When many people talk about Ehlers-Danlos syndrome, the symptoms they often focus on are hypermobile joints and elastic, velvety skin. However, since EDS is a connective tissue disease (and connective tissue is found throughout most of the body), the condition can cause a plethora of other symptoms – some of which may be considered “taboo,” and can be more difficult to talk about.
So if you’re experiencing unpleasant or even “embarrassing” symptoms, it may hard to discuss the details of what you’re going through with a doctor or trusted friend or family member. Talking about certain aspects of our health, like gastrointestinal issues, can often still feel awkward, or a bit “off-limits.” But you should never feel like you’re not supposed to talk about symptoms or side effects others may see as “taboo.” Even though they might be tough topics to bring up in conversation, it’s important we raise awareness of their effects so EDS-ers can feel more supported and understood.
We asked our Mighty community to share the “taboo” symptoms of Ehlers-Danlos syndrome we don’t talk about, and what they wish others understood about these symptoms. Let us know if there are any other “taboo” symptoms we missed in the comments below.
Here is what our community shared with us:
1. Urinary System Issues
“Bladder problems. Whether it’s peeing too much or not being able to pee at all. They’re both common for people with EDS but rarely talked about.” – Jessica T.
“Urethral diverticulum.” – Lizz R.
“Incontinence issues. I’m 26 and leak pee.” – Kari R.
2. Skin That Bruises or Marks Easily
“The bruises!! I wake up with new ones every single day and it’s problematic.” – Biranna L.
“Stretch marks and scars. I don’t get ‘little’ scars or ‘little’ stretch marks. No matter what the issue mine are ginormous and look like welts.” – Josephine W.
3. Difficulty Regulating Weight
“Being unable to lose or gain weight, depending on your body type. A lot of us cannot exercise or eat ‘normal’ diets, so losing or gaining weight is very difficult.” – Ashley B.
4. Women’s Health Issues
“Exacerbation of the menstrual cycle and hormones. For me it’s a nightmare for [three and a half out of four] weeks of the month. ” – Courtney M.
“I don’t know what it is, but it feels like someone’s taking a garden rake and ripping my vagina to shreds every now and then. I’ve heard that it has to do with the vaginal connective tissues coming apart, but I’m not sure. I wish people knew that it is so excruciating and all you can do is sit there and hope to God it passes.” – Mikki I.
“Pelvic floor dysfunction – whether it’s urinary incontinence, vaginismus, prolapses, etc. Since it involves an intimate area [so] it can be hard to get support.” – Caroline M.
“Pelvic organ prolapse. It’s extremely common and women have no idea they have it and are just quietly dealing with the symptoms. I prolapsed in childhood and didn’t get diagnosed until I was 27 because I was too embarrassed to ask a doctor about it until I met other EDS patients who had it too. I didn’t realize children and women who have never been pregnant can prolapse. But we do!” – Jill D.
“Along with pelvic organ prolapse we are also subject to rectal prolapse [and] rectocele prolapse. Many of us have GI motility issues which predispose us to chronic constipation, pair that with our overly stretchy connective tissues and surprise, surprise, very early on we can develop issues.” – Alexandria M.
6. Gastrointestinal Issues
“Bowel issues. Might need to have a surgery due to my butt being too stretchy. A bit freaked out but how do you talk to people about booty surgery.” – Amber B.
“Food digestion issues – especially vomiting.” – Diane F.
“Rooty. Tooty. Stinky. Booty. My tummy doesn’t behave properly and gives me all sorts of trouble… including copious amounts of noxious gas.” – Daisy R.
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“Fatigue but can’t sleep… I’m talking exhaustion, barely enough energy to breathe let alone shower, dress eat, etc.” – Sonia J.
“Things that are two steps for [most] people become 12 steps when you have EDS. People not understanding the feat it is to make myself a sandwich has been so difficult. I see grabbing every ingredient or movement as its own mountain and a sublux risk. Every move becomes calculated and risky. The amount of complexity in simple actions is something I wish others would get and I could talk about. It’s taboo to vent about how hard these simple things are.” – Emily L.
8. Pelvic Instability
“In addition to prolapse issues listed by others, we can have pelvic instability. Many deal with rotations of the SI joints, and even the pubic symphysis. People often blush when I bring that up, but there are ortho PT options to address it.” – Justine C.
9. Difficulty Swallowing
“Difficulty swallowing… then losing ability to speak (hoarse voice/no voice) after a choking/coughing fit.” – Kristen K.
“Esophageal dysmotility. One minute you’re eating, maybe at a restaurant with friends or family, and the next minute, your throat stops working. And now, you’re sitting there with food or even water halfway down your throat, just stuck there, won’t go down, won’t come up. And you’re just sitting there, horrified, humiliated, while your face turns red, and slobber starts running out of your mouth, as you furiously attempt to swallow down the lump in your throat. I rarely go out to eat anymore.” – Tammy B.
10. Having “Bad” Posture
“I have trouble holding my own body up, and that must be impossible for other people to understand. My posture is awful. My head is so heavy, my neck and back only have so much strength, and I can’t hold my arms over my head long enough for self-care anymore. When I’m out and about, it’s hard to stand up, so I’m always leaning on something – a wall, a chair or whatever is nearby. At work, I’m always slumped over my desk, or leaning back in my office chair, no in between. I feel like people must think I’m lazy, and sometimes I’ve even heard people who know me well call me lazy, but my muscles can only work so hard to hold up this wobbly body!” – Carolyn R.
“The constant fear of not being able to trust that your body is going to keep you upright throughout the day.” – Michelle R.
“The fear and doubt of never being able to live a fulfilled life or achieve your goals. The feeling of being a burden because you can’t go out due to your ankle and back being dislocated. People don’t understand what it does to you or how difficult it can be to be functional.” – Ashleigh F.
“There is a fear as a parent that a third party will see my chronic condition as a disqualification to raise my children despite them being clean, happy and fed at all times.” – Denyl B.
12. Painful Sex
“Sex hurts! You can dislocate during… totally sexy. Too tired… understatement. The list goes on. But you get the idea.” – Charity M.
“Dislocating joints during sex. Having to tell partners that you can’t do certain things during sex because something can/will dislocate can be kind of embarrassing but these kinds of talks are required for us with EDS.” – Haley T.
“Becoming masochistic because it’s either sexy pain or go without. Also taking off the orthopedic belt in the heat of the moment is sooo hot!” – Lorrie B.
Ehlers-Danlos syndrome does not “just” cause hypermobile joints and stretchy skin. It is important that others understand the many ways EDS can affect people so they can fully support the EDS warriors in their everyday life!