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Intimacy, blood & sex – a unique perspective from a woman with a bleeding disorder

October 13th, 2013 | 1 comment

Today I want to share a topic with you that I think is really important and not talked about enough – what happens when you’re a girl, you have a bleeding disorder, and you want to have sex with a new partner. How do you tell them about your condition? Or deal with the idea of having sex at all?

For anyone, regardless of gender, condition, age or any other factor, telling new people about your inherited and rare medical condition can be downright scary. How are they going to react? Are they going to believe you? I hope they don’t laugh at me. What if they spread rumours? What if they have questions I don’t want to answer or don’t know how to answer? Yep, it can be a difficult task. And sometimes we have to share this information, like with a school, a doctor, an airline, a new friend who needs to know what’s happening to you. Having sex, especially for the first time or for the first time with a new partner, can also be intimidating. For women with a bleeding disorder, there’s an additional level of discomfort – pre-warning your partner that they might get bled on a little bit (or a lot of a bit, depending on what you’ve got going on).

Von Willebrand’s Disease is characterised primarily by bleeds in mucous membranes – the soft tissue around the body like sinuses, your digestive tract, and for women, the uterus and vagina. Menstrual bleeding for women (as I mentioned here when talking about my own issues) can be heavy, long, painful and a lot of other not nice things. Also, like other bleeding issues, it can be due to use or injury, not unlike a severe haemophiliac getting a joint bleed from doing a hike up a mountain, for example. Aside from menstruation, the other reason we use our reproductive organs is for reproduction (or attempts at it!). Yes, being a woman with a bleeding disorder (especially VWD) means I am at risk of bleeding on my partner during or after sex.

What a conversation to have to have with someone! If you’re young, or just not fully comfortable with your sexuality, owning that fact (on top of dealing with the genetic condition) is a bit of a scary thing. You might not want to say anything and hope there is no issue. You might not want to date someone or think about having sex because its too embarrassing to talk about. You might think no one would want to have sex with you because you’re different and difficult and gross stuff happens, and why would they when there’s other options that don’t involve bleeding. Or that no one would want to be a parent with you because you’re passing on this horrible thing to your kids.

If you’re not fully comfortable with your condition or your body, the thought of bleeding on someone during sex feels pretty shameful (I have these moments occasionally, I’m not immune!). But it shouldn’t – sex should first and foremost be an enjoyable experience. If it feels scary, confusing, or shameful for you, firstly I understand. You’re not the only one who has these thoughts, so please don’t feel alone in your struggles. But it really shouldn’t. Here are some things I’ve learned and done over the years to deal with this awkward part of what should be an enjoyable activity (whether for procreation or not!)

1.Keep up with your treatment/bag of tricks for treating your VWD/bleeding disorder.
This is really important. Whatever you’ve been prescribed for stopping menstrual or other bleeds, whether its a contraceptive or factor or something else entirely – keep it up. It will be assisting with keeping your factor levels up, which in turn will lower your bleeding risk. And if your regular treatment isn’t working well enough that you feel uncomfortable even approaching the idea of sex, please go back to your doctors. You should have enough blood free days each month/other cycle pattern that you don’t feel discouraged from using your body in a way it is designed for. If you feel uncomfortable talking to your regular GP or haemotologist about this, perhaps there’s a nurse at your local Haemophilia Treatment Centre who you can chat to? Or another doctor who can help you deal with your bleeds? The other really important factor is to keep your hydration levels up. If you have VWD (especially) this will have the benefit of keeping all your mucous membranes hydrated, preventing any kind of bleed, but most importantly it plays a role in menstrual type bleeds. It also means you’ll be generally moist, preventing any ‘usage’ bleeding or abrasion during sex, which can be common especially with condom use.

2. Relax!
Because stress and tension makes it harder for you to get aroused and stay relaxed down there, increasing your chances of drying out and bleeding. Plus its more fun when you’re relaxed.

3. Learn to accept your medical quirks and the unique nature of your body
I KNOW. This is so much harder than just typing that simple sentence. As you may have read elsewhere, I was diagnosed when I was sixteen, and now, almost 12 years later, I’m just getting to this point. Yes, I bleed a bit during sex, almost every time. And all the other stuff I mentioned there happens too. But I would have much less to say here and probably wouldn’t have had the impetus and drive to write without my condition. Or had the fuel to want to take care of myself this year after the Challenge like I do. I wouldn’t love Barre as much, be growing my own food or have made some amazing health related discoveries this year without it. Finding an exercise or activity (outside or inside the bedroom, whichever takes your fancy!) that makes you feel strong and capable is a big part of it for me – previously I’ve felt weak and useless because of my tendency to injure, bruise and bleed with ease but now I know I am strong. Knowing my body does lots of amazing things makes it easier to deal with the aspects that aren’t quite as wonderful. Like bleeding after sex. Meditation helps me connect with my physical self, too.

4. Find sexual partner/s that you trust
This was a big thing for me – not feeling like I could trust anyone with this information. No matter your orientation or any lifestyle choice, feeling comfortable sharing this information with the person you’re having sex with will make for a less awkward end to your evening. And of course, putting yourself in a situation where you might not feel comfortable (in a bad way, of course – do whatever Fifty Shades kinds of things turns you on!) will only stress you out and make it more likely you’ll bleed. I mentioned that stress will dry you out, and it also contracts your muscles – not just in your pubic region, think of any kind of adrenaline response in the body. The other thing that applies to me is I know stress plays a part in worsening bleeding symptoms – I’ve certainly noticed this in relation to nose bleeds. Maybe this happens for you too? Plus stressed uncomfortable sex misses the point as far as I’m concerned (bleeding disorder or not) – it should be fun (yep, I’ve mentioned that a few times now)!

I think the most important thing if you’re like me (a female with a bleeding disorder) is to do what you feel comfortable with – have sex, use a condom, don’t use a condom, abstain or take care of things for yourself. I feel lucky that I know the weird thing lurking in my genetic code, so I take it within my power to do the best I can to take care of myself, and that includes my emotional and sexual health. If you have experience with this issue (and are feeling brave enough to talk about it on the internet!) I’d love to hear from you below.

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