LET'S TALK: VAGINAS (Pt. 2)

 

Hello, everyone. Thanks for tuning in for ‘Part Two’ of my ‘Let’s Talk’ series on our good friend, the vagina. I’ve been delaying this post for a bit because I originally wanted to include a section with some awesome tips and goodies that will help make yours or your partner’s or your daughter’s, mother’s – anyone’s vagina free from discomfort without compromising on style. I know I wrote that like the script a woman with lipstick on her teeth might use to sell stretchy underwear on TV at five in the morning but I’m feeling irreverent so you’ll just have to bear with me.

I was going to do that, include a goodies section that is, until I realised two things. One, I have enough tips and products to warrant a separate post all on their own. And two, the whimsy I’d like to associate with those happy things is not so much dulled as it is virtually silenced when asked to perform alongside descriptions of chronic vulvar pain and its many treatments. Go figure.

So, that post will follow soon and I hope it will be useful to all women or all the women in your life, and not just those suffering from vulvodynia or pelvic issues. In the mean time I would like to talk about my experience with this complex women’s issue that is equal parts pain, frustration, and exhaustion.

VULVO-WHAT, NOW?

Let’s begin with a definition for ‘vulvodynia’. The National Vulvodynia Association in the U.S., who inexplicably charges women upwards of forty-five dollars to gain access to arguably necessary information (Me, a grudge? Never!), gives the following as its definition: ‘chronic vulvar pain without an identifiable cause’. They didn’t make it sound altogether too fancy so I can’t make an ‘and in normal person words’ joke, which I think is fair play. It really is in some sense ‘just’ chronic vulvar pain without an obvious cause. Unfortunately for a lot more women than you might at first think, this simple diagnosis comes with a lot other crap. Years of it. Believe me, we have oodles of it to give out should anyone ever be short on any crap.

Before I time travel to the beginning of this affliction and find myself once again a skinny seventeen-year-old in the grip of teenage angst, it might be useful to list some of the symptoms I’ve experienced through vulvodynia. I’m doing this because it makes more narrative sense to give them as a block than as they really came - in dribs and drabs over the last eight years. That way I don’t have to struggle to find exact dates and when I mention a new symptom or treatment you can say ‘ah’ over ‘huh?’ ‘A’ is more elegant vowel, anyway. It’s important to note that vulvodynia is a chronic condition that still has a lot of mystery around it. People don’t know the extent of its symptoms or its cause, so some of these symptoms might not be related directly to vulvodynia. The varied nature of its effects are seen in its many treatment paths, and easing symptoms normally means seeing a range of different specialists. It might then be best to call this a list of my symptoms experienced since my chronic pain began, rather than a list of symptoms pertaining only to vulvodynia. These might be related or not, we just don’t know. I stand to be corrected. Without further ado, my symptoms from the time I was seventeen until now have been/are: a burning, raw sensation in the vulvar (say this word out loud with flare for some comedic relief) area, difficulty peeing, inability to wear pants with seams, painful sex, painful tampon insertion, painful anything insertion, really, inability to wash genital area with soap or to make contact with soapy water in this area, an intolerance towards all underwear materials other than cotton, associating sex with pain, strong UTI-like symptoms after sex, contact with soap, contact with seams and other ‘risk’ behaviours, increased frequency and urgency to pee, urine leakage, bladder spasms, vulvar sensitivity resulting in the least amount of time possible in underwear, sensitivity to alcohol, dryness, and the habit of shopping too much online. Just kidding, the last one is on me. Me, Moonshadow Vegan Deli, Superbalist, and Faithful to Nature. You guys need to stop with the quality goods and service. One last point. There are many moments , treatments, and tests that I've left out in my retelling. This post is already long without detailing my entire journey. If you're looking to fill in the gaps for yourself or someone you care about, please send me an email and I'll be happy to answer any questions you have. 

THE GP

Okay, so, that done, let’s start at the beginning. I began experiencing vulvar pain when I was seventeen. It didn’t coincide with the start of any sexual activity, but it did manifest itself in what I and everyone else thought were bladder infections. ‘Oh, Al and her UTIs. All you need to do is stop being so promiscuous you hot-to-trot Sally!’ This was frustrating because nothing about my behaviour or habits – sexual or not – was causing the incredibly painful, burning, raw feeling in my underwear. And so no behavioural changes would ever actually help me in the way I or my wisened critics ever thought they might. It was also annoying because I suspected these ‘diagnoses’ were another way to police my body and my behaviour, because ‘respectable girls don’t get sick down there’. Screw that, honestly. If you sleep with a hundred people or one or none, your sexual activity or inactivity is neither a cause of vulvar pain nor a marker of self-respect. Stop making yourself and/or others feel bad for having or not having sex. We have way bigger problems.

