Womb of Woes: Part 2.

My second appointment was with a different, younger doctor. Once again I reeled off a list of my symptoms, fully expecting them to be ignored. Therefore, it was something of a surprise when he actually listened to me. When I explained that the inability to have sex, which can be attributed to an entirely separate condition called bilateral dyspareunia, was not what I considered to be a problem, he listened. The focus was shifted onto my other symptoms, & a discussion about diagnosis & treatment was quickly underway, which came to a drastic conclusion. For three months they would use hormones to medically induce the menopause at age 22. If my symptoms stopped, they would undertake a diagnostic laparoscopy, quite literally sticking a camera into my guts to identify the problem.

It took a few weeks to start the treatment as my ordinary doctors were adamant that I was making a fuss over nothing & didn’t need anything quite so invasive (read: expensive). However, I basically annoyed them into submission, & the following three months were the best I had felt since my periods began. The symptoms were eliminated overnight. It was bliss. Even with frequent hot flushes, I was far happier.

All good things must come to an end, & those three heavenly months were soon up. I returned the hospital & saw yet another doctor, this time the head of the department. He was openly disbelieving that anything was wrong, despite the hormones showing such drastic improvements, & tried to dissuade me from undergoing surgery. However, after almost 11 years of fighting to be heard I refused to back down, & my surgery was set to take place at the end of September.

As the surgery approached I became increasingly nervous. You’d have thought that my nerves stemmed from the fear that it would go wrong, or concern for what they would find, but I was actually most afraid of them finding nothing. The leaflets given me all stated, in nicer terms, that if they didn’t find anything via surgery that there was nothing wrong with me, & that I would be discharged. I knew that there was something wrong with me, & had suspected for years that it was endometriosis, but now a definitive answer approached I began to doubt what I knew.

Eventually the day of the surgery arrived. As I was in the ward preparing for the operation, the anaesthetist came to speak to me. With the very briefest of greetings out of the way he immediately asked why I used a wheelchair. I answered, & was immediately asked how I was diagnosed with M.E. I failed to see how this related to the procedure but answered anyway. I was then asked if I did any exercise, & when I answered in the negative I was grilled as to why. He refused to accept that exercising more wouldn’t cure me, & looked down his nose at me in disdain. He added that as a chronic pain patient I could expect to experience more pain than normal upon waking up, but that they would treat that as they saw fit. Clearly, I was just another hypochondriac making a fuss about nothing. Fortunately the head surgeon, who visited me a few minutes later, was much kinder & more sympathetic.

It was approaching 2 pm when I was asked to walk to the operating theatre. They were surprised when I couldn’t just manage the “tiny” stretch of corridor which was at least 150 metres, without any walking aids. However, one of the nurses took the initiative & pushed me there in my wheelchair, saving me from further embarrassment.

The pre-op room was chilly, & as I stood in the thin gown in front of five men & a woman, I suddenly felt very vulnerable. I lay down & was given oxygen via a mask clamped far too tightly onto my face, making it difficult to breath, & a trainee doctor put the cannula in my left hand. He was so nervous about hurting me that he didn’t push the needle in deep enough & it fell back out, so then they had to try again on my right hand. He was mortified but I assured him it was fine; no practice model will ever be able to replace the real thing. As the ceiling tiles started to spin & merge above me, the nurse squeezed my hand.

Bad Medicine.

Back in April the internet was blessed with this little anecdote about a woman who has suffered from migraines since her teenage years. Experience taught her to react to the signs of an oncoming migraine & take her prescribed painkillers before it fully took hold, & providing she did this, she didn’t suffer the symptoms any more. Her boyfriend, having never seen one of these migraines as she always nipped them in the bud, decided that she no longer suffered from migraines. He got it into his head that she had some kind of psychological dependence on her drugs.

One night, when staying over at his place, she felt a migraine coming on. She went for her painkillers but couldn’t find them, so crawled to bed in a vague attempt to sleep it off. It wasn’t until several hours had passed that her boyfriend admitted he’d taken her medication to prove that she no longer had migraines, & only returned it to her after having seen her struggle for several hours. He was, apparently, remorseful.

Words cannot sum up how angry I was after reading this post. I was appalled. Disgusted. Enraged.

Those of us who suffer from invisible chronic illnesses such as migraines, fibromyalgia, or ME, or mental illnesses like depression & anxiety, are constantly being told that we don’t need the medicines prescribed to us by a doctor. In fact, many of us have great difficulty accessing the medication in the first place, so the thought of it being swiped away by some know-it-all with a homeopathic kale enema is beyond terrifying.

Even if it transpired that we didn’t need the medication, removing it completely without warning is straight-up dangerous. Many medicines require a weaning-off period where the dose is gradually reduced. For conditions like asthma & allergies, removal of the medication could easily result in death.

