Part Two of ‘The Not So Sexy Side’…

Part Two of ‘The Not So Sexy Side’…

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.

1-pessary-image
A selection of different pessaries

 

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.

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Being Dismissed After Diagnosis

One of the most frustrating things about Ehlers Danlos Syndrome is the utter ignorance held by most medical professionals I have come across. The two areas who seem to dismiss it most are rheumatologists and physios. Both of whom I have come up against in the last few weeks, and both of whom I have been very close to wanting to hit!

I was diagnosed with EDS years ago. You would think that the label would suffice, and that treatment could then be forthcoming – this would be the logical route for things to take. The reality though is very very different.

Every time I see someone new, I can almost guarantee the comments and ideas that will get thrown about. First off, it is never taken as read. Every appointment I have with a new person leads to a completely fresh assessment – running through the beighton score, coming out with totally different scores every time. Dismissing the pain, and usually leading to comments about how its ‘just a bit of hyper mobility’ or that hEDS is just ‘Benign Hypermobility Syndrome’. Every time this happens, a little bit more of my sanity is stripped along with it.

When would this ever happen with another illness? Would someone with a broken leg need a new X-ray every time they saw a different doctor just to prove it was broken? Would they be told its just a little sprain when the X-rays came back with proof? Would someone with heart failure really need a new set of tests so that they would be believed? Why is it that EDS is treated so differently?

Another idea that repeatedly comes up is that you aren’t that bad if you don’t score the whole 9 points on the Beighton score system. In reality, if you score over the accepted number, and/or have hyper mobility in other areas then it should still be counted. Just because someones knees may not be hypermobile does not suggest that issues with all other areas, and areas that aren’t included in the scoring system are not causing problems. This woman genuinely had the guts to tell me that my shoulders and hips were not a problem as they aren’t included in the list of hypermobile joints in the test! Apparently the fact that they continuously cause me pain, and sublux constantly are not issues worth considering. She made it clear that she had other patients who scored much higher, and that obviously as I didnt have the whole 9 points, it was ‘benign joint hypermobilty syndrome’. When I explained to her that a) I fit the criteria for hEDS (taking time to explain the other criteria she hadn’t touched upon), and b) benign  joint hyper mobility syndrome is no longer a term being used anymore, she came out with a very sarcastic ‘Well you’ve been reading up then’.

I was also told yet again that my pain was obviously effected by my mental health. In all honesty, with EDS it is more then likely that this is the other way round. Sure, I have had mental health problems in my time, but I can quite safely say that I have the same levels of pain when I am happy as I do if I am depressed. The pain levels don’t change – but my ability to cope with it does. Our pain is not psychological. It is caused my recurrent joint subluxions and dislocations – in no other area would someone with a dislocated shoulder be told that it doesn’t cause pain, so why is it that we are told this all the time? It is not the first appointment that I have been to where I would have gladly offered to dislocate their joints and asked them if it was really pain, or if it was just psychosomatic. By repeatedly insisting that we don’t really have pain, they are belittling the illness and continually knocking our confidence. Just because our joints are capable of moving further then most does not mean our bodies are designed to cope with it – it still damages, and it still hurts just like it would to anyone who isn’t hypermobile. Alas, I am not the incredible stretchy woman, as much I would like to be.

This particular referral was at the request of both my physio and GP. They both thought it would be useful to continue the work we had been doing, so I wasn’t expecting the reaction I had from this woman. She took great care to tell me that I had already had my fair share of appointments, and that this service is for everyone, and not just me. She told me that it wouldn’t really help me, and that they couldn’t see me long term (which I am quite aware of thanks), and really its just about ‘teaching you the skills to manage your condition’. She made me feel like I was some sort of greedy NHS hypochondriac rather then a patient – as if spending my time at a physio is what I really love doing in my spare time. I am fully aware that this is not long term, but I am also under the impression that I would have been refused a referral if it was deemed unnecessary. They don’t hand these appointments out like sweets. You wouldn’t leave someone recovering from a broken leg halfway through their treatment, so I find it quite unnerving that that is precisely what she wants to do here. Just because this is a long term condition really shouldn’t mean that you aren’t allowed to access treatment that will help you manage better in the long run.

The last big thing she said that was actually extremely upsetting was concerning the care that the social services have deemed appropriate for me to have in place. She looked at me like I had 5 heads when I told her about it, and then proceeded to tell me that ‘you shouldn’t be using it for things that you can do yourself like washing and cooking, you should be using it to better your life’. This was about 2 seconds after lecturing me about pacing for fatigue. Does she really think the social services have spare money flying around to give to people who don’t need the help? The hours I have been awarded are for things like personal care, assisting with cooking/cleaning and getting out and about. They were awarded because I can’t manage to do those things an awful lot of the time, and when I do manage them, I don’t manage to do anything else. In short, I need the help with the things I struggle with so that I can ‘go out and better’ my life. It was not an easy decision to reach to allow the assessment to take place, and it isn’t something I am jumping for joy about – as a 28 year old woman, I would rather do everything totally independently, but the reality is that at the moment, I have no energy left to have any sort of life, and that is far worse then accepting I might need a little bit of extra help. I know that I look well, but not everything is skin deep.