Well, as I was saying, I was being treated for bladder infections a few times a month, taking antibiotics and then citrus soda when those didn’t work – which they never did. Over the years this trend continued and made sex, wearing pants, and going to lectures difficult. When I moved to Cape Town I found a wonderful GP who would treat my ‘UTIs’ with a bit of wonder – always a troubling character trait when present in a doctor’s visit, curiosity. My GP’s curiosity was piqued because these ‘infections’ were frequent (only stopping the week of my period), and because all my tests for bladder infections came out negative. I didn’t have a bladder infection, so why was I so sore? And why was it getting worse?

Eventually my doctor put me on bladder spasm medication called ‘Urispas’, which worked like a charm for a few months and then rapidly stopped taking much effect after that. I was still buying them and over-medicating for the little help they gave in times when I’d want to go watch a movie, so that I wasn’t getting up and disturbing people every five minutes. The pharmacist I bought them from recognised me after a few visits and asked why I was using them so often. I explained my pain to him and that kind soul whose name I don’t know gave me the number of his wife’s urologist.

THE UROLOGIST

It took me a long time to call the urologist. By now I was just convinced I was broken or dirty and that the doctors couldn’t help me. This self-destructive thinking was fueled through the slow explanations of the many GPs I had seen about this problem who had said that women were just built ‘badly’; we are prone to infections because our ass is too close to our vaginas and things get mixed up and oh, aren’t women just the darndest little things? This made me wash myself more and more rigorously with harsh soaps that just made everything one hundred thousand times worse.

It was only after I had a bad attack at home visiting my parents that I thought ‘enough is enough’ and I called the urologist. I didn’t have much to lose. After explaining my symptoms to him he promptly began saying that bladder infections (as I thought my pain still was) are prone to happen to (over) sexually active women. I hadn’t had sex in months when he said that so I felt pretty smug as I was moved into another room where the urologist checked me for cancer. Thankfully everything looked fine.

The urologist then suggested that perhaps my urethra might be restricted, and we penciled in a time for a dilation. This is a procedure done in a hospital where your urologist carefully stretched your urethra using fancy dilating tools. By this time I was twenty-three, and living with chronic pain for six years. I had come to think of pain as a normal state of being, with the worst pain associated with sex (how’s that for your psyche?) and wearing pants or shorts or anything with a heavy seam over my vagina. I wasn’t prepared for the procedure. I thought it would be done in the urologist’s office under some local anesthetic, so I was a little lonely in the hospital while G and my family were out of town or living far away. Hot tip: if you’re scheduled for a procedure, make sure you know exactly what it will involve, even if that means what you think of as wasting your doctor’s time. That way you know what’s coming, and can schedule  a date where your loved ones aren’t at least the better part of a thousand kilometers away. Thankfully a kind friend drove me home and she saved the whole day from becoming a dark joke.

Post the hospital visit my bladder spasms became much worse. The thing I’ve come to associate it with is when you get sand in your eye. The first few seconds where your eye fights to stay closed but also blinks open furiously to get rid of the grains and your pain becomes this strange sensory experience of both heightened and dulled sounds, and darkness and colour? Not sure if you’re with me on that, but it’s a similar experience only, you know, in your vagina. That wasn’t great, but things eased up and it was also a lot easier to pee. When other things didn’t improve after that my urologist scheduled a second dilation. Still no real improvement. I had a meeting with my urologist and we had a frank discussion about my symptoms.

It’s important to be open to talking about your symptoms, even if they might be embarrassing. It’s also very important that you sit with yourself and try your best to rehearse articulating your pain and discomfort. What exactly goes on? How does it feel? Can you compare it to something else? Not knowing the answer to these can cost you a lot of time, money, and further pain. I learnt that the hard way. After pausing when I spoke about my urinary leakage issues, the urologist told me it might be time to speak to a pelvic floor specialist. I had a self-defeatist moment were I realised it’s necessary to stress your symptoms and not just include them under a big umbrella of seemingly-related conditions. You don’t want to be two operations down and end up with a ‘I guess I should have mentioned this before…’

Obviously the urologist’s news had me super disheartened – by this stage I was used to being passed around to different doctors, and I knew what this move meant. You can’t fix me, but you think maybe someone else can.

