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…

Survey on Chronic Pain & Kink

sunny picture of a femme person in a field with an orange overlay and white text: Survey on Chronic Pain & Kink - Chronic Sex

Caroline Ballinger, a psychology student working in Dr. Karen Beale’s lab at Maryville College, is working on their senior thesis. They are researching the ways that people living with chronic pain cope and how that relates to their sexual behavior and satisfaction. This research survey has been approved by the Institutional Review Board and can only be taken by people who are 18 years old or older.

If you choose to participate, there is a link below that will take you to a 30-minute anonymous survey. You will be asked specific questions about sex and your chronic pain. Some of the questions are of a very sensitive nature, but please answer the questions as accurately and honestly as possible. If at any point during the survey you decide that you no longer want to participate, you can choose to stop taking the survey with no penalty.

If you would like more information about this topic, resources will be shared at the end of the survey, and you may contact Caroline Ballinger with any questions or comments, or you may contact her supervisor Dr. Karen Beale.

You can complete the survey here.

I took it and it was super easy. I hope you’ll consider taking it, too.

S2E6: Isabelle and Uterus Owners’ Pain

white background with teal, green, purple triangles - teal text: "season 2, episode 6" - white text on a purple circle: "Isabelle and uterus owners' pain" - teal text: "chronic sex podcast"

Endometriosis is an incredibly painful condition where the lining of the uterus grows outside the uterus. It’s vastly underdiagnosed, undertreated, and assumed to just be ‘bad’ period pain. This can cause excessive bleeding, pain with bathrooming, pain with sex, and much, much more. Endo affects approximately 176 million people worldwide.

Today I’m talking with Isabelle Lauren – a blogger, writer of erotica and sex toy reviewer. She believes in better sex education for everyone. You can hear more about her endometriosis story here. Follow Isabelle on Twitter and check out her site.

Abby Norman Wants You to Ask Her About Her Uterus

It’s Not All in Your Head: New Book Sheds Light on ‘Bad Medicine and Lazy Science’ Harming Women

The Mortal Ones: How Young Women Navigate Serious Illnesses

Don’t forget to enter the SYLK giveaway over on IG.

Check out more events I’ll be at over on FB.

Pelvic Floor Therapy: Day 1

B&W photo of a person with long dark hair wrapped up in a sheet and hiding their face; white text: "Pelvic Floor Therapy: Day 1" and "Chronic Sex"

Earlier this year, I made an urgent appointment with my primary care doctor. She’s also an OB/GYN, which I love. I had a spot of seborrheic keratoses on my pubis that alarmed me. I didn’t know what it was before the appointment but, in prepping for my boudoir shoot, I found this giant mole-thing.

It was kinda scary.

While I was there, though, I also brought up something I’ve been dealing with for a few months. I will wake up with pain in my pelvic region. At times, it can be throbbing, stabbing, or spasmodic. I’ll usually need to pee, but have a hard time easing up muscles to let myself pee. Afterward, the pain is still so bad that I have to get in the fetal position and shove a pillow in my abdomen.

After an invasive and dysphoria-causing transvaginal ultrasound, everything was found to be normal. Two weeks later, I reached back out to my primary care doctor to see if pelvic therapy might help. So now, in addition to spine physical therapy for a bulging disc, I get to do pelvic floor therapy.

Yay?

First appointment

Today was my first visit with my pelvic floor therapist. She is a little older and incredibly kind. I will admit, though, that I was a little nervous about the appointment.

Not only was I dealing with anxiety around having someone manipulate my vagina, but I also wound up dealing with some bowel incontinence earlier in the day.

a view of Kirsten's legs while she's on the toilet; her black boxer briefs from Tomboyx are visiable, as is a blue Ikea rug and while/beige tiles

Apparently, I’m not allowed to eat pineapple and drink juice anymore, says my GI tract.

I was worried about how this might affect things. Would we be able to do as much? Or, the more concerning question for me, was I going to just let loose everywhere?

Thankfully, I did not!

The first part of the appointment was spent talking about these spasms – when they happen, what might bring them on, etc. I mentioned my puzzling neurological stuff in addition to some rough abuse stuff I’ve been through.

It wasn’t exactly the easiest way to start a doctor-patient relationship.

Next, though, she pulled out a pelvis model and we talked through anatomy around the pelvic floor muscles.

pelvis model; the hip bones are visible along with the muscles that create the vaginal outside and the uterus poking out the top

Aside from the uterus popping out the top there, this is how a female pelvis looks. The hip bones are seen here in white with muscles in red. If you look closely, you can make out the urethra and vagina, too. One thing I always struggled to visualize was the different layers of muscles. This model comes apart so you can see the pelvic floor muscles both on the outside and inside.

The exam

It was really helpful to have a model to talk about the anatomy, but also for her to demonstrate what she was going to do with the exam.

The exam itself wasn’t horrible. I’m used to seeing my primary care doctor (who is also an OB/GYN) though, where I don’t have to make eye contact. That part got a little funky.

