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.

Womb of Woes: Part 1.

As it transpires, my metamorphosis into a loudmouthed social justice warrior began years prior to the meningitis, with little more blood than a small cut (although to me it felt more akin to the elevator scene in The Shining): my first period.

I was 12, & it was a few days before going on holiday with my parents, when I went to the bathroom & discovered blood in my under-crackers. Despite knowing full well what periods were, curtesy of an ever-important sex education, I totally freaked out…because the bleeding had stopped. My long-suffering mother consoled a crying pre-teen, still sat on the toilet, & explained to me that what I had just experienced was called spotting, & was actually fairly normal. It wasn’t until we were in a remote village in North Yorkshire that my period started properly, but fortunately my mum had packed sanitary towels & spare underwear just in case. That was the first & only period I have ever had that could be described as normal.

According to my sex education, periods were supposed to last 3 – 7 days, occurring in regular 28 – 30 day cycles. I could expect to feel some moderate cramping pains & headaches during menstruation, but over-the-counter painkillers & a hot water bottle should make them manageable. I would feel frail & sensitive, & I might get acne.

My periods lasted nearer 10 days, & could be anywhere between 2 weeks & 2 months apart. The bleeding was heavy enough to overflow a large night-time sanitary towel in a couple of hours. I cannot count the number of times I woke up quite literally in a pool of my own blood, it having overflown my towel & bled through my clothes & the bedding. The pain felt like my uterus was trying to eject itself out from between my legs, & didn’t limit itself to during menstruation either. I would get mid-cycle pain which seemed to coincide with ovulation, pre-period, during-period, & after-period pain. It was easier to count the days when I wasn’t in pain than when I was, & with each cycle it got worse & worse & worse.

Eventually, & by eventually I mean after 4 years, I told my doctor. Apparently, what I was experiencing was just puberty, & by the time I was an adult it would have settled down. He did, however, have the decency to prescribe some additional painkillers which I turned out to be allergic to. I went back & no alternative was offered, but I was offered the contraceptive pill as a means of controlling my cycles, which should improve my symptoms as a knock-on effect.

Even on the pill my uterus stubbornly refused to follow the rules. I must have used just about every single iteration of the pill in existence trying to find one that worked, at one point experiencing 2 three-week-long periods in close succession, leaving me with iron deficiency anaemia as a university student. My problems were, however, still an effect of puberty despite being 20 years old, according to the doctor.

After almost 8 years of this, I was beginning to get frustrated. There was a family history of endometriosis, a disease that appears to have some genetic links, & my development & symptoms matched those typical of endometriosis almost exactly. I had mentioned this to multiple doctors but this was always either ignored or was brushed off as the silly anxieties of a young adult.

However, I did have one new symptom that caught the doctor’s attention; now that I was in a long-term relationship, I was trying to have sex & couldn’t, because it felt like I was ripped apart & burnt at the same time. To me this wasn’t much of an issue – there’s more than one way to skin a cat, if you catch my meaning. However, this was the symptom that medics latched onto. The doctor tried to do a physical examination & couldn’t; it was agony. She told me that I absolutely didn’t have endometriosis, but that my inability to have sex, which didn’t particularly bother me, was enough to warrant a referral to gynaecology. A few months later I attended the gynaecology clinic at the hospital.

I went through my list of symptoms with the consultant, who again disregarded all of the ones causing me trouble in favour of the one that wasn’t. She tried to perform a physical examination &, much like my local doctor, couldn’t. However, for the first time ever my symptom wasn’t attributed to puberty; it was all in my head instead. She prescribed something that can loosely be described as a treatment plan, which unsurprisingly didn’t work, & requested I return to clinic in six months. This being the NHS, it was almost a year before I went back.

Doctor Google.

As a nutritionist working in medical research, one of the banes of my existence is Dr Google. “I read an article that said-”, “But I found on the internet that-”, “I saw a video that suggested-”…

In this day & age it goes without saying that you cannot trust everything you read online (except for this blog, obviously), & that the advice of experts is even more valuable among this information overload. So, when I hear medical professionals bad-mouthing those who turn to the internet & self-diagnose, on many levels I agree with them.

However, perhaps we are too quick to judge the people who do this.

While I had an unusually quick diagnosis of Myalgic Encephalomyelitis (& that is not to say that the process is quick or easy even in these cases), I would go on to face other struggles. When I started showing symptoms of depression, complete emotional breakdowns, self-harm, & even a suicide attempt amongst them, I was refused a diagnosis of depression. It was just low mood. I was doing it for attention. Worst of all, these were symptoms of ME, a disease that was clearly all in my head. Apparently, a diagnosis would cause me to express more symptoms via some kind of placebo effect, but without a diagnosis I couldn’t access proper treatment. It was left to spiral further & further out of control until finally I was granted access to medication; medication I still use to this day.

A few years later I was experiencing sickness to the point where I couldn’t even keep water down, & was getting pains so furious it made it hard to breathe. I was given a diagnosis of gastroenteritis, even when the doctor admitted that the symptoms didn’t match this diagnosis, & I was sent on my way. Of course, the problems continued, & it took a junior doctor who hadn’t yet been trained to view all patients as stupid to do extra blood tests, which showed abnormal results. As I went for an ultrasound scan the nurse waxed lyrical about how I didn’t have gall stones, despite the symptoms & the blood test results pointing to exactly that. Surprise or the century; I had gall stones.

When they accidentally left a gall stone behind after removing my gall bladder because they decided not to perform a simple test, I returned with the same symptoms. I was disbelieved on all levels, & a doctor who never met me had my saline drip removed as he was adamant I should just drink more water. Drink more I did, but it only meant I vomited more back up. I was accused of being a fake and almost forced out of hospital still suffering symptoms which I was apparently making up, before finally a radiologist found the problem. A gall stone had been left behind, which I had been telling them was so for almost a week.

Currently I’m trying to get another diagnosis for something I’ve been dealing with for almost 11 years. It runs in the family & not only do I express the symptoms, but I’ve followed the exact developmental patterns it caused in my mother. GP after GP after GP refused to believe me, telling me it was just puberty, even at the age of 22. I finally got a hospital referral where the doctor believes it to be a psychological problem, & they “forgot” to give me another appointment until almost a year later I had had enough. I am still waiting for them to even do the diagnostic test.

We know our bodies best. We know how they normally feel & how they shouldn’t feel. We know when we’ve had enough. I have immense respect for the medical professional but when patients are sent away without answers, support, or even the hope of support in the future, of course they turn to the internet for help. People used to turn to witches or priests in exactly the same capacity.

I will follow the advice of a medical professional, but that presumes that I am given advice to begin with.