THE PELVIC FLOOR SPECIALIST

I got over myself and called the pelvic floor specialist. She was a kooky and lovely woman who explained that sometimes pelvic floor dysfunction (PFD) could lead to the tightening and relaxing of parts of your body that shouldn’t be so tight or relaxed. I was skeptical that PFD could cause a raw feeling in my vulva, but I was willing to try anything. We set up a meeting and over about four or five sessions we did some sessions of internal and external myofascial release. Mostly this meant that the therapist had her finger in my vaginal cavity and pressed down in various places while asking me to squeeze and release. The sessions did help me to pee a lot better. I had an actual stream without having to force anything, which was no small victory. I also learnt that my stress was taking a massive toll on my body, and that bad breathing habits were adding substantial pressure to my already sizable anxiety. It was around this time that I read about the benefits of yoga for PFD, and stress. I soon started hot yoga (bikram, vinyasa, and ashtanga) and it had incredible results for my stress. The benefits of yoga have been immediate and also long-term, and although it did little to help with any burning sensations and on, looking back I’m certain I wouldn’t have made it so far so smoothly without it.

FINALLY, THE GYNE

When I didn’t see major improvements I stopped going to the pelvic floor specialist and started doing my own research in more earnest. It was around this time I started seeing the word ‘vulvodynia’ everywhere. I asked the specialist about it over the phone and she said that it is a symptom rather than a cause of pain. Looking back, I think I know what she was getting at. There are some sufferers, and specialists who think that vulvodynia is a symptom of a larger, structural problem in the pelvic floor. She didn’t make this very obvious to me though, and even if I had stayed with her for longer, I wouldn’t have encountered the options available to ease my pressing vulvar pain.

In other words, while the cough might only be a symptom of the cold, there are certainly things we can try to get rid of the cough in the meantime, before we cure the cold. The pelvic floor specialist out, I brought a gynecologist in and went for my first ever check-up. I know, I know. I know. I get it, I know. It’s irresponsible to wait so long to see a gynecologist, especially if you're having vaginal pain. If you’re over the age of thirteen and you haven’t been to the gyne in a while or ever, make a trip soon. Your vagina and you have been through a lot together, treat her right. Gynecologists are pretty chill about it and you won’t be judged for your absence, but you will be tested for a bunch of things so go. If you want some more info about gynecologists and how they can help you, you can take a look at this super helpful link.

A BETTER GYNE

As I was saying, I went to see the gynecologist, and she told me more about vulvodynia when I asked, and made sure that all was fine down below (it was), but ultimately gave me no new information. I struggled with my problems, did my yoga, and did my research. I started reading papers by a local obgyn on the treatment of vulvodynia. What he had to say made me tearful. It was an incredible feeling to finally have someone understand what I was going through and would trust what I had to say about my own body. I made an appointment and was so excited when I was finally given a proper diagnosis after an ear bud test. In this test I was asked to rate my pain sensation from one to ten as my fabulous new doctor poked around my vagina. There was a moment when he used the bud to press on my vestibule, and asked me to rate the pain. I said, 'I don't know, how sore is it supposed to be normally?', and he replied, 'Nothing here is supposed to be sore'. I could have cried. 

 I came out from that meeting knowing I had a common form of vulvodynia called ‘vulvar vestibulitis syndrome’. This was last year, 2015, seven years after my first pain arrived.

I was sent away with pain sheets to fill out, a prescription for a topical numbing cream, and another appointment in a few weeks. Now that I had my diagnosis, it was a trial-by-error battle to see if we can find a suitable treatment. When I returned we discussed going on nervous system depressants to ease my body’s inflammatory response, and I was eventually put on 30mg of Cymgen, and 60mg of Trepiline. These took a massive knock to my energy levels. Whereas before I could finish an hour-long bikram class with loads of energy to spare, now I had to lie down for at least a few minutes in every class. Some days it was even a struggle to stand up and cook supper.

All of this and I wasn’t seeing all that much improvement, though the doctor did explain it would take a while. We then tried a potassium test to see if my body could help itself after responding to an induced pain flare-up. Online I’ve read that this is done to test if the patient will respond well to cystitis medication, but that wasn’t my doctor’s aim for some reason. Either way it was a fruitless exercise that just meant a UTI-like pain lasting weeks. This did have one benefit though; because we induced such heavy pain it was possible for me to see how far I had come iteratively. The pain I experienced after the potassium test was terrible and it was pain I remembered from a long time before, maybe around the time I first went to see the urologist. So little steps were being made! Yay!