Every single time I have an appointment like this, I want to run away and hide for the next 20 years. It makes me question my illness – makes me consider the possibility that I have made everything up, even tho I have enough medical evidence to sink a ship. EDS isn’t all about the outside of your body – pain and hyper mobility are a big part, but I have a list as long as my arm of the internal issues my faulty collagen has caused. I wish that professionals would read the info as much as we have to, or at least listen to us when we have read more about it then they have. Judgement held over a patient for knowing about their health conditions seem laughable – surely an informed patient isn’t a bad thing.

 

Too Expensive to Treat

This last week has been testing for me.
After finally having a referral sent to the Royal National Orthopaedic Hospital in Stanmore to see their specialist EDS team, I have come up against yet another wall.

Stanmore is one of the top places in the country for patients with Ehlers Danlos Syndrome. They have a team full of specialists who unusually know about, and manage those with EDS. Their books have been closed for years, and finally the doors have been opened for new patients, all of us in dire need of a team that understand and cater to our needs.

Last year, after 6 months of pushing and a formal complaint, I had a referral sent through to Dr Kaz-Kaz at the request of my cardiologist. Unfortunately as my GP surgery had point blank refused to send the referral, by the time it was sent out they too had books too full to take new patients.

I knew that there was a reason behind my referrals not being sent out, but at the time the GP appeared to be doing this out of complacency rather then anything else.

This week I called up Stanmore to find out the status of my referral when they told me it now has to come from a local rheumatologist rather then the surgery – I knew this could be an issue, but wasn’t quite expecting to hear the reasons behind this.

I called up the surgery and explained my situation. The reaction was a flat out no to a local referral, followed swiftly with an angry “Your costing us a lot of money”.

Yes, thats right – never mind the fact that I am a patient with the same rights for help as any other chronically ill person on their books – this entire continual struggle is fuelled by the surgery having me down as either a patient not worthy of help, or a patient who is too costly to bother with.

This type of comment seems totally unacceptable to me. Regardless of the cost behind treatment and referrals, it is not a comment to fling at a patient who is sick. It is not a comment I have ever heard those with other chronic illnesses mentioning – in fact I know several severely disabled people who have fantastic support from their GPs who put in the care that patient needs regardless – because they NEED it. Yet with in the EDS community it seems this is not an uncommon thing.

This illness that effects our every moment has a hugely detrimental effect on us. It steals away our ability to move about safely, it causes great pain and often leads to a point where we are physically unable to work. It steals our ability to eat normally, to sleep normally, to function socially or function at all. It causes heart problems, urinary problems, swallowing problems and severe fatigue. It causes so many issues that we become depressed and anxious. It can effect our lives so much that we literally can not function, and without treatment these effects are life long.

We may not be dying, but living with EDS that is not being managed intrudes our lives just as much as it may with a terminal illness. Every shred of our being is slowly stripped away – and all of this without the support of the medical profession.

Why is it that this is OK? Why are we the illness that everybody ignores and disbelieves? Money should not come into this when a persons life could be totally turned around with the right input – and with most other chronic illnesses this would indeed be the case.

I am exhausted of fighting the system. I have bitten the bullet in the past and gone privately for help, but unfortunately living on benefits doesn’t leave you with a lot to spare, and Stanmore won’t accept a private referral for their services anyhow. I do not need this continual fight on my hands when I am already sick, in pain and exhausted, yet I have no option but to carry on pushing hard if I want this referral badly enough, and I do. I want the chance to function again, to live again and to work again. I want the opportunity to learn how to self manage effectively and understand how to cope with my illness. I want a life.

This is all very difficult to remember when you are continually written off by those that should be supporting your needs. It is a very damaging way to treat a patient, and really does beg the question; Why am I so unworthy?
I feel lucky that I am mentally stronger then ever before. I can just about cope with this – it is healthily getting turned into anger rather then self hatred, but 2 years ago this would have had me on my knees and added fuel to the fire of depression, anxiety and PTSD. It scares me that there are so many other out there dealing with the same comments who may not cope with them so well.
It is not acceptable.

