I have a genetics consultation tomorrow. Thankfully, it’s over the phone, so I don’t need to drag myself into hospital until next week for my gynaecology appointment – I know, it’s starting to look like I enjoy having people prod at my fanny. I really don’t.
Because I was seen by a rheumatologist with zero interest in hypermobility (his specialism is arthritis) I was diagnosed as having Benign Joint Hypermobility Syndrome. This in itself shows how behind the times this guy is, because for a long time now, the “benign” part of the name has been dropped. He is reluctant to diagnose anyone with hypermobile EDS because there isn’t a blood test for it. In the grand scheme of things, it wouldn’t normally be important as treatment plans are pretty much the same for both conditions.
The issue of being diagnosed with JHS instead of EDS is that when you have other co-morbid conditions that are nothing to do with your joints, their specialists find it hard to see that these things are all related. For example, I saw the head of immunology who prescribed me a bunch of antihistamines to try and combat my mega allergies to dust, grass, lots of animals etc… What they failed to consider is that I have suffered from life-long ear, nose and throat (ENT) problems. The head of immunology also point blank stated that he thinks Mast Cell Activation Disorder (MCAD) is a “load of mumbo jumbo”… Fan-fucking-tastic. Refusal to move with the times. Because of all the antihistamines, my nose and sinuses have dried out completely. My turbinates have reacted by becoming massive and making breathing difficult and sore and it’s making my deviated septum much more problematic. Now I need an operation to reduce my turbinates and put my septum back where it should be. Operations are SUPER fun with no analgesia.
Remember I said that treatment plans for JHS and EDS are the same? That’s working on the basis that the patient can take some kind of pain relief and doesn’t have severe drug intolerances – not uncommon with EDS. It’s also working on the basis that the doctors didn’t dick around for so long that even the most basic physio is impossible due to muscle wastage and chronic pain. A lot of the gentle physio I was given involved lying on my back. Because of my crappy ENT issues and acid reflux, I can’t lie on my back unless I want to choose between not being able to breathe and having a mouthful of stomach acid which is gross and exacerbates my ENT issues.
I’m dreading gynaecology because last time I saw them, they fucked me right up. They did a laparoscopy about a year ago looking for endometriosis. They found nothing, but left a trail of destruction – both physical and mental. You see… I woke up from the operation and felt like I’d been stabbed, I guess… I had! They kept giving me IV pain relief which made me feel really wasted, but didn’t help my pain at all. I woke up in recovery and didn’t manage to sleep for a good 15 hours because of the pain. It turns out that if you have especially hypermobile hips and spine, gynaecological operations under general anaesthetic are going to seriously mess you up. I’ve spoken about it before, but they kept me in overnight as my sister refused to take me home in that much pain. I was left in pain overnight because they have LIMITED PAIN RELIEF IN THE HOSPITAL and didn’t understand that I don’t metabolise opiates, refused help to the toilet, refused to give me a buzzer and had the head of my bed forcefully raised despite me pleading that they didn’t. THIS is why I’m anxious about returning to gynaecology. But a little part of me cannot wait to explain to them that they were cruel, caused me harm and were bullies.
I am going to gynaecology next week for help stabilising my hormones. My estrogen and progesterone levels massively affect my pain. They affect my entire autonomic nervous system too, leaving me with wonky blood sugar, low blood pressure, load of adrenaline, cold sweats, shaking and awful sleep etc. for a good week of every month. My GP is struggling to find a pill to prescribe that doesn’t reign down pain on my existence. I’m not convinced they will see it as attached to my EDS and therefore will not acknowledge the link between my hormones and my laxity/pain – despite the professor in charge of the pain clinic agreeing that there is probably a correlation, despite a lack of research into it. Lack of research should now mean a lack of believing your patients account of their own symptoms.
This is why I need an official EDS diagnosis. I need it on paper so that I can see an EDS specialist who can join up my allergy/gynaecology/gastroenterology/hypermobility problems and can be an overseeing force making sure that every time one specialist “fixes” their area of expertise, they aren’t just causing other problems and meaning I have to wait at the bottom of a waiting list to see another specialist to fix the destruction caused… Every doctor is an expert, but none of them are willing to listen to me – the expert in living in this piece of shit body.
And no one else is looking in my vagina.