We then tried Visanne to stop my period as my pain seemed to heighten just before it and (unusually) disappear once it arrived. This just made me incredibly moody so I ditched them a few months later. They weren’t helping anyway. It was around then that I got serious. The time for drastic measures had arrived. I was still unable to have pain-free sex, and I hadn’t worn skinny jeans in many months. I was so done with dresses. I still am, but more on that later. This in mind I spoke to my gynecologist about a procedure he had mentioned as a possibility in one of our earlier sessions – a vestibulectomy. This vestibulectomy would be done in the hospital, and I would have the worst of my pain areas surgically removed; in my case that meant a horse-shoe shaped area taken from the 'back and under' of my genitals. Other skin around my vagina would be used to cover the exposed areas, like a pullover sweater.

My gynecologist agreed to the procedure on the condition that I manage my expectations. This surgery might do much or not much, and it might have a big or no effect on my ‘inside’ pain. I was by then using the words ‘inside’ and ‘outside’ to distinguish between pain I experienced as a sharp sting accompanied by urinary leakage (inside), and the pain I felt as raw feeling on my vulva (outside). The surgery might have knock-on effects that soothe my 'inside' trauma, but it also might not, and my doctor wanted me to know this. It’s also useful to note that this surgery might have happened at a much later stage for some women as not everyone can afford to take risks like this so soon. I could, so I insisted.

My surgery was then scheduled and I was given a strong topical cream that was made up for me specially, to use before and after then. We also spoke about making time to talk about vaginal wands and how one might be used to treat my ‘inside’ pain at home. All would be revealed at the appointment after my surgery. I started this blog post in the days leading up to my hospital stay. I was very nervous and frustrated and confused. I had been given some but not many care instructions by my doctor, and what he told me about my recovery time of one to three weeks was contradicted by other saying at least six. You have to keep in mind, by this time I was used to doing my own research and not taking what doctors said to me as gospel. I was also irked by the vast privilege that must divide me and other sufferers. It took me three GPs, five specialists, two costly operations, and months of yoga classes before even getting a diagnosis. This is not a luxury many people in this country can afford. This might go to show why, out of 280 million women who are projected to have vulvodynia, only half seek treatment. 

Lying on my bed in the hospital, waiting to go under, I was reminded of a story told to me by my partner’s doctor friend earlier that week. He was retelling some of his experiences of working in the emergency room of a public hospital and while I’m not going to give the details, suffice it to say that a vestibulectomy is the very least of anyone’s problems there. I was under debilitating pain for many years and shitty as that is, and as shitty as surgery is, I’m definitely lucky to be where I am.

It’s now been five days since the surgery. Improper care instructions and my apparent enthusiasm for work meant that my healing has been set back after I got an infection on Monday. I’m now doing a little better and I’m taking much smaller steps, literally, to help ease stress on the stitches. I have some pretty sharp pain in the affected area, and it will be a while before I can do yoga again, but I’m excited to see what happens next. I have my next appointment with my gynecologist on Friday and that’s where I’m sure we’ll do a thorough debriefing and we’ll get to chat about vaginal wands, as one does. Before the operation I had also read more about issues that might come from problems with the pudendal nerve - what I think my pelvic floor specialist was initially on about. This research was prompted after my yoga teacher noticed that my hips were misaligned. I now know that there are some women who say that their vulvodynia was healed by physiotherapy aimed at correcting misalignment. So, yeah. I can’t stress how important it is to do your own research. Hopefully this surgery solved a lot of my problems, but if not and I have to start with a new doctor and new therapy, at least I gave it a try. For the near future I’ll still be on Trepiline and I’ll still be wearing dresses instead of my beloved skinny jeans, at least until I’m fully healed. I’ll keep you updated.

I hope this blog post has been informative to everyone, and helpful to others currently fighting with chronic vaginal pain. There isn’t a lot out there and what little is there is hosted on ugly html-style forums dated from 2012. Your vagina deserves better. Please feel free to email me any questions at alezodendaal@gmail.com, and never take mine as the last word on vaginal health. It’s important to do your own research, but my voice should be one of many you read, and you should discuss all your options with a health practitioner who knows their vaginas. I’m keeping things a little lighter in the next ‘Let’s Talk’ post with some tips and products to keep the vaginas in your life happy, whether they have vulvodynia or not. I’m planning a lot of cool things for this space and I’m delighted with the sponsors that have already come on board.

Until then,

A

xoxox

 

UPDATE

Hello, gang. It's now been twelve days since my surgery and I thought I'd check in. I went to my gynecologist yesterday, after a somewhat frantic email led to him  giving me an equally frantic call to ask what's going on and when am I coming in.

I had been having increased discomfort and UTI-like symptoms that really got me down before I contacted the gyne's office. G was trying to keep my spirits up from Barcelona,  which wasn't easy, I'm sure. Especially since I was just in the mood to feel very sorry for myself, and thought the UTI symptoms meant that the surgery had failed.  It turns out that it's too early to see the effects of the surgery, and that I was just being a drama lama.  Thank goodness for that.

So, the appointment started with my gyne asking me to describe my pain and how debilitating it was. Now, I can handle cuts and bruises and broken bones. I've been called a 'tough cookie' by everyone from my tattoo artist to my doctors. But one thing I can't stand without a great deal of effort is discomfort. After I woke up from surgery I  asked the nurses to please call the doctor as soon as they could so the uncomfortable catheter could be removed STAT. On the other hand,  as soon as it was out I went to the loo to take my first 'painful' piss, and thought it a good opportunity to remove the needle from my hand myself at the same time. I then asked G through the door to get our stuff ready so that we could get going the minute I got out. I didn't want to lie in bed over night, just being in a state of irritation.

Pain is okay - discomfort is a whole other story.  That in mind, when my doctor asked me how debilitating my pain was, I answered that the pain was manageable to the point where I was having to remind myself to take much smaller steps, but that the UTI symptoms were causing me discomfort. He then told me he's not surprised those symptoms are making their appearance as it's a sensitive body part  that's seen a lot of rough attention of late, and that I shouldn't worry. Result!

He then showed me my histology report based on the tissue they removed during the surgery, which by looks of photos of said tissue, was a lot more than I was expecting. The report said that they had noticed that there were lots of white blood cells in the tissue, denoting that indeed there was an inflammatory response in the nerves of that area. This was consistent with my diagnosis, and I was then really happy with that. There was also a white and red image of my nerve cells,  and my doctor pointed out one really long, thick red nerve that stood out from the others. Because this little guy was so 'inflamed', for lack of a better word, this also confirmed that my body was used to creating an inflammatory response in that area; I most certainly, definitely have vulvodynia. He hoped that this surgery was successful in removing the nerves that had become so inflammatory, and mentioned that there were some lifestyle changes to make to ensure that this space stayed inflammatory-free. More on this a bit later.

He then examined me to see how everything was healing, and saw that all was good under the hood (vagina puns are fun).  After this I was shown the area with a hand mirror and I saw my vagina full-frontal for the first time ever. I know I'm a complete butthole for leaving that so late, but I've just never been interested. Squishy organs, blood - for me it serves as an uncomfortable reminder of intense fragility. But I'm so glad I did it for a few reasons. The best of which was that I now knew how deep inside my stitches were, and I knew then I could have a lot more mobility and be a little less wary of my parts during recovery. 

I've been given the go-ahead to walk around and leave the house (!), but it will still take two weeks before I can do yoga again.  In his words, 'let your discomfort be your guide' - a statement he denies as being a Pinocchio reference, but I have my doubts. I have another check up in two weeks where we'll discuss moving forward with vaginal wands (accio myofascial release!), and lifestyle changes. Until then, darlings. 

xo

UPDATE PART TWO

So, it's almost been six weeks since the operation, and I have a confession to make. You know how I wrote that I'm relaxed about the outcomes of this and that I'll be happy-go-lucky even if things didn't improve? Well, I lied. I had a lot riding on this operation. I thought by now I would be feeling loads better and happily living on More Or Less Okay Vagina Street. But I'm not. I discovered this because I wore pants on two separate occasions over the last few weeks, and for every few minutes their seams wrestled with my vaginal folds (that's your cue to laugh), I spent another hour in pain, reaching for my numbing cream and anti-inflammatories. 

For a while I've been pretty bummed about this. It's been a long journey and it's hard not to let setbacks get to you, and get to me they did. But I have my next appointment later this week. It will be the first one since the stitches have (presumably) dissolved, and the first at which we'll start discussing rehab. I'll fill you guys in after that. In the mean time I've been doing some reading on bio-kinetics and physical therapy for nerve abnormalities and misalignment. 

So in summary - disheartened, but not giving up. I hope if you're reading this in the same boat that you don't give up either. 

xo