Another Day, Another Diagnosis

Yesterday I took yet another long journey down to London for another hospital test. This time around, I had the joys of a gastroscopy, which too be honest is not the nicest thing I have ever experienced – 6 hours nil by mouth may be tolerable if you live right by the hospital, but doing this along side a 2.5 hour journey was particularly unpleasant – I never realised how much I love drinking water!

I elected to have sedation as I am not a fan of feeling like I can’t swallow or breath, and judging by the bits I remember (namely choking), I’m pleased I did! They also took a couple of biopsies whilst down there, and again, the idea of knowing someone is taking a small chunk of my digestive tract isn’t something I want to be aware of while I’m unable to run away.

Sitting on the ward with a cannula in my arm felt odd. I don’t often consider myself to be ‘sick’, but each time I’m faced with a hospital test, it suddenly becomes real. I become painfully aware that these tests aren’t given to healthy people, and the number of tests I am in the process of having are certainly above the average for a healthy person of my age. This last year I have had far to many tests. Scans, an MRI, an echo, cardiac stress test, lung function test, 7 day halter monitor, numerous ECGs, tilt table test, a sleep study, 2 weeks wearing an actigraphy monitor, many hospital appointments, too many blood tests to count, and now comes the barrage of tests for my digestive tract and bladder. EDS really doesn’t let up. The worst thing is that I am fully aware that these are by no means the only tests that will come up in the near future as there are still other referrals to be sorted.

With every test comes the chance of yet another diagnosis, and this gastroscopy was not to disappoint. I have had digestive issues for so long that I forget it isn’t normal – recurrent issues with acid reflux, dysphagia, bringing up food (either undigested or partially digested), feeling sick every time I eat, bloating, pain, food intolerances, IBS type symptoms and only managing small amounts of food in one go before feeling like I’m going to throw up. I spent years trying to get help for it, but have repeatedly been told that its ‘probably just IBS’, or other equally unhelpful comments.

It wasn’t until I paid for that private appointment with a POTS specialist that these issues were taken seriously, and I after a long fight with my GP, I finally got a referral to a gastrologist.

With Ehlers Danlos Syndrome and POTS, gastric issues are common. A body thats too stretchy often leads to complications, and POTS is no better. Common issues include dysmotility such as gastroparesis, GORD, hernias and dysphagia, alongside issues with constipation, diarrhea, pain and cramps. To put it bluntly, its a whole bundle of fun.

I hadn’t really put much thought into weather they would find anything wrong during the gastroscopy – I think things have been belittled so often when I have gone for help that I had thought that there was nothing really wrong. If you spend enough time telling a patient that it must just be because they are tired/stressed/nervous then they start to believe it. I genuinely thought that perhaps everything was in my head rather then a real problem, and that these tests would only highlight this.

So after I came too, I headed into the nurses office who went through the exam. To my surprise I have a fair sized sliding hiatus hernia (and some damage done by acid reflux) to add to the list of weird and wonderful conditions caused by my faulty collagen!

The thing that has thrown me off most about this is that according to the nurse, this doesn’t explain a lot of the issues I have with my stomach, and so chances are there will be another unexciting diagnosis right around the corner. I have a couple more tests for these on the horizon, and it is safe to say I am looking forwards to these like a hole in the head.

Sometimes I think that I don’t really want to know what is going wrong anymore. I have a list of diagnosis fit for any 90 year old, and its scary to think just how many more may be added to the list. Ignorance is bliss as they say.

To add another spanner into the works, my blood test results for my thyroid levels have come back wrong for the second time – so no doubt that will be the next thing on the list to figure out.

For someone that looks so well, I certainly have a talent for being broken!

What I Wish I Could Say To My Doctor

Well its been a short while since posting, but as many of you know first hand, the life of a stripy person is never dull.

Over the last few weeks I have come up against the joys of the national health services again – the most tricky of these services seeming to be the good old general practitioners. Yes, thats right, those smiley happy (usually) pointless people that you have to deal with every time your health takes a turn.

In general, I tend to avoid going. Dealing with Ehlers Danlos Syndrome has taught me a lot – how to grin and bare it, how to put on a smile, and most importantly how to ignore the pain in order to find some way to get on with the life you should be having. Unfortunately, the biggest lesson I have learned upon the way is that seeking medical attention is more likely to leave you labeled with unsavoury terminology rather then give you any help in dealing with the symptoms that EDS creates.

If I could openly talk to a GP who I knew would actually absorb the information, there are a few things that I would like to point out to them, and today these have been brought into the forefront of my mind after yet another frustrating and pointless appointment. So – brace yourselves – we may be here for a while!

