Giddy just put out a piece on Ehlers-Danlos Syndrome (EDS) and sexual health. Read more here.
Category: sex
Hypermobility and Sexual Function Study
Sexual Functioning and its Impact in Relation to EDS
Researchers: Tom Virden, Ph.D. (he/him) & Brona Hagins, M.A. (she/her) at Midwestern University
In layman’s terms, this study is to assess how hypermobility/EDS may negatively impact gynecological health, sex, and relationships. Therefore, it is only open to those who were
- assigned female at birth,
- aged 18 years or older,
- and who have a hypermobility disorder such as Ehlers-Danlos Syndrome (EDS).
What Is The Purpose Of This Study?
This research study is open to those who have been diagnosed with a hypermobility spectrum disorder (which includes Ehlers-Danlos Syndrome (EDS). The purpose of this research study is to understand the gynecological impacts of hypermobility.
The questionnaire will assess gynecological concerns and their impact on individuals with hypermobility regarding avoidance, fear, relationships, sexual dysfunction, and quality of life. Quality of life will be assessed using the World Health Organization Quality of Life brief scale (WHOQOL-BREF). Sexual dysfunction will be assessed using the Female Sexual Functioning Index (FSFI).
Original questions are follow-up questions to the two included measures, such as sexual functioning’s impact on various relationships.
The study aims to assess the psychological and day-to-day impact of gynecological concerns in hypermobile individuals. Additionally, it will provide guidance as to the gynecologically-informed treatments utilized/recommended in the hypermobile population.
What Will I Do?
We’re inviting you to participate in a research study. This study consists of an online survey. You will be asked to complete a series of questions about your sexual health and gynecological functioning. This survey may be completed on any computer with internet access. You are free to skip any questions that you would prefer not to answer.
Participation is completely voluntary. If you agree to participate, you can always change your mind and withdraw. There are no negative consequences, whatever you decide.
- If you have any questions about or do not understand something on this form, you should ask the research team for more information.
- You can and should discuss your participation with anyone you choose, such as family or friends.
- Do not agree to participate in this study unless the research team has answered your questions and you decide that you want to be part of this study.
Risks
Some questions may be very personal or upsetting. You can skip any questions you don’t want to answer or stop the survey entirely.
- Online data being hacked or intercepted: This is a risk you experience any time you provide information online. We’re using a secure system to collect this data and are not collecting identifiable information, but we can’t completely eliminate this risk.
- Breach of confidentiality: There is a chance your data could be seen by someone who shouldn’t have access to it. We’re minimizing this risk in the following ways:
- Data is anonymous.
- We’ll store all electronic data on REDCAP, a secure online survey server, or on a password-protected, encrypted computer when statistical analyses are conducted.
In the unlikely event that you suffer an injury or illness directly related to your participation in this research project, upon your request, Midwestern University will arrange for the provision of treatment for such injury or illness at the closest medical facility. Payment for such treatment will be your responsibility, although your commercial insurance carrier if any, may pay all or part of the medical expenses that you might incur. Midwestern University will not pay any monetary compensation for research related injury or illness or pay for treatment outside any MWU-affiliated Hospitals or Medical Centers. You are not waiving any of your legal rights by volunteering to participate in this study.
Benefits & Compensation
Although you will not benefit directly from participating in this study, you will make a major contribution to the information known about gynecologically related concerns impact in hypermobility. In future, others may benefit because doctors will learn about how hypermobility affects gynecological functioning.
You will not be compensated for participation.
How Long Will It Take?
This questionnaire should take no more than 15 minutes to complete.
Confidentiality And Data Security
We will not collect any identifying information for the research.
Where will data be stored?
On the servers for the online survey software, REDCAP.
How long will it be kept?
For the duration of the research project (estimated < 1 year).
Who can see my data?
- We (the researchers) will have access to de-identified (no names, birthdate, address, etc.) information. This is so we can analyze the data and conduct the study.
- We may share our findings in publications or presentations. If we do, the results will be de-identified.
IRB & Who to Contact with Questions
This study has been reviewed and approved by the Midwestern University Institutional Review Board (AZ #5070). If you have questions about this research project and the research subjects’ rights please contact the principal investigator, Tom B. Virden III, Ph.D., at (623) 572-3868 or email at tvirde@midwestern.edu.
If you have any questions regarding the rights of being a research subject, please call the Office of Research and Sponsored Programs at 623-806-7670 or via email: AZORSP@midwestern.edu.
You can also contact Brona Hagins, MA, at bhagins67@midwestern.edu.
After taking this survey, I would suggest listing information on the first page in the last question about if you’re not currently experiencing sexual function issues but have in the past. There isn’t another spot to list that information later on.
To participate, click here.
‘Sexual RAlationships’ Facebook Live with NRAS UK, Sept 15
Has rheumatoid arthritis negatively impacted your relationships, intimacy, or sex life?
