Living with Vulvodynia: Some Practical Advice

Editor's Note: This article is for informational purposes only and does not replace the advice of a trained healthcare professional.

Today's guest post is by Catherine Clavering of Kiss Me Deadly. A trained psychologist, Catherine started Kiss Me Deadly after becoming disabled in 2007 and has been annoying and amusing on the internet ever since (depending on your perspective). She likes stats, shapewear, and arguing. Want to read more by Catherine? Take a look at one of her previous posts - Bra Fit Science: Why Sampling Methods for Lingerie Research Matter.

Alternate Title: "What underwear should I wear if I feel like a 100 tiny cactuses are living in my crotch?"

As some of you may recall, last year I spoke about having some disabilities in the form of chronic illnesses, some of which affect my genitals. So now that we've totally given up on any form of work/life boundary, and you know WAY more about me than I ever thought I'd say, I feel like it's time to talk about lingerie and vulvodynia in a bit more depth. Yes? Yes! Whoo! Let's get technically accurate about crotches! Also, I commit mild cursing at times in this article. Happily, I can justify this on the grounds that research shows this is a good way to reduce pain.

We need to talk terms first, because we live in a world in which most of us don't understand our own anatomy, which makes for a great scene in Orange Is The New Black but a really poor basis for managing our own health, amongst other things.

Most people call the entire female genitalia and nether regions the vagina. Or, more normally, some made-up word (Toot! Frou-frou! Ladybits! Add your favourites in the comments below!).

Anyway, it helps to understand that medically, the vagina is only the inside part, and that the technical term for the outside of your genitals is vulva. There's the clitoris (for fun), urethra (for peeing), the labia (lips - outer and inner), the vestibule (the entrance of the vagina), and then the fourchette, which leads to the perineum and the anus (for poo).

All of this is full of lots of nerves (for sensitivity) and blood vessels. Your vagina is NOT a passive hole; it's an active, responsive organ (as is the clitoris) that can get engorged and expand... or indeed can contract and go into "lockdown" mode. There's also the pelvic floor, which is the muscles that manage your lower internal organs and your control over peeing and pooing. This is normally mostly unconscious, but you can learn to control it.

Anyway, mostly, your standard female anatomy is pretty damn amazing. It's got a delicate balance that it manages to keep in the face of all sorts of drama (digestive issues, cystitis, antibiotics, sex, pregnancy, childbirth, certain sports, swimming in chlorinated water, nylon, stupid health fads, etc).

Vulvas come in all sorts of colours, shapes and sizes, but like people, most don't get represented in mainstream media, so if you don't like yours, maybe get some diverse models into your eyeline before doing anything drastic.

The downside is, at least one in 16 women will experience vulvodynia at some point in their lives. Vulvodynia is persistent, unexplained pain in the vulva. It can happen constantly (often a sort of burning pain) or only when there is pressure on your vulva or vestibule (for example, if you use a tampon or have some sort of genital sex). We don't really know why it happens, but, as usual, stress, infections, trauma or injuries don't help. There are support groups in the UK and the US to help those affected.

Happily, for most, it will be brief and you will recover. The odd one or two of us get stuck managing it for longer, but please be reassured – that's very rare. Rarer still are conditions like mine, lichen sclerosus, an autoimmune skin condition which makes the skin fragile and itchy as hell.

Vulvodynia is NOT sexually transmitted, though it may be mistaken for an STD or yeast infection. If you have a clear screening but still have pain and/or itching, don't let your doctor just drop it. Request to see a specialist.

Happily, in the event that you do have vulvodynia, there are plenty of things you can do that can help (though, again, you should also see a specialist).

Change Your Underwear

The standard advice of vulval pain support groups is to switch to loose fitting cotton underwear.

Why loose fitting? Because if the vulva is feeling overly sensitised, you want to reduce the pressure of fabric rubbing, pushing, and pulling on the skin.

Why cotton? Because it's breathable, so you're not building up heat or sweat. You've probably noticed that most knickers have cotton gussets anyway, and this is because we all know that a synthetic gusset is likely to dispose you to developing yeast infections anyway!

I took this one step further and just gave up wearing underpants for the most part. They're a relatively modern invention, and I have no pressing reason to wear them most of the month. But most women don't feel comfortable with this (plus even I have to put them on so as not to upset my physical therapist sometimes), so here's a more detailed breakdown of suitable knickers fabrics.

Breathable, natural fibres that you can find underwear in:

• Paper – the best pair of underpants I ever had was a shirred cottonwool and paper affair from a medical procedure. Damn, but those things were amazing! I don't think you can get them outside of hospitals, but you can get paper pants for festivals and so on, which can be useful if you need a pair to store in your bag for emergencies.
• Cotton - sold in pretty much every mainstream store, though you might get stuck with plainer styles. Note: you may want to avoid bleached cotton.
• Bamboo – I cannot sing the praises of bamboo enough. It's an amazing fabric, and I find it much nicer than cotton. It's currently rarer, but lots of organic/natural places do it; try searching Etsy for a start.
• Modal – very occasionally I see modal fabric underwear. It's similar to bamboo in how it wears but is, I believe, made from beech!
• Silk – if you want beautiful, sensuous panties in a breathable fabric, go silk. And check for a silk gusset rather than cotton! This will also reduce the thickness of the gusset, which can help if you can't bear to feel a wad of innocuous fabrics roll up when you cross your leg or similar. Try Ayten Gasson for 100% silk styles.

