Tag: endometriosis

Know It All.

Every so often I encounter a doctor who was simply born for their role; knowledgeable, competent, & with an excellent bedside manner. Admittedly I see that many doctors that at some point it was bound to happen. Anyway, during a recent appointment with such a doctor, he sighed, looked at me, & said;

“I get the feeling you’ve been told there’s nothing we can do for you for most of your life, but again, there really isn’t anything to be done.”

I almost cried.

Not because there was nothing to be done about a particular symptom that, if I’m being honest, doesn’t reduce my quality of life by any significant margin. I almost cried because it was one of the first times a doctor hadn’t tried to soften the blow by pretending to offer some woefully ineffectual “treatment”, but had recognised that, unlike Tom Cruise, I could handle the truth.

I happen to live with multiple conditions that are nigh-on impossible to treat beyond symptom management, & even then the symptoms can only be lessened rather than eliminated altogether. As such, I’ve become very accustomed to hearing doctors desperately clutching at straws to make it seem like they could cure me, when the simple truth was that they couldn’t. I don’t know whether this behaviour stems from a certain arrogance that some doctors have, or whether it is something that is taught during medical school, but it is a rarity to hear a doctor admit that they don’t know.

The truth of the matter is that doctors simply couldn’t hold all of the information about all of the diseases in the world in their heads, even within specialised fields. Sometimes, they’re going to need to look something up, do some further background research, or consult with another professional, just like in any job. Unfortunately, many doctors refuse to admit when they need help, & so they will spin a good yarn instead.

Not knowing something in the vastly complex & ever-expanding field of medicine is not a failure. Admitting it is also not a failure. Giving a patient false hope, or just wasting their time, is. I would much rather not waste my limited energy chasing after an ineffective therapy, than to be told an inconvenient truth.

Of course, being told nothing can be done is still pretty disheartening. It would be nice if one day someone could tell me that something can be done & was also speaking the truth as they said it. I guess what I’m really saying is that I value honesty over pretending that everything is alright, even where my own health is concerned. Being a know-it-all doctor isn’t reassuring, & many chronic illness sufferers can see straight through the façade after a few months.

All of this being said, there is still something to be said for breaking the truth gently, particularly for those new to the delights of chronic illness. Breaking bad news to patients & their loved ones is an unenviable task. It probably wouldn’t be particularly useful to simply say;

“You’re sick as hell & I can’t fix it. Thank you, next.”

For example, the radiologist said “oh dear” as he did an ultrasound to find my gall bladder impersonating a maraca. This wasn’t particularly reassuring, but fortunately having studied gall bladder disease shortly beforehand, I already knew exactly what I was looking at.

However, the doctor who came to visit me on the ward afterwards perched on the end of the bed & explained to me what gall stones were, what the gall bladder’s function was, & how to kill it. It was something of a revision session for me, so I didn’t tell them that I knew what a laparoscopic cholecystectomy was until after having it explained, much to their amusement. However, the bad news that I would need emergency surgery (my gall bladder was extremely inflamed & potentially could have burst, which I think would look something like the chest-burster from Alien) was broken to me in a perfectly calm & composed manner.

In this situation the doctors knew what to do, which probably made it easier to break the bad news to me.  However, I do wish that when discussing incurable chronic illnesses, doctors wouldn’t dodge around the truth so much, but would tell it as it is in a straight-forward manner. Or maybe I’m just too Yorkshire for my own good.

A Game of Risk.

Very early on in my degree I was introduced to the concept of risk-benefit balance. For example, is using preservatives to reduce food waste worth the potential risk to health? Given that food spoilage & poisoning causes substantially more damage than the rigorously tested preservatives used on food, which have been shown countless times to have minimal, if any, impact on health, it is definitely worth the risk. Quite simply, if the benefit outweighs the risk substantially, it’s probably worth doing. If the risk equals or outweighs the benefit, it won’t be done. Of course, quite how you quantify risks & benefits is somewhat subjective, but there are standardised methods of getting an estimate.