Even those who work in the medical profession themselves seem not to understand the need to nip symptoms in the bud before they escalate. When staying in hospital multiple nurses seemingly objected to the volume of pills I was taking. One temporary prescription I had been given the week before was even removed without my knowledge, let alone consent, & once the pain had escalated beyond control the doctor refused to come to the ward or give me anything to help, claiming without having seen me that I was faking it.

If even inside a hospital, our access to effective medication cannot be depended upon, it is no wonder so many of us guard our medicines so fiercely. They are often kept under lock & key, & it is rare that we let anyone but those who we trust most anywhere near them.

Had Jarred ever tried to wean me off the medication on the pre-tense that I don’t need it, & all I really need is spinach & happy vibes, the relationship would have been destroyed right there & then. Every day I trust him not to meddle with my medication, & after reading this anecdote I realised that I take his reliability for granted.

Unless you are a doctor with knowledge of the patient’s medical history, illness, & prescriptions, you are in no position to make these decisions. Even then you need to listen to the patient, and properly address any concerns they have. No one knows a patient’s illness better than the patient themselves, yet often our needs go ignored.

Think. You wouldn’t take away an ex-smoker’s nicotine patches because you’d never seen them smoke, & you wouldn’t take away a cancer patient’s chemotherapy because it’s essentially a deadly concoction of poisons & therefore you believe it won’t do any good. If you want someone with a chronic illness to trust you, you must prove that you can be trusted.

A Galling Experience.

As a 20 year old woman with a healthy body weight and balanced diet, even the radiographer was surprised when, during an ultrasound scan at the local hospital, my gall bladder took on the appearance of the asteroid field scene in Star Wars Episode 5: The Empire Strikes Back. I had been suffering periods of intense pain just below my diaphragm for about a week making it difficult to breathe, and blood tests revealed that one of my liver enzymes was at almost ten times the concentration it should have been. Anyone with medical knowledge will now be shouting at the screen “gall stones” and they are not incorrect. My gall bladder was crammed full of the blighters, and was so inflamed that they were worried it would burst.

Image description: a diagram showing where the gall bladder is found in the abdomen. The gall bladder is highlighted in green, and rests beneath the liver, above the stomach and small intestine.

24 hours after the ultrasound scan, which I suppose I ought to be grateful found gall stones and not a baby, I was being prepared for emergency surgery. The surgeon visited me on the ward shortly before my operation and she perched on the bed to explain what was wrong with me, and what the procedure was. As a nutritionist with a lecturer who specialised in liver and gall bladder disease, I was well aware that the gall bladder “was a bag of bile that helped digest lipids”, and what exactly was entailed in an emergency laparoscopic cholecystectomy (emergency key-hole gall bladder removal), and took great delight in informing the surgeon as much. Fortunately she saw the funny side of this, as I only realised after I had said this that it probably wasn’t sensible to annoy someone who would shortly be digging around inside my abdomen while I was unconscious.

I was wheeled down to theatre on a rickety trolley and was surprised at how calm I was feeling considering that this was the first time I had ever had surgery. In the preparation room the surgeon asked me how I was feeling, and in response I did perhaps the most British thing anyone has ever done, and said;

“I’m good,” while giving a thumbs up.

I woke up just under two hours later very dazed and confused, particularly because the cannula had moved from my right elbow to my left hand. I was also rather disconcerted to find that I was still in theatre; thankfully the operation had been completed, and they were simply injecting the last lot of morphine prior to transferring me to the recovery room, but it scared me nonetheless. The morphine must have knocked me out again because I woke up about an hour after this in recovery, and after a few minutes a porter came to return me to the ward.

A few hours after coming out of surgery I realised that I needed to pee. There was, however, one small issue. Trying to get to a toilet while attached to a drip and oxygen tube, with a drain hanging out of my right side and still feeling woozy from the anaesthetic, is like trying to ride a bicycle backwards up Mount Everest in a blizzard. I resorted to the use of a commode, which was made far more awkward by the presence of my parents who sat outside the cubicle. Perhaps most embarrassingly of all, I had to get Jarred, who was also visiting me, to pull my kickers down for me, as I was so tangled and confused that it was simply impossible on my own. Fortunately, the effects of the anaesthetic seemed to wear off overnight while I slept, and by the morning I was feeling significantly better.

I was discharged later that afternoon, with some strong pain killers and anti-sickness tablets to help me cope with the after-effects of someone repeatedly prodding me with metal sticks. I was only sad that I wasn’t allowed to keep my gall stones, which I still hold would have made a very interesting artefact to display on my shelf of interesting things. However, my galling experience was far from over…