Avoid Like the Plague:

• Cheap sex-shop underwear – they don't expect you to wear it for long so healthy gussets are not a thing! Even posh sex shops can be a nightmare (I'm looking at you, brand that made expensive PVC knickers a couple of years ago!).
• Latex – technically natural but about as breathable as a rain boot.
• Polyester, nylon/polyamide, acrylic – all of these are synthetic but can feel like silk and be described as satin. These are the most common fabrics used, and they will be on the fabric content label. Check for a cotton gusset if you really like them.
• Elastane/Lycra - so-so... it really depends on the content level. 5% elastane in a silk mix helps with fit and durability, but once you get up to the amounts used in pantyhose and tights, well, yuck.

Untested:

• Viscose and Rayon - Rayon in particular used to be common in the 1930s, but I've not seen anything modern in lingerie made with it so I have no idea.

But What About Lingerie Styles?

When it comes to styles, the rule is "the looser the better," as long as they don't have peculiar movements that slice into your groin. Think Victorian open drawers!

Also...

• I would avoid pantygirdles with hooks and eye or poppers at the crotch, because OW.
• I haven't tried ouvert/open crotch styles, but for some, the pain is so intense and widespread, that the pressure of the straps or fabric left would cause problems.
• Worried about visible pantyline? Can't fit voluminous victorian drawers under your cocktail sheath? My favourite pants for this are from Sloggi, who do some very high cotton content, laser cut, lycra imbued seamless shorties; these are the best compromise I have found. Some other brands do similar things, and can be cheaper, but Sloggi quality does last for years.
• I have yet to meet anyone with vulval pain who likes wearing thongs (g-strings)!

Washing Your Scanties (and Indeed Yourself)

Pretty much the rule with vulvodynia is to get very minimalist. Find the plainest, gentlest, and, crucially, non-biological detergent (Editor's Note: I believe we refer to biological detergents as having "enzymes" in the States) you can for washing. The same with fabric softener if you must use it. That means most of the lingerie specialist stuff is out as much of it is fairly heavily scented.

Neither your vulva nor your vagina need soap of any kind. Just clean, plain water. Avoid getting anything soapy near you like the plague. Try not to dribble shampoo on yourself; no shower gels, no soaps, no bubble baths, no deodorants, no deodorant wipes - not even a baby wipe. I really can't emphasize this enough. I hate to sound like an old hippie but really... your poor frightened vulva just needs some alone time to sort itself out. It's pretty good at rebalancing.

Want a relaxing bath with something in it? Porridge oat baths are the new Cleopatra. Aveeno makes colloidal oatmeal bath oil. I can never get hold of it so I just shove some porridge oats into a muslin bag and squeeze. That's just the kind of glamourpuss I am.

Going near chlorinated water? Protect your skin with a barrier cream such as aqueous cream (Editor's Note: I believe Aquaphor is a popular US brand), Vaseline, or Epaderm.

If you're in a country where you can get it, Lidocaine (Lignocaine) 2-5% will numb your skin and give you pain relief. Just try and make sure you get hold of a cream or ointment with no perfumes etc. in it. The most commonly available cream is Vagisil, but that is PACKED with other stuff to make it shiny and scented, and that could make your symptoms worse.

Lets Talk Periods.

Loose underwear with a period is a bad idea. Tampons? Could well be very tricky. Ditto mooncups etc. Basically, it's complication city. There's no easy way out of this I'm afraid. I just find the best cottony towels and the most comfortable period pants that keep them in place, and just get through it, changing them often. However; if you and whoever you might choose to share a bed with can stand it, join the free bleeders – drop the underwear at night, stick a large cotton towel or... two... or three (did I mention that I have a hemophilia disorder too?) underneath you and just live with the extra laundry.

Hair
The lingerie industry is a bit allergic to pubic hair; it never make its way into product shots. It's entirely up to you what you do about how you look, but you might want to avoid aggravating things while the area is more sensitive than usual. Pretty much all hair removal methods involve either ripping it out by the roots, which causes pain and micro abrasions, or harsh chemicals, which we already know are a bad idea at this stage.

Sex
There's a whole essay to be written here, but it's not really the right blog for it and well, I get bored of people thinking lingerie is about sex anyways. So, here's just a few things:

1. Sex isn't just about your genitals. Use your brain... and everything else.
2. When you are in pain, your muscles contract. This also causes pain, which is a really unhelpful feedback loop, but also makes the natural process of arousal challenging to manage. Ask your doctors for biofeedback and sex therapy to help you untangle that mess.
3. It's you that's sexy. Not the lingerie you can't wear anymore. Not the skinny jeans you're avoiding. Not your bubble baths. If you're with someone and they don't figure that out, well, then they don't deserve you.

Have any of you struggled with Vulvodynia? What are some of your tips?