Vestibulodynia? I’d Never Heard of it Either

If you don’t know how to pronounce Vestibulodynia, let alone have any idea what it is, don’t worry – for a long time, I didn’t either.

You may have heard of another term – Vulvodynia – though you’re probably not sure what that means either. This is the term given to generalised, unidentified pain in the vulva. Women are often diagnosed with Vulvodynia when their doctor is unsure of why they are in pain.

There are also scenarios – which I have personally experienced – where doctors don’t offer any diagnosis at all, and instead see pain in the vulva as something psychological.

When this happened to me, I was told to go and see a Psychosexual Counsellor to deal with the pain I experienced during sex. But I was so confused – if I’m physically in pain, how is this going to help me? I did my best to go to my appointment with an open mind, as no other doctor could seem to give me any further insight.

It was suggested that I had Vaginismus – a condition that causes the vaginal muscles to tighten involuntarily during penetration, or even when inserting a tampon. The idea behind attending counselling to deal with vaginismus was that I could talk about any mental worries to do with sex, practice mindfulness, and hopefully then feel more relaxed so my ‘involuntary tightness’ would fade away.

I remained convinced, however, that my pain was very much physical and I felt sure that I just hadn’t found the correct diagnosis yet. I was trying to be as open minded as possible, in the hope that I could ‘talk’ my way out of the last 8 years of pain, but after 10 Psychosexual Counselling sessions I decided that it wasn’t for me.

My counsellor was a wonderful and empathetic man, but I really couldn’t shift my belief that I did not, in fact, have some deep-rooted traumatic issue that I related to sex. My search for help continued.

Endometriosis, irritable bowel syndrome (IBS), severe period pain, internal cysts – I was scanned and tested for so many things. It was a long, arduous, frustrating process with which I know many other women can identify. I’ve spoken to women who felt they were being ‘passed around the system’, as well as others who felt as though they’d been completely given up on.

I’d done a huge amount of research on my own about what I was experiencing, but after a while I realised that I hadn’t actually researched individual professionals working in the field of vulval pain.

I finally booked an appointment with a well-researched specialist, who confirmed within 15 minutes of talking to me that I had Vestibulodynia – a condition that causes severe pain around the vestibule, the entrance of the vagina. This pain can occur from vaginal entry such as intercourse or using a tampon – which is how I was affected, but some women experience pain purely from pressure around the area, such as from wearing tight fitting clothes, or riding a bike. My heart truly goes out to any woman experiencing this.  

The symptoms and the level of pain vary greatly amongst sufferers, and as there seem to be so many varieties, I can understand why it can be hard for medical professionals to diagnose the condition. There’s a difference between provoked and unprovoked Vestibulodynia, for example, which means that the pain can occur with or without touch. Some women physically tear during sex, while others have red irritated skin.

The experience that all women suffering from the condition seem to share is the burning sensation, likened to being cut with a razor or having acid poured on the skin. I am amazed, and horrified, that so many women have to experience this level and intensity of pain and yet the rate of diagnosis remains so low. Many gynaecologists are still completely unfamiliar with the term.

Since my diagnosis, I have had surgery to try to improve my condition. After countless other treatments, I decided this was the best option for me, but most women aren’t even given surgery as an option. Most women have to deal with this condition – and countless other vulval disorders – with such a complete lack of support, for so many years, before coming anywhere close to a diagnosis.

Why, as women, are we so ill-informed about this element of our health? Why is our pain so often dismissed and de-validated? Why is the silence surrounding women’s bodies and sexual health still so stifling? 

Personally, I found reading blogs from other sufferers incredibly important. Reading other people’s words gave me an insight into their pain and ideas of things I could try for myself. Most importantly, reading blogs made me feel – for the first time – that I really wasn’t alone.

Unfortunately, there’s no guarantee that one person’s experience will be exactly the same as the next’s, so there’s no assurance that you will find all of your answers in another woman’s blog post. But from my own experience, what you will find is a community and support network that is doing its very best to provide the answers that the medical professionals can’t or won’t. 

To anyone who is suffering and to anyone who is currently in pain: keep strong, keep searching – your answer will be out there. And in the meantime, I promise you that support from other women experiencing a similar thing is far more comforting than going it alone.

The Vulnerabilities of Being Pregnant

Women face unique challenges throughout their lives. For some, one such challenge can be pregnancy. It is an exciting and beautiful time, but it can also be a major test on the strength of a woman’s body and mind.

