
None of those numbers are insignificant, so surely we know a lot about these issues, right?
- Fibroids- Controlled by hormone therapy, pain relief and occasionally excision. No one knows what causes them.
- Endometriosis- Controlled by hormone therapy, pain relief, excision or ablation (burning off) but that is of course if you can get a definite diagnosis, which often takes years. No one knows what causes it.
- Adenomyosis- Controlled by hormone therapy, pain relief or hysterectomy. No one knows what causes it.
Are we seeing the pattern here? In an age when we can grow human ears on the back of a mouse why the hell is a painful, chronic problem that effects so many women left in the breeze like this? Where is the research?? Where are the specialists? Why is it considered enough to say oh, here, take a birth control pill and go away?!?!?
I can’t help but wonder if the same attitude would be seen if this happened in men. Just think about fibroids: if a man went to see a Dr complaining of frequent testicle pain which coincided with blood loss and prominent physical lumps, would that man be sent away with a pack of microgynon and a hot water bottle? Worse still, would they be told that said lumps weren’t big enough to be ‘a problem’ and that the symptoms were all in their head? They absolutely would not. I don’t want to get into slamming men for not being able to handle pain or make manflu jokes but seriously, if you could see these diseases on a pair of balls in up to 70 percent of under 50’s there would be outcry. A world health crisis. It would be fixed by now. Still not convinced? Another common symptom of the unholy trinity of diseases above is pain or loss of sensation during intercourse. Sexual dysfunction. Well that’s easy enough for the girls isn’t it, just don’t have sex very much? Fine. Now, look at the availability of viagra and tell me that there isn’t a difference in gender treatment.
Maybe it is latent, institutionalised sexism, maybe not but there is a problem in how the symptoms are prioritised. Maybe it is because we can’t wear our uterus externally, and maybe it is time to do exactly this- metaphorically speaking of course.
I was a bit shocked at how many women I know have serious uterine issues, and mildly saddened by not knowing this before. Why don’t we talk about it? If we don’t feel comfortable telling our nearest and dearest gal pals about it how can we hope to convince medical strangers to take the conditions seriously? And not just our gal pals, we should be able to talk to the boys too. I got a mild telling off from my older brother recently for having kept all of this to myself for so long, and my only defence to this was that I genuinely didn’t know what to say. Which is ridiculous! Who would struggle to tell their brothers/father/partner/boss that they had appendicitis? Or flu? Ever felt embarrassed to admit to food poisoning or a broken leg? No. So why can’t we say hey I’ve got a defective womb and it’s making me feel terrible. Why does this admission feel like you’ve just whipped your fanny out for everyone to look at??
I for one am going to stop shuffling over it. I’m going to stop being embarrassed, because this isn’t my fault, and it isn’t unusual. A few weeks ago I had an unfortunate bloat on, common to many endo and adeno sufferers. I couldn’t get into my jeans and went to a birthday do in my comfiest leggins and a loose fitting dress. I felt self conscious to begin with- because I was physically uncomfortable and hello, not exactly glammed up what with the leggins. We had been there maybe fifteen minutes before a close friend’s mother came up to us, laid her hand on my sore fat belly and told us off for not letting her know about ‘our news’.
Absolutely. Fucking. Mortifying.
Do you know what I did? I smacked her hand off me and told her to fuck off with such an insensitive assumption and also suggested she didn’t go around randomly touching people without asking.
Of course I didn’t do that. I laughed, and I told her that my distended guts were full of cake, not baby. I tried to stop her from feeling embarrassed. She apologised and changed the subject and I spent the next hour trying not to cry and suck my gut in at the same time.
This isn’t the first time this has happened, I have another outfit from the summer I will never wear again after a stranger asked about my due date in order to avoid an awkward silence whilst waiting to pick up my nieces from school. Ha!
If this happens again, I’m not going to apologise for being fat. I’m not going to smack them and tell them to fuck off either. I am going to say actually I’ve got adenomyosis and it makes me bloat out and look pregnant sometimes (and also please don’t touch me like that). Maybe they will learn something. Maybe I will learn to feel more comfortable and less dirty about it. Maybe it will open up a conversation and give me and/or that person more confidence to be open about having womb problems, or period problems or any kind of embarrassing bodily malfunction.
Because we should be able to talk about these things, because they are not unusual. We shouldn’t feel a need to mumble through our symptoms to a doctor because if you don’t speak up, you wont get help. Sometimes even when you do speak up you will have to fight and fuss and create to get some help, and that is not acceptable.
If you have an endo/fibroid/adeno diagnosis or think you have symptoms of one of them, tell someone. Start out by telling a friend, telling your mum or telling some random strangers on twitter. For goodness sakes tell your GP. Tell the people you work with. Tell your kids if you managed to make some. Fucking sky write it for your neighbours, because it is not your fault and most of all, it is not unusual.