First and foremost I would like to make it clear that Ehlers Danlos Syndrome is a very real illness. It is not the stuff of legends, nor is it something out of a fairy tale. No. Ehlers Danlos Syndrome is an illness caused by faulty connective tissue. As a doctor, I would like to assume that this is a conceivable idea, and shouldn’t pose too many issues so far as forming some understanding of what may be affected. Most importantly, I would love to be able to assume that you didn’t get your notes mixed up in med school and come away with the idea that having said faulty connective tissue is not possible, and is in fact something only a hypochondriac would say.

Second, I would like to make it clear that we do not tend to frequent your consulting rooms for fun. Believe it or not we are people that do have better things to do with our time. Speaking for myself I can quite safely say that I would much prefer sitting in the pottery studio then waist my life sat in you’re waiting room. We live our lives in a lot of pain, and for the most part we tend to get by and get on with things without needing your continual attention.

So, when we do turn up, PLEASE LISTEN with open ears. Understand that we may turn up with new, worsening or scary symptoms. Listen and try to understand that there are many things that can go wrong when the collagen in your body is faulty, and that these really do need to be kept in mind before making a decision on the cause of things. It may look like a clear cut diagnosis, but unless you bear in mind that there is a pre-existing medical condition underpinning this, then you are likely to be barking up the wrong tree.
More times then not, we leave your office feeling that seeking help is a futile experience, and for me this has led to years of avoiding your offices at all costs. This is continually reenforced every time you refuse to listen, and pretty much every time it turns out that there was indeed cause for concern years later when I finally find someone who makes the time to investigate things properly.

Thirdly, understand that we are not drug seeking. You may look at the list of medication and think it to be unsuitable for a ‘healthy young adult’, but in reality you are not dealing with someone who is the picture of health. You are dealing with people who are in pain, who have stomach issues, urinary issues, depression/anxiety, POTS, joints that sublux or dislocate multiple times a day – to name a few. You are dealing with people that have so many systems in their body affected that it is very difficult to treat in almost any direction you can come at it. Yes, heat patches, stretching and a tense machine may be of use if your muscles are sore, but they really don’t cut the mustard when your hip refuses to pop back in for days on end. Mindfulness again may help you to calm your head and become mentally stronger, but not every symptom of ours can be controlled with this – I should know, I can tell you just how ineffective it is for intense pain from sitting in a service area balling my eyes out after attempting to use it to enable me to drive for another 3 hours that day.
Sometimes medication has to play a role.
I would love to be free from my tablets, but in reality these keep me at a level of being semi able to function. They dull some of the pain, they boost my mood, they slow my heart rate – they even help my stomach acid to stay where it should be rather then coming back up to my mouth. They are far from ideal, but they are often preferable, and even necessary.
So before jumping to conclusion that we are entering your office solely to gain access to your prescription pad, please understand that we would jump at the idea of never needing another tablet ever again if there was such a treatment available.
We are ill people with a very complex illness – we are not addicts.

Fourth (and I can’t believe I am even having to put this into words), you really need to understand that Ehlers Danlos Syndrome is not a ‘phase’ that we are going through. This is a genetic condition – and just like every other genetic condition you treat, that means that it is part of how we’re built. We aren’t going to wake up one morning with a body that suddenly remembers how to fix itself – our blueprints are wrong, and we have already been built. These symptoms aren’t simply going to disappear overnight, and many of them will sadly never disappear at all.
For some people (the luckiest of an unlucky bunch), they may not deteriorate too much – but for many of us, it is a syndrome that can cause long term and severe deterioration in almost every part of the body. Its called deterioration for a reason.
By telling us that we will ‘get better’, or ‘it will pass’, you are simply reenforcing our understanding that you ignore, diminish and don’t listen to us. You are making it crystal clear that our illnesses are not cause for concern, and therefore making it evident that we are unworthy of treatment.
The damage that this can cause is monumental. Not only does it make it harder for us to get treatment, but it can have horrific effects on a patients mental wellbeing.

Lastly be aware that we know our bodies far better then you ever could. After all – we are living in them. If we come to you for help, it is usually because something isn’t right, and isn’t our normal. You’re medical opinion is only useful if you take the time to hear us when we try to talk to you. You may suspect how we are feeling, but unless you actually take the time to talk with us about our symptoms, then how on earth can you make a decision on what is wrong?
We have bodies that suffer with chronic pain – therefore, if we are saying that something feels different, then it is extremely important that you don’t assume this is just what chronic pain feels like. We know what our pain feels like – we live in it day-in-day-out. If there is a new and severe type of pain, this really does need to be looked into just as you would for any other patient. Just because we have pain does not mean we can’t tell if things go wrong.

It is exhausting to be continually pushing for care, and extremely frightening to be ignored when you know that something isn’t right. We are the experts on our body, and more often then not, we often have to become the experts in our own condition. It would be a much easier ride for those with unusual conditions if doctors could accept, learn and work with us, rather then assuming that they know everything. They are only human after all.