Don’t miss the ‘Sexual RAlationships’ Facebook Live on Wednesday 15 September at 6 pm BST. That’s 1 pm Eastern. You can convert to your time zone here.
Lohani Noor is a psychotherapist and psychosexual therapist. She recently was an expert on BBC Three’s Sex on the Couch. She is also the author of 12 Steps to Sexual Connection, available via Audible.
Be sure to register. You can email questions ahead of time by Sept 10.
The National Rheumatoid Arthritis Society (NRAS), is the only patient-led organisation in the UK specialising in rheumatoid arthritis (RA) and juvenile idiopathic arthritis (JIA). You can follow them on FB, IG, and Twitter. Make sure to check out their website as well!
You can view the recording below:
Do you feel like you can talk to your HCPs about sex?
Pals, I’m running research! Come help!
When we say ‘HCPs,’ we mean healthcare providers. This could be a physician, nurse, medical assistant, physical therapist, or another medical professional directly involved in your care.
This survey is to measure concerns, attitudes, and ideas you may have about the conversation between health care providers and patients on sex. This survey is for those in a patient role and is only opened to people 18 and older in the United States or the US territories.
The information you share will be used to create a comprehensive and accessible guide to help you and others navigate discussing sex with providers easier in the future. This guide will be free and available via a number of methods so that you can utilize the one most accessible to you.
The answers you provide will be anonymous and only utilized for research or education around the discussion of sexuality and gender within healthcare. The cumulative percentages for questions will be used in order to discuss and share information with others. No identifying information will be collected, but you will be asked a number of sensitive questions around sex, sexuality, and healthcare interactions.
What is involved in this research?
This study consists of a one-time online survey using Google Surveys. ORCHIDS – The Organization for Research of Chronic Illness, Disability, and Sexuality – is conducting this survey. You can learn more about our group at orchidsresearch.org.
It should take approximately 30-45 minutes to complete the survey.
Are there benefits to being in the study?
There is no direct benefit for you. By taking part in this survey, though, you may contribute to knowledge about talking with providers around sex and sexuality. This may be used in the future for medical education as well as presentations and other learning materials.
What are the possible risks of the study?
There are no physical risks associated with this study. There is the potential to relive difficult situations throughout the course of this survey. You may stop your participation in this study at any time by closing the survey.
As with anything online, there is a potential risk of loss of privacy. We will make every effort to keep your information private. Naturally, this cannot be guaranteed.
What are the costs and compensation?
There are neither costs nor compensation.
At the end of the survey, you will be given an additional link to put in your email address if you want to be among the first to access information about the guide we’re creating.
Who do I contact for questions?
If you have questions or concerns, please contact Kirsten Schultz. This can be done via email (kirsten -at- chronicsex.org).
Do you agree to participate in this study?
By clicking ‘next,’ you allow us to utilize your de-identified information in order to discuss issues related to sex and sexuality. This also allows us the ability to highlight the concerns you’ve shared in the final guide that will be created and available for free. You also certify that you are a person age 18 and over currently living in the United States or one of the US territories.
This survey will close on November 1, 2019.
If you’re interested, please note that you must live in the United States (or US territories – such as Puerto Rico or Guam) and be 18 years of age or older.
Ready? Let’s go! http://bit.ly/HCPsexuality
Does planning lead to better sex?
Did you know planning for sex leads to a more fulfilling sex life?
Well, that’s kind of true.
According to the Guardian, “Those with personality traits falling under the conscientious umbrella i.e. people who are efficient, achievement-oriented, disciplined and dependable, are more likely to be sexually satisfied than those who pride themselves on a devil-may-care approach to intimacy.”
This study was conducted on mostly hetero couples and, probably, mostly cis peeps. It was not noted if any dealt with chronic illnesses, either, and that’s important.
I plan everything or, at least, that’s what my calendar would make it look like. Unfortunately, the reality is quite different.
Sure, I plan for deadlines and appointments. I have to or, often, I might not remember them. Over the last few years, I’ve let go of the perfectionist organization I’ve kept up since… like grade school. On top of that, many of my days are spent trying to make it to tomorrow. As much as I talk about sex, there is a certain disregard for it if my pain levels are high.
Well, if the info isn’t as straightforward as news articles are making it seem, what should we take away from this study?
Honestly, if your takeaway is that it’s okay to plan for sex? That’s okay, especially if it strikes up important conversations between you and your partners.
We just have to keep in mind that these kinds of studies aren’t geared towards queer, trans, and disabled/chronically ill people… at least, not quite yet.
RA Is Officially Linked to Sexual Issues
While patients like me know that our health issues can interfere with our sex lives, it’s actually starting to be researched and documented!
That’s right – now you, too, can find seemingly redundant research telling you what you already know.
