Sexual and Reproductive Health and Rights for Women with Disabilities

Today is World Contraception Day. As we reflect on the role that birth control and reproductive rights have played on modern day society, we must not forget those who continue to be denied access to sexual- and reproductive health (SRH) services, such as women with disability. Disabled women are often denied contraceptives or sexual health services because they are perceived to not have sexual needs or sexual lives.

More than 15% of the world’s population is affected by disability, including physical, sensory impairments, developmental and intellectual disability and psychosocial disability. This means a significant portion of our population continues to experience discrimination on what is regarded as basic human rights.

In 2007, the United Nations Convention of the Rights of Persons with Disabilities stipulated international law that all governments should guarantee access to sexual and reproductive health to people with disabilities. However, in practice, women with disabilities face challenges in accessing SRH services for a number of reasons:

  • They are infantilised
  • They are viewed as asexual or hypersexual (lacking control of sexual urges)
  • They are viewed as incapable of reproduction or too weak to carry a pregnancy
  • They are viewed as being unattractive or unfit for marriage or being sexual partners

These myths are far from the truth and are demeaning to people with disability. Yet, these prejudices continue to be the major deterrent in disabled women receiving SRH services. In part, these misconceptions make disabled women (and men) vulnerable to sexual violence and abuse within our societies.

There is silence in addressing the lack of access to sexual health services for disabled women. In contribution, the practice of forced sterilisation and abortions perpetuates the silencing and is in direct violation of disability rights. Our SRHR (sexual and reproductive health and rights) policies do not support or uplift disabled women and this is worrisome. Not enough research is done to understand and recognise the sexual desires and needs of disabled women.  Furthermore, we do not explore the intersectionality of gender and sexual dynamics that disabled people experience i.e. LGBTQ experiences.

Most non-disabled people, health workers in particular, have sometimes been described as being disinterested, lacking awareness and understanding of women with disability and their needs. There is failure in promoting inclusiveness. Many developing countries such as Zimbabwe still have general obstacles to overcome regarding SRHR. Unfortunately, in addition to those challenges we do not have policies that address the sexual and reproductive rights of disabled women.

How do we improve the challenges that are faced by disabled women? Well, we can start by:

  • De-stigmatisation and providing information for better understanding
  • Creating awareness for SRHR that benefit people with disability
  • Improving access to health systems, facilities and services
  • Improving home-based care and community outreach for client education
  • Including disability in SRHR policies, laws and budgets
  • Including women with disabilities in policymaking, strategizing and health research

In conclusion, there is still much to be done to improve the sexual and reproductive health and rights of persons with disability. It is important to have the conversation about disability and sexuality to remove prejudice and misinformation.

What Do the New Cervical Cancer Screening Guidelines Mean for American Women?

Many might imagine that only women “of a certain age” get cervical cancer, but that’s not true — women of all ages must be screened. Now, some women will have access to a new option for screening.

New government guidelines developed by an expert panel — the U.S. Preventive Services Task Force (USPSTF) — state women between 30 and 65 may undergo screening for cervical cancer by getting tested for high-risk strains of human papillomavirus (HPV) every five years. This frees the patient from having to have a Pap test too.

The USPSTF previously recommended the use of both tests every five years for the age range. The co-testing method is less-preferred since it requires women to undergo more procedures and tests, compared to Pap testing alone or HPV testing alone. Another alternative exists, per the guidelines — getting the Pap test done every three years. The guidelines haven’t changed for women under 30 and over 65.

Keeping Screening Necessary

Women now have more choices to screen for cervical cancer, but the primary concern remains encouraging women to get screened in the first place. The USPSTF stresses the need to focus on adequate screening, no matter the method chosen, since regular screening will ultimately lead to lowering cervical cancer rates.

The findings have come a long way in terms of protection and detection. In a 1989 study, papillomavirus DNA was found in the vapor of warts that were treated by carbon dioxide laser. The study revealed the dangers of possible inhalation exposure to papillomavirus. This essentially meant that the risk of exposure to this disease is even higher than wehad  initially believed, although high-risk HPV strains spread via sexual contact still cause nearly 90 percent of cervical cancers.

Many HPV infections do clear up by themselves, but the virus can linger and lead to an eventual diagnosis of cervical cancer. Both the Pap and HPV tests analyze a woman’s cervical cells, but the Pap test looks at whether or not they’re cancerous while the HPV test searches for HPV infection. Co-testing itself takes one swab, but doing both tests can heighten women’s nerves.

Why Update the Guidelines?

The update has come as a result of revelations from current studies. It was discovered that testing for high-risk HPV strains, rather than using Pap tests, led to an increased rate of discovery of precancerous lesions within the cervix . The study proved the strong effectiveness of high-risk HPV testing utilized alone to screen for cervical cancer.

Both co-testing and HPV testing alone proved a little more effective to reduce cervical cancer mortality rates than Pap tests alone, per a recent study in JAMA. A simulation model found that 830 in 100,000 women died of the cancer if they went without screening, and the model also found:

  • If women screened with only the Pap test, the mortality rate decreased to 76 deaths for every 100,000.
  • The death rate dropped to 30 deaths for every 100,000 women with co-testing starting at age 30.
  • If women screened every five years with HPV testing, starting at age 30, the mortality rate decreased to 29 for every 100,000 women.

Any Downsides to Choosing the HPV Test?

Co-testing and HPV testing alone both maintain increased rates of false positives than using the Pap test. Co-testing holds the highest rate of false-positive results, but the USPSTF states that each of the recommended screening methods — co-testing, Pap testing alone and HPV testing alone — offer reasonable balance between harms and benefits.

The guidelines suggest that women could possibly conduct HPV testing for high-risk strains effectively at home. Women would provide their sample and mail it to a lab for analyzing — much like modern ancestral DNA testing. This would also increase screening rates while decreasing mortalities from cervical cancer thanks to prevention. This method also could potentially make women feel more comfortable about the procedure since they’re doing it themselves, especially women who have fears related to gynaecological exams.

Additional studies will determine if HPV vaccinations, which lower HPV infection risk, might affect how HPV testing functions in cervical cancer screening. However, this could be a great shift for many women — time will tell, but we’re hopeful.

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.

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.