As you may remember from one of my older posts, EDS causes problems only a woman can get. Pelvic organ prolapse is usually something only reserved for those lucky women who are older and/or have had kids, yet with EDS we often get this thrown into our 20’s free of charge!
Pelvic organ prolapse referes to a prolapse within the pelvic region. A prolapse means that the muscles and ligaments (in this case within the pelvis) have stopped being able to support the organs sufficiently, and this leads to hernias. In pelvic organ prolapse this can be concerning the bladder (a cystocele), the rectum (the rectocele), the small bowl (an entrocele), the uterus (utrine prolapse) and a vaginal vault prolapse (a prolapse following a hysterectomy). With pelvic organ prolapse these organs bulge into the vagina causing an array of fairly uncomfortable symptoms.
Having finally been diagnosed with a prolapse after a 2 year fight with medical professionals, I was eventually referred to a local gynaecologist to get things sorted. Being of typically English sensibilities, it was not exactly the least embarrassing appointment I’ve ever attended!
I spent the few days before my appointment in obligatory panic mode. What if I was brushed off again? What if it wasn’t a real illness and I had made everything up? What if I would be laughed out of the clinic in shame?! I am aware non of this was a logical thought process seeing as a professional had already diagnosed me, but with EDS a diagnoses is often brushed aside when it seems inconvenient for the next professional to take into account. I am so used to having to fight my corner that I get huge anxiety before each and every appointment. With this appointment, I thankfully needn’t have worried.
As soon as I stepped into the room, the doctor was friendly. The more nervous I am, the more I spout random nonsense, and what with this particular appointment concerning my lady bits, there was a lot of nonsense being spoken. Thankfully, she was more then happy to join in with my nervous chatter.
She started off with some questions concerning my symptoms. We spoke about pain and a downward heaviness down below, issues with incontinence, issues with intercourse etc. She kept the questions going, so there were no awkward silences in which I could get painfully embarrassed.
Next came an internal exam – I was expecting the cystocele, but it did come as a bit of a shock when she also diagnosed a utrine prolapse and rectocele. It seems the party for one just turned into a party for three down there.
My options for treatment at this stage are limited. I will eventually require surgery as these issues don’t fix themselves, but as I am still to have children, and own particularly crappy collagen, they would rather try ‘conservative measures’ first. These consist of specialist physio therapy focusing on training up my rather lax pelvic floor, and the use of a pessary – a silicone device inserted into the vagina that helps to hold everything back in place.
The physio doesn’t sound like a whole lot of fun – obviously to retrain your pelvic floor, it requires feedback, and from what I can gather this will be via another person and via specialist equipment. I am not by nature prone to flashing my bits to random strangers in hospital settings, and this will be no less embarrassing then turning up to my own wedding naked. I know that. The physio will largely be aimed at trying to halt the progression rather then curing it, and that is a thought thats hard to swallow.
The pessary is probably the thing that I am struggling most with. There are many different options from your doctor to choose from, each supporting different areas and providing different levels of support. Some will support just the uterus, the bladder, the rectum – some will support more then 1 area. There are things like a ring pessary for those that don’t require as much support, and then there are ‘space filling’ pessaries for those that require a little more help. I am unfortunate enough to end up with the latter. I have been given a cube pessary. This is basically a silicone cube which has indents in that form suction to support the walls of your vagina, complete with a rather undignified silicone cord – just incase you manage to loose where it is up there! For the cube pessary (all pessaries require different care), it needs to be removed every night, washed, and left out until the morning, when you have the really fun job of trying to stuff it back up there whilst trying not to swear – really not an easy task, especially when you fling it half way across the room and have to race your way there before the dog thinks he has a new chew toy (yes, that really happened)!
It is not so much the rigmarole of using the pessary that is the problem – its knowing that I need to use it. I somehow feel less attractive. As it can’t be left in during intercourse, I am dreading the day I will need to push a hand away and shimmy off to the bathroom to get the thing out before things can get started – spontaneity in the bedroom is truly a thing of the past. I feel embarrassed knowing that its now a part of my personal life, and worried about how people will react. As a young woman of 29, it feels unfair that my body has given out now – it is rare for women that haven’t had kids and especially rare for young woman to suffer with pelvic organ prolapse, but thanks to EDS it here, and its here to stay. I can cope with so many of the joys that EDS brings to the table – the pain, the subluxes and dislocations, the difficulty swallowing and digesting food, the fatigue – but for it to affect my lady bits just seems like a massive step too far.
As if I wasn’t a crap enough catch before, yet more super attractive health issues are handed to me on a plater!
Tomorrow morning I have a super early appointment to go back to the gynaecologist. Pessary fitting is a bit hit and miss – its basically trial and error to find a shape and size that works for you. Unfortunately mine is shifting down throughout the day and pressing into bits that really don’t want to be pressed. With the right size and shape, in theory it shouldn’t move about, expel from the body or even be noticeable to the wearer – lets hope I find the right one soon! The doctor very kindly offered to see me after being on a night shift to try another size or shape, so I somehow need to make sure that I am up bright and early to duck in for a repeat embarrassing experience.
EDS is one pretty tricky bedfellow to manage these days.