The Not-So-Sexy Side of Ehlers-Danlos Syndrome
Ehlers-Danlos syndrome is a funny beast. Day after day, I am constantly amazed at the weird and weirder things my body decides to do – or not do, as the case may be. I would go so far as to say that my collagen is inherently lazy, and no matter how much caffeine I feed it, it just never gets its act together.
Along with all of the usual things that people understand when you say the words “faulty connective tissue,” there are the rather embarrassing issues that many of us keep rather quiet about. As if pain, chronic join subluxations/dislocations and spectacularly large stretch marks aren’t enough, it seems that all of your insides need to join in the party – and when I say all, I mean all!
So – if you are squeamish about the inward workings of a lady, I would pop off and make a cuppa without reading any further! Due to everything being stretchy, prolapses of all varieties are all too common. I was aware of prolapses in your digestive tract, but had given little thought to potential pelvic organ prolapse until the last couple of years when something decidedly stopped being where it was supposed to be.
Initially I had noticed issues with discharge of sorts. It was thought to be chronic thrush, but after six months of medication, nothing had changed. I had already started having the odd issue with my urinary tract, but after a while, I started to suspect that my discharge was actually leakage from my bladder. I was constantly worried about whether I smelled, and had taken to carrying spare clothing around, as often I would leak just a little too much to get away with staying in the same clothes. I was also experiencing an odd sensation of heaviness/pulling. It wasn’t quite painful, but it was uncomfortable. Upon checking the strings of my coil one day, I found that there was a bulge. After some initial panic, I hopped it off to the doctors and mentioned all of the above.
Unfortunately, that first doctor appointment was bad enough to stop me seeking help for way over a year. He examined me intensely, but proceeded to suggest that the thing I could see and feel was nothing more then my vaginal wall – to which I exclaimed, “Well it certainly might be, but it isn’t where I left it!” He proceeded to suggest I probably had an overactive bladder, and gave me medication that in big letter stated “Do not take if you have a heart condition” – obviously totally out of the question for someone with POTS. I came out of that appointment and cried for hours in humiliation. He made me feel like I was visiting for attention, and it made me question myself for months. I really did wonder whether I was subconsciously looking for extra diagnoses and that everything I felt was actually totally fabricated.
Fast forward a year or so, and I was in bed with a guy for the first time since a rather nasty break-up years earlier. Just after everything had calmed down, he propped himself up and explained that I may want to get myself checked as he could feel himself being “pushed out” – hardly the conversation any young woman wants to have with a man. Red-faced, I nodded, although the issue didn’t stop there. I had also managed to stab him with my IUD (it seems the weird superpowers were going spare on the day that I was created).
I felt awful! As EDS gives us the power of being super stretchy, even things like the coil are likely to move about. Mine has shifted down over the years, and the combination between a coil sitting too low and your insides resembling a bouncy castle can wreck havoc on your sex life. Most embarrassingly of all, with the combination of a bladder that is too stretchy (thus retaining far more, and emptying far less then usual) and a prolapse comes the issue of leaking during sex. Again, not exactly a hot date. That night I had to change my bed because of the sheer volume that had literally been knocked out of me – feel free to stop reading this at any time!
After another few months of trying to ignore it (needless to say with a very inactive sex life), I finally built up the courage to mention it for the second time. I was already under a urogynecologist, and brought it up there, thinking I would stand the best chance of getting it taken seriously. She told me I would have an internal examination during one of the tests, and so I agreed to wait until then. Unfortunately this didn’t take place, and so a few days ago, I traveled down to see a member of her team to ask to have it checked.
Roll on embarrassing appointment number two. This second appointment was little better. Initially, the nurse tried to suggest that the man had made it up just to be mean to me. In all honesty, this is so unlikely that he would have deserved a medal for inventiveness if this had of been the case! I didn’t even know much about a prolapse; could you really imagine many men being knowledgeable enough in that area to use as a way of being nasty?! I explained that I could also notice a difference and went into detail explaining my symptoms. She eventually agreed to attempt an internal examination, but persisted in her attempts to dismiss it. She said she could feel a bump, but that lots of women had this and it could be considered normal. She said she could feel it descending upon talking, laughing and coughing, but that she wasn’t really sure what it meant.
Eventually she called an on call gynecologist, so after a 30-minute wait, I was finally able to get it looked at by a specialist. Finally, after a two-year wait, I was diagnosed with “grade two descent with a cystocele” – essentially this means my bladder is prolapsing into my vagina.
The gynecologist told me there is no reason a normal 28-year-old who hasn’t given birth would have this, but that due to my collagen being overly stretchy, it is unfortunately very common in women with EDS. She explained it will either require surgery or a peccary (a device that’s inserted to support the vaginal wall), but it would require a more in depth look before anything can be sorted. So, yet another label added to the list, and this one for me is probably one of the worst.
The impact this has had on my confidence, sex life and desires to get into relationships are vast. As if having chronic health conditions weren’t enough, EDS has added yet another source of humiliation, embarrassment and inconvenience to my life. I have no idea how you work your way past this and into a happy and healthy long-term relationship when you feel like you need to mark your nether regions with a “do not enter” sign. It is bad enough that you are in constant pain, with joints that flop about more then a rag doll without it taking away your enjoyment in the bedroom to boot.
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