I know it’s easy to feel that way. The truth is, though, that research is finally catching up to common knowledge. Without basic research, it’s hard to expand and do what feels like ‘real’ work. Take Tristano’s 2014 writing on rheumatoid arthritis and sexual function, for instance. While it may be what we patients consider obvious knowledge, it opened the eyes of a lot of health care providers to the subject of sex and chronic illness.
Recently, a literature review on sex and RA came out. It found that there was a significant increase in what they call ‘sexual dysfunction’ for RA patients.
Back in 2016, a study showed that nearly a third of RA patients deal with major factors that inhibit their sex lives. That includes fear, insecurity, pain, comorbidities, and so much more.
What comorbidities? Well, secondary Sjogren’s syndrome is a major one. It often goes undiagnosed and un- or undertreated. These studies also have an average participant age of late 40s to late 50s, too. That means that issues associated with menopause might be being included as RA symptoms.
Medications bring their own side effects, too.
Unfortunately, most of these studies are being conducted on cisgender patients in heterosexual relationships. Between all this and the damage done by the phrase ‘sexual dysfunction?’ It makes me want to do my own research…
And I’m actually starting some in a few months in a larger population… but that’s a topic for another time. Stay tuned…
A Sex Toy Tester’s Tips for Erectile Dysfunction
The word men is used in this piece. I left it as such because it’s a good critique of toxic masculinity. While many penis owners who aren’t men, everyone winds up harmed from toxic masculinity.
Talking about erectile dysfunction can be intimidating. Sadly, men are taught from their teen years that they need to always be strong, masculine, sexual potent.
Even if we discount serious ED issues caused by health problems – which should be talked about by doctors – performance letdowns happen.You may simply not be at the top of your shape, taking meds which interfere with your sexual function, experiencing issues with your partner. The list of possible causes is endless.
Just be aware that it happens to EVERYONE with a penis at some point in their life.
Continue reading “A Sex Toy Tester’s Tips for Erectile Dysfunction”
Masturbation, Chronic Illness, and Queerness video!
Y’all, I’ve got a story to tell. It starts with me nerding over Eva from What Is My Body Doing? at the University of Guelph Sexuality Conference in 2017. The latest chapter ends with Eva releasing this pretty cool video of a recent convo.
She is the cutest! I am so incredibly happy to know Eva and to watch her come into her queerness.
Make sure to check out her other amazing videos on YouTube. If you like her stuff, support her on Patreon! Want to cruise her social? Follow her on Twitter, Instagram, and Tumblr (where you can ask her anonymous questions!).
Why talk about crippled sex?
“To realize our sexual freedom, our goal must be to infuse the dominant sexual culture with the richness of our own experience. We must celebrate our differences from those without disabilities. We must see that our differences in appearance and function which are the sources of our degradation also contain the seeds of our sexual liberation.”
From Barbara Faye Waxman’s “It’s Time to Politicize Our Sexual Oppression” in the March/April 1991 issue of The Disability Rag
It’s often thought that we have “more important things to deal with” than sex, which is portrayed as some sort of “luxury” item for us (The Ultimate Guide to Sex and Disability, pg 5). More and more often, we are infantilized or put into various sexual boxes that we don’t fit in.
The fact is that chronically ill and disabled people have sex. We can be sexual in a number of ways. Our sexuality ranges from asexual to pansexual and more. We may be uninterested in sex and relationships or we may be polyamorous.
Our partners might be abled or not. Like my husband, they might struggle with knowing how to help or
We’re sexy as fuck. Like the tagline of the site says, sexuality doesn’t depend on ability.
People who aren’t in our shoes aren’t used to what we face – worse yet, they may hold on to outdated ideas about sexuality and disability. Our providers don’t understand what we’re facing. They may fear addressing our sexuality or be ill-equipped to do so. After all, 54% of medical schools in the United States and Canada provide between 3-10 hours of sex education. Out of that, most of the education provided is around fertility and basic function (though the latter only usually for cis males).
As I write this post, I’m sitting in my hotel at the Playground Conference in Toronto. My time here has been wonderful, but perhaps the most impactful thing so far has been seeing other disabled people here.
At our panel yesterday, I felt like we were leading a sermon for our siblings dealing with this ish and for partners and loved ones who wanted to learn more. We got such thoughtful questions from our fellow peeps and allies alike that it was so affirming – affirming of the work I do, how much I talk about things, the vulnerability I try to show, and so much more.
It’s enough that I struggle to put it into words.
That’s why I talk about this. Because we deserve to be heard and understood.
Crip Bits: Fucking While Cripped Part 3 from Sins Invalid | Feb 26th
What are you doing on Monday, February 26th?
Sins Invalid is having a third installment of their “Crip Bits: Fucking While Cripped” FB Live series!
Check out the details on the FB event here.
PS: I’m presenting in Toronto this Sunday at the Playground Conference! Follow #pgconfchronic on Twitter Sunday morning to keep in touch with the conversation.