For those of you who haven’t had this type of therapy, the first thing is to switch from shorts to a hospital gown and lay on an exam table with a sheet over yourself. Next, the therapist feels around the outside of your pelvis – really, the outside of the labia and where it connects with your legs.

The exam moves to the inside, with the therapist using their fingers to check the muscles out. During different stages, they might ask you to clench or bulge/push out. This helps them to test the strength of your muscles.

My initial concern was that I might have loose muscles, but it’s the opposite! One thing we noticed quickly was that the left side of my pelvic floor was very tight. We then found the same at the bottom of my pelvic floor.

This isn’t super surprising. I tend to be tense in general. My left side is also the worst with every single health issue I have.

The treatment

For now, the first thing to do is start an at-home exercise. I mean, this is PT after all!

The one we decided to focus on for now is the submax:

This exercise is fitting for patients with pelvic floor tension or elevated baseline at rest. Begin at rest, contract your pelvic floor muscles gently, 70-80% effort. Hold the contraction for 5 seconds, then relax and release all tension for 5-10 seconds.

I am supposed to be mindful of my pelvic muscles, too. It’s easy to hold tension in pelvic muscles. Stress – ya know, like from begging Congress to not kill you – just makes that worse. Dealing with weakness in muscles can make them get tense trying to do their job, too.

There are some exercises that can help with pelvic floor tension as well. Right now, we’re avoiding those since I’ve got this bulging disc, but we will build up to them.

I’ll be seeing my pelvic floor therapist weekly before moving to biweekly. I’ll be documenting how things go here, too, because we need more resources on all this.

Have you ever tried pelvic floor therapy? What did you think?

Photo of my hand, featuring my silver band with a sapphire, interlocked via pinky with T’s

What a High Pain Day Taught Me About Hiding My Illnesses

TW: mentions of covert incest. This first appeared on our Medium publication page in November 2016.

I have always been someone who takes care of others.

It’s something that I have had to do.

Growing up in an abusive home, I had to take care of everyone — more emotionally than physically, but both for sure. I was the emotional partner for my mother, something called Covert Incest.

Because of that, I’ve always been incredibly independent. I have never wanted anyone else to feel like they had to take care of me. That goes double for my marriage, frankly.

Part of it is that I internalized the ableism that goes along with someone marrying a chronically ill/disabled person. I mean, after all, the expectation is that the ‘well’ one has to take care of the ‘sick’ one. Between that and my independence, I have never wanted my partner to feel like he had to take care of me.

He recently had LASIK and then got a cold a few weeks later, so I’ve been used to taking care of him. It wasn’t even a thing that I was worried about. He needed care and I was here. I mean, DUH.

Lately, maybe because of being more of a caregiver, I have been better about sharing and showing how I am doing and, in turn, my partner has been incredibly understanding and helpful.

Sunday morning, I woke up with intense stomach pain at 3 AM. It was clear that I needed to use the bathroom, so I did so. I spent a while in there, crying because the stomach pain was so bad. Frankly, I was wiping as quickly as I could because I was in so much pain that I thought I would puke, too.

It was not a proud moment.

By the time I was done, 20 minutes had elapsed. My stomach was still in an incredible amount of pain, so I went to the couch instead of my bed. I didn’t want to wake T up and, besides, I wasn’t sure sleep would visit me again.

It did, eventually.

When I woke up again, I was sure that I would be in a ton of pain. I wasn’t, which was perplexing, but I wasn’t going to question it, either.

And then, it happened.

A brick wall with an overlay that says ‘fuck this pain’ and a fancy curly doodle underneath

Over the course of a short time — something under five minutes — my pain went from not-an-issue to holy-fucking-shit-why.

Everything got heavy. I was barely able to hold up my phone. My muscles felt like what I assume they would feel like if I was able to run a marathon or do the Ironman.

I couldn’t hide it.

T asked if I was tired and I explained what was going on.

“What can I do? Ice packs? Biofreeze?”

Without hesitation, he jumped in and helped with whatever I thought might be helpful. A few minutes later, he had grabbed the Biofreeze and we slathered my arms. He snagged me an NSAID, too.

I don’t care if I can’t do much with my legs, but being unable to do much with my arms is a problem.

Within probably 30–45 minutes of the onset of the pain, I was asleep.

When I woke up, the initial pain was eased. My muscles were still in an incredible amount of pain, though.

T took me to our bedroom and asked what he could rub to help. He rubbed my hands, my feet, and my knees.

I apologized to him for all of this. I’m so good at stepping in and taking care of him, he said. He figures that I know how to best take care of myself, so it’s not a thing.

“But I’m always here to help when I can.”

In that moment, I realized a lot.

As vulnerable as so many applaud me for being, I still have a long way to go. I’m not nearly as vulnerable as I pretend I am.

I try to not let others see my illness fun firsthand. When I’m feeling bad and T’s at work, I talk on social media but rest. I write about what I’m going through, but in a safe space — at home, usually alone, and usually feeling slightly better than the time period I’m writing about.

This goes double for when I am sick at home. I cancel calls or FaceTime meetings with friends. I hide the extent of my illnesses from everyone — even T.

I have to stop pretending that I’m fighting against my illnesses on my own. The reality is so far from that — I am surrounded my love and support, and nowhere else is that true than at home.

Black and white photo of a bride and groom dancing

Why It’s Hard for Me to Communicate on my Illnesses and Pain

A few months ago, my husband and I had our first real fight after nearly a decade of being together. It had to do really with my lack of communication on how I’m doing. As much as I help others with communication skills within relationships, I’m not great at verbally communicating my own illness fun. It’s how I started writing about everything so, ya know… I just wrote this to him as a way to share more of my feels. This piece originally appeared on our Medium publication in February.

Hey love,

I know it’s hard for you to see what I’m going through. Invisible illnesses don’t make it easy for people to see all the ways they impact my life. I’ve gotten pretty good at coping with my illness fun, too, which doesn’t make it easy to tell when I’m struggling. Like a prey animal, I hide when my pain increases because it makes me vulnerable. I become an easy target for people to mock or harm.

Despite all this work I do with others on communication, I’m not great at it myself. I know that if I communicated what I’m dealing with better, it would improve both of our lives. It’s hard, though.

Just like showing my illness fun is vulnerable, talking about it is, too… except on steroids.

It’s easy and commonplace for me to notice my own pain or how my illnesses are being exacerbated on any given day. I have to do this in order to survive my day. Living is full of calculations for me —

Which extra medications do I take at which times? When do I use the ‘big gun’ medicines? Which of my non-medicinal relief methods can help, and in which order should I use them?

This has all become as natural to me as breathing.

Everything I do and experience is colored by pain and illness, even on the best days. When I talk about all of this, it reminds me how sick I am. It’s just a reminder of how differently you and I experience life. I know that my illnesses and pain doesn’t mean I’m lesser than you. Still, my depression and anxiety love to play on that.

It makes me scared, too. I get scared about how sick I am and how many more rough than easy days I have lately. I fear for what this means for my future — our future. My anxiety takes over and wonders:

Are my medications working? Do we have to switch again? I’m running out of options. How long will I live, then?

And then I wonder how long you’ll stay.

You say you won’t leave. Part of me knows you won’t. Still… there is so much evidence against relationships and illness. I can’t help but worry about this. How sick can I get before you decide it’s too much, even if you don’t tell me?

When I can’t cope as well with all this, it also makes me feel like a failure.

I’ve been sick since I was five. I’m so adept at hiding how painful existing is for me. Even physicians often don’t believe how pained I am because I smile and laugh.

The truth is, if I didn’t do those things, if I didn’t hide how I’m doing, I wouldn’t survive. If I had to talk about every single thing I endure and the pain I experience, it would remind me of how subpar all this makes me feel. It’s not easy on my mental health.

I know that my lack of communication sometimes makes living with me difficult. I promise that I will work on communicating better, even if we use code words for things. I will try to be more open about how I’m doing, what I can do, and what I need.

But I need something from you.

When I talk about my pain and illness state, please listen. Ask me questions. Hold my hand. Hold me. Recognize how hard I’m trying to break this habit of hiding.

It isn’t easy and it won’t happen overnight, but I’m trying.

You Can Help Stop the Reduction of Opiates in 2017

In case you haven’t heard, the latest tactic to fight the opioid overdose epidemic – and, concurrently, screw us chronic pain patients over – is here! For next year, 2017, the DEA is going to reduce the supply of Schedule II drugs.

Way to go, buttheads.

Chronic pain patients aren’t taking this sitting down, though.

My pal Anita is a badass. Clearly, she and I are trouble together.

Because of her chronic pain illnesses, she has started a petition on Change.org to ask the DEA to reconsider the reduction of the opioid supply. She’s been through a lot but asks that I not necessarily go into details about her life because “I want this to be ours all of ours.”

She goes on to say:

I have been a little aware of this restriction of Opioids for some time. I was sorta scared but also ignored it as I am in the process of applying for disability and that is stressful in itself. It wasn’t until my pain doctor, who I thought I had a great rapport with, said some ableist things and tried to stop my opioid meds all together… As upset as I was, it sorta woke me back up that relying on the system without keeping it in check, the system will always choose their own best interest. Though it was reading the article in the petition [and linked above here] that really just fired me so up that I had to do something. Being that I was an activist by way of physical protest and was used to doing things my body can no longer do, this was the only thing I could think of to do. I hope to at least create some awareness on the issue, get some people fired up and hopefully help people understand we aren’t addicts we just want to be able to live.

So, what can you do?

Sign Anita’s petition. Share it. Put it on Facebook and Twitter and Tumblr and other social media. Email it to your friends and family members.

Help us stop the ridiculous treatment of chronic pain patients here in America.