This concept doesn’t just apply to food, but has applications in almost every field, including medicine. My work in clinical trials revolves almost entirely around this concept; we introduce new medicines & therapies to patients, monitor the risks, compare that with their efficacy, & this research is used to direct the future of healthcare. There is also an element of health economics, & the inception-style study of studies & their impact on healthcare, but it always comes down to the risks & benefits.

In people with reduced mobility, using the contraceptive pill could potentially result in deep vein thrombosis, where cholesterol hardened into a sort of scab dislodges from its original place, & becomes wedged in one of the larger blood vessels deep below the skin. It can cause all sorts of issues such as a cerebrovascular events (strokes), myocardial infarctions (heart attacks), or most commonly, pulmonary thrombosis (where the clot obstructs the passage of blood through the lungs, meaning oxygen cannot enter the bloodstream & carbon dioxide is not expelled). Cardiovascular disease is the leading cause of death in many western populations if not globally, so obviously it is something to take very seriously. That’s not even to mention the potential links to breast cancer, something which runs in my family.

I was using the contraceptive pill long before I started having sex; in fact, even once I was having sex it’s primary use was not as a contraceptive. I used it to try & control the irregularity, heaviness, & extreme pain menstruation has caused me since starting a decade ago. Nosebleeds, sickness, acne outbreaks, bloating, intestinal pains, constipation, & headaches plagued me with each period, as did ovulatory pains mid-cycle. At first I was told it was normal. Then it was because of puberty. Then it was because of my other chronic illnesses. Then it was because of painful spasming of the vaginal muscles. Then they finally decided they would quite literally stick a camera in my guts to see what was really wrong. At the time of writing I still don’t know how that goes, or what the outcome is. Hopefully I survive.

My point is, the contraceptive pill helped me manage all of those symptoms, until one day a doctor panicked about the risk of deep vein thrombosis & took it away. The alternatives offered I had previously tried & found to be ineffective, or I simply couldn’t manage such as the coil which is painful in healthy women, let alone this rolling bag of chronic illnesses. Eventually, I was left without an alternative, & I returned straight back to the misery I had been protected from since my early teens. On top of my other illnesses, I could barely stand upright without blacking out.

I fully appreciate the risks deep vein thrombosis present, but I am already sick & in pain. I cannot fathom why the chance that something bad might happen in the future outweighs the benefits I will definitely receive from accessing treatment now. You could argue that a heart attack is far more likely to kill me than what we suspect is endometriosis, but there are also things within my control that I can do to reduce the risk & damage inflicted by a heart attack, unlike whatever this is. I literally have a degree in nutrition & diet is a major contributor; I am trained to handle this exact situation.

The contraceptive pill is just one example of this ridiculous situation, where current symptoms are denied treatment in favour of trying to prevent a future possibility. I have no qualms about doctors informing me of the risks & wanting to avoid them if possible, but no risk can outweigh the benefit of certainty. Certainty that my current symptoms will be manageable. Certainty that I will be able to stand up without passing out. Certainty that I don’t have to spend my days curled up on the bathroom floor, with only a hot water bottle & paracetamol to combat the pains, which feel like someone has put a vice around my guts & is slowly tightening it. Certainty that my quality of life right now will give me a future, whatever that future looks like.

I am not ignoring the risks; I accept the risks. I understand. But surely it should be up to the discretion of the subject that, once all the information has been provided in an accessible way, I get to make up my own mind about how I live? I was happier living with the Sword of Damocles’ dangling over my head than I am feeling like it’s already stabbed me, & if they’re my only options, then I’ve made my choice.

One More Time.

It’s been quite a year.

Stood in front of the armoured War Elephant in the Royal Armouries in Leeds at our wedding.