Did you know a woman’s socioeconomic status has a surprising amount of influence, not just on her baby, but also on how her pregnancy goes? Childbirth outcomes are heavily tied to socioeconomics, with women in more impoverished regions experiencing a wide range of additional challenges.

While some of these challenges are health-related, others are not. Many factors combine for a successful pregnancy and birth, and an individual’s financial situation has a huge impact. Of course, most people can’t just change their financial standing quickly, and so we need to examine ways we can change the culture around pregnancy.

In countries that lack universal health care, financial status has a significant impact on prenatal outcomes. Merely being able to afford regular medical checkups, prenatal vitamins and any additional medications can significantly increase the chances of a healthy pregnancy and baby. It’s impossible to understate how important prenatal care is.

Access to medical care goes beyond prenatal care, though. Women in lower socioeconomic classes tend to be less likely to be able to access health care before becoming pregnant, which also contributes to the health outcomes of the child. Even with socialized health care, the risks remain, because money affects every aspect of our lives.

Women can also suffer in countries without socialized health care. One U.S. case, for example, shows how insurance companies took advantage of pregnant women who qualified for government-funded Medicaid. The companies claimed to give the women coverage, then denied their claims while still collecting the money from the government. This is just one case that demonstrates how willing people and companies can be to take advantage of those in ‘vulnerable’ positions.

There are many countries where access to quality prenatal care should not be an issue. Universal health care should eliminate the barrier, but it doesn’t stop women from having problems. As some studies have demonstrated, even with socialized health care, pregnant women in lower income brackets tend to have more challenging pregnancies, including problems like preeclampsia, premature birth and obstetrical hemorrhage.

Lower incomes make women more vulnerable to things like stress, domestic violence, poor personal health choices and drug use. It has been shown that stress is one of the precursors to birth issues like premature birth and low birth weight.

Studies also show that women experiencing poverty are more likely to experience abuse from their partner. This abuse often occurs alongside other issues, like financial dependence on the abuser and isolation from a support network. The stress, isolation and risk of hospitalization all take a serious toll. Women who are pregnant and have been in the relationship for a while may see violence escalate during their pregnancy.

The problems related to having a new baby don’t just impact the mom and baby. They’re a serious issue for everyone in society as well. Pregnant women are certainly in a place of high vulnerability, but they are not weak links. Women make up half of the population, so we need to address the gendered issues at play.

Addressing the reasons behind the systemic problems that women and new moms face will undeniably lead us to a better and healthier tomorrow for everyone.

Breaking the Silence on Vulval Pain

“Well, you need to have sex, if you don’t it will only make things worse,” the gynaecologist told me.

At the time, I was a single woman at the age of 24. For lots of people, being told to have sex wouldn’t be much of an issue, but when you experience pain during sex like I do, those are hardly the words of comfort you want to hear.

Since the age of 18, sex has been a problem for me.

As a young girl, sex education didn’t teach me which feelings are normal and which aren’t, and I never learnt anything about issues or difficulties I might face in the future. As a result, for years I thought painful was how sex was supposed to feel – other women must experience this pain and just get on with it, right?

But from the way everyone else spoke about sex, I felt confused. It didn’t match up with my own experience. I felt lonely, isolated and upset, so I turned to a doctor for help.

I visited my university doctor 12 times over the 4 years I was studying.

“Maybe it’s this…”
“Maybe it’s that…” 
“Can you test me for this..?”
“Can you do a swab for that..?”

I went back time and time again with my own internet-researched-suggestions of what might be causing the pain I was experiencing and what the solution could be. During each appointment I was examined, assured that physically I was fine, and told it’s all in your head”.

Being told a problem is ‘in your head’ is never easy to hear. At the time, I understood it to mean that there was no solution available to me and I would need to work this one out on my own. Did I need to be more relaxed? Was I too tense?

I was young and clueless and I had no guidance whatsoever. It wasn’t until I eventually opened up to my mum that I realised I wasn’t being proactive enough. Yes, I was doing all of the research I could do on my own but I didn’t really know what I was looking for. I didn’t even know at this point that I could request a referral to a gynaecologist myself.

Years passed by, and I visited the hospital every 4 months in the hopes my next NHS appointment would shed some light on what was happening to me, but the process moved slowly. Each scan ruled out another potential cause of my symptoms, which I knew was a positive thing – but with each month that passed, the experience began to take its toll on my mental wellbeing.

I started to fill the gaps between these appointments any alternative method I could think of – Acupuncture, Hypnotherapy, Psychosexual Counselling… Each new option gave me a glimmer of hope, but time and time again I had no luck.

I felt let down by my doctors. I felt as though no one was taking me seriously. I’ve cried in medical appointments more times than I’d care to admit and each referral to a different department left me feeling abandoned – as though no one was willing to take the time to learn about the pain I’d been experiencing for years.

I was the one coming up with potential solutions and offering ideas to my doctors, but every suggestion I made was cast aside. I even had one Gynaecologist laugh and shrug while casually asking me, oh, what are we going to do with you?!, trivialising what I was going through even further.

According to the NHS, vulval pain affects women of all ages, although symptoms often begin before the age of 25. A study on almost 5000 women in America showed 1 in 6 women experienced the symptoms of vulval pain for 3 months or longer, with 60% of women visiting more than 3 doctors, many of whom provided no diagnosis.

How is it that so many women are experiencing the same problem, yet so much of the medical world is completely oblivious to our pain? Instead of being supported, we’re being made to feel like we’re ‘crazy’. I believed something was really wrong with me until one day, I found an online forum that changed everything.

All of a sudden, I found a group of women from all around the world providing support and advice for each other. It was unlike anything I’d experienced anywhere else. It was the conversations I had in the forum that led me to find a doctor in the UK who sounded as though she had not only heard of, but actually treated, many people in my position.

After all that time, all it took was a 15 minute appointment to lead to the diagnosis I’d been searching for. It may have taken me 8 years to get here, but I can finally say it;
I have Vestibulodynia.

Argentina’s Abortion Law is History in the Making

This month, Argentina reached a turning point in its abortion legislation. After years of campaigning by a coalition of organizations and activists, the law on legal, safe and free abortions was finally debated in the Lower House and, after almost 24 hours of debate, a bill that would decriminalize abortion up to the first 14 weeks of pregnancy passed.

The debate in the Lower House was extensive and controversial, just like the issue being discussed. The final vote was very close, with 129 votes in favor, 125 against and 1 abstention. The law has yet to be debated and voted on by the Senate, but the fact that it made it this far for the first time is already impactful. President Mauricio Macri has stated that he won’t veto the law if it passes in the Senate, even though he is personally against abortions.

The National Campaign for Legal, Safe and Free Abortions has a very clear mission:

Educación sexual para decidir, anticonceptivos para no abortar, aborto legal para no morir”, meaning “sexual education to decide, contraceptives to not terminate, legal abortions to survive”. Campaigners are asking for much more than the right to decide when to have an abortion. They’re asking for proper sexual education and for access to contraceptives so women can avoid having to make the decision of whether or not to have an abortion in the first place.

This vote was historical because of the level of professionalism shown by those who organized the vigil and online campaign for the day. In a country where protests tend to end in violence and the destruction of public spaces, it was moving to witness a peaceful vigil. It is estimated that around a million people joined in front of Congress to wait for the final vote count. While some people spent a few hours there and then went home, others stayed for the entire duration of the debate. They camped outside of Congress all night in the cold to show their support for this legislation. They even held a concert!  

People were well-prepared to campaign online, too. A website called Activá el Congreso (Activate Congress) was set up to make it easier for people to reach their representatives through phone calls or tweets to try to convince them to vote in favor. The website can now be used to help the general public contact their Senators and express their support for the law.

There was also an online map called Aquí Estamos (Here We Are), where Argentinians who weren’t in Buenos Aires at the time could check in to show their support. Today, the map says that 18,914 people checked in from different parts of Argentina, but also from across the entire Western Hemisphere and Europe.

It has been particularly moving for me to see that even in a deeply politically polarized country like Argentina, people from different political parties and ideologies can join together for a cause. People on social media were shocked to find they could agree on something with someone they had considered an enemy because of party alliances. At a time like this, when people are losing their faith in democracy and their representatives, I think it was good for the public to see that they can make their voices heard and actually influence a government’s decision. It was refreshing to be reminded that we have enough power when we make our voices heard.  

In fact, it was not only the Lower House that heard Argentinians’ voices – the rest of Latin America heard them too. This vote has had an impact on the rest of the region. Now, a week later, other countries like Ecuador, Mexico, Costa Rica, Colombia, Chile and Peru are organizing similar movements and campaigns, inspired by the achievement in Argentina.

During the debate, I received messages from friends from some of these countries telling me how they wish something similar could happen in their home, both in terms of the effective organization of civil society and the fact that the bill passed in the Lower House.

This is a momentous step forward for women’s rights, and the feminist movement in Latin America is now saying, “if Argentina can do it, so can we!