In the middle of January, mere weeks after getting married, my husband & I began the search for a new home. Our current apartment was falling into disrepair at an alarming rate thanks to a disinterested landlord & unhelpful letting agent. It was almost impossible to keep warm, & we were both heartily sick of sticking our hands down the back of the toilet to reset the cistern after every flush. Almost immediately on our search we found a block of smart-looking apartments on the edge of the city centre, nestled behind the shops & arena. We booked to view an apartment which was cancelled at the last second, so booked to view another similar apartment, & despite making an appointment to pay the deposit were told that someone had snapped that one up at the last second too. Although it didn’t feel like it at the time, this was a good thing.

I viewed the third apartment alone as I had more lenient annual leave arrangements than Jarred. The letting agent surprised me with the higher rent, but once inside the apartment it was clear why. It was more spacious, easily able to accommodate the wheelchair in all rooms, & had large windows overlooking the little garden outside. Of course, the office of the letting agent was inaccessible, so much to their displeasure we were forced to do the paperwork in the apartment block’s reception. The agent bumped up the rent even more much to my displeasure, & repeatedly reminded me how much easier it would be if this could be done in the office. There were queries over their guarantor policy & my ID, & the agent added an extra month’s rent to the tenancy agreement, but eventually after a stressful couple of days, it was all finalised.

Now that we knew we would have a home once our current tenancy arrangement ended, we could move onto more pleasant things; arranging the honeymoon. We planned a week in London around a wrestling show, of all things; after all, Jarred did propose at such a show. At the start of March we hopped on a coach down to London, staying in a hotel near King’s Cross in the north of the city, & enjoying a range of activities including the London Eye & a matinee show of Phantom of the Opera (Part 1 & Part 2).

My husband & I high above the London Skyline on the wheel, drinking champagne.
Nelson perched atop his column in Trafalgar square.

All too soon we were travelling North again, & a couple of days & several loads of washing later, I returned to work. I was approaching six months in my job by this point, & my probationary period was up for review. I was disheartened to learn that my probation would be extended for a further three months, although my line manager was as kind & supportive as ever. However, it did seem that my difficulties in the job mainly stemmed from the fact that it was a step above entry-level, & I essentially had to learn everything the entry-level role should have taught me, & then learn my actual role on top of that.

After the Easter break came a succession of birthdays; a close friend, my dad, my father-in-law, my brother-in-law, & then me. A couple of those birthdays were milestone one’s, although I think if I disclosed which milestones I would be disowned, & so my brother-in-law came up on a bank holiday weekend to stay with us. I had booked the rest of the week off work, & I spent most of that playing my birthday present; the much-underrated Rage 2.

In amongst all of the birthdays was a trip to the gynaecology department at the local hospital (yay?). I wrote about that saga rather recently (Part 1, Part 2, & Part 3) so won’t go into the details here, but I was pleasantly surprised at how well that appointment went. It was after that appointment that my journey towards getting an answer about my gynaecological issues truly began.

June was a stressful month as we prepared to move house, & I also undertook a trip across the Pennines to Manchester, for an ironically inaccessible conference on disability. The end result was essentially having to pack the entire apartment on my own in a weekend, which also turned out to be one of the hottest weekends of the summer. To make matters more awkward, our landlord was not too happy that I had disclosed the extremely long list of broken things to the letting agents they were working with, & kept trying to charge us for things that had been in a sorry state long before we moved in two years before, but after obtaining some legal advice they were forced to back down. Still, July 1st, the day we got the keys for our new apartment, could not come fast enough.

Inside the conference centre, looking up the staircase towards a glass ceiling.
Inside Manchester Piccadilly train station about to head home.

The day we moved was bright & sunny, filling the apartment with natural light as we unpacked the essentials. Both of us had booked the week off work, & with the help of my bridesmaid & her partner, we were settled within that week. We were all pleasantly surprised at just how smoothly everything had gone!

Looking up at our new home; a red-brick building styled to look like a large house, nestled behind some trees.

The day we moved house was also the day I passed my probation at work, earning my place working alongside a characterful team of like-minded individuals. I’m not sure I had ever felt so positive & confident before; I had a gorgeous home I could be proud of, a brilliant job I could be proud of, & a gorgeous husband I could be proud of (for the most part, anyway). For about six weeks I was rolling on cloud number nine, even going so far as getting a new tattoo, & then I had to return to the hospital.

The black & white skull & rose, with 5 red ladybirds crawling over it, on my right shoulder.

This appointment was harder. The temporary treatment I had been on had already worn off, & I had to work hard to convince the doctor that the best way forward for me at this point was diagnostic surgery. Fortunately, the man saw reason once I had explained the situation, & I was told to expect a letter in the post. Sure enough, a few days later I had confirmation; on 24th September I would undergo a diagnostic laparoscopy.

I’m lucky to have an understanding & considerate employer, who allowed me to take the necessary time off work for the surgery & recovery without needing to use any of my annual leave. As the date got closer I got increasingly more nervous, not necessarily because of what they would find, but what they wouldn’t. Above all else I needed the validation that my symptoms were not all in my head, as had been suggested countless times before.

Sat up in my hospital bed post-surgery, with a disconnected drip still stuck in my hand.

Unsurprisingly the surgery did find something, that something being the endometriosis I had been telling doctors I had for years. The next two weeks post-operation were miserable. I was predominantly alone & housebound, in a lot of pain & still without treatment despite now having a diagnosis. My stitches, which as it transpired had been applied incorrectly, became infected. Then my GP was less than helpful, but fortunately I had managed to wrangle a telephone appointment with the gynaecologist for the end of November.

In mid-October I returned to work, now having been employed there for over a year. Given the large pile of paperwork waiting for me, & the even larger bouquet of flowers, it would appear I had been missed. It took a couple of weeks, but by the start of November, the majority of the backlog of work had been cleared. My line manager also had a new daughter.

A large bouquet of pink, white & purple flowers, of many varieties.

As our first wedding anniversary approached, Jarred & I decided to book a mini-break in York for late November. York is always spectacular as Christmas approaches, & considering the nature of the historical buildings littered throughout the city centre, is surprisingly accessible. You can read about my trip here: Part 1 & Part 2.

Looking up at one of the famous towers of York Minster.
Looking west over the River Ouse, with the trees silhouetted against the sunset.

Upon my return to Leeds I had my telephone appointment with the gynaecologist. Fortunately, he was significantly more supportive than my GP, & proposed that I go back on the only treatment that had proved effective without miserable side effects in the past. Unfortunately, that did involve being injected in the stomach every few months, but it meant relief for the foreseeable future.

Now we have Christmas in our new apartment to look forward to, although of course when this is published, both Christmas & our first wedding anniversary will have passed us by.

As for the coming year, we know we have a home for well into 2021, so can relax on that front. My career in medical research could take several paths, & I look forward to finding where I end up. I don’t tend to plan as something will always come along to scupper plans; plans cannot be scuppered if they do not exist. I know I say this almost every year, but to have a less eventful year would be a pleasant relief; we will just have to wait & see.

Womb of Woes: Part 3.

The clock had skipped forward almost two hours when I came to in a bed, oxygen mask on, with a radio playing quietly in the corner. For the first few minutes I could barely keep my eyes open, but eventually the fog lifted. When it did I wished it hadn’t, because I think that was when I discovered what being impaled felt like.

After a bit I was returned to the ward, & my oxygen mask was switched for a tube which was a lot more comfortable. I could barely manage sips of water, let alone the hot drink & food I was offered. By now I could feel multiple wounds which told me that they had found something; the surgeon had explained I would only have one incision for the camera unless they found something that required surgical intervention.

I think it was about 6 pm when one of the other surgeons came to my bed. Without bothering to close my curtains she loudly & bluntly exclaimed that I had endometriosis, & that the lining of my uterus had wrapped itself around my ovaries & had had to be cauterised. Treatment would only be offered when I returned to the clinic several months later, & I was good to go despite being unable to eat, drink, or use the bathroom properly. I would also not be getting any pain relief.

Fortunately, the head nurse on my ward seemed to have experience at handling M.E. after a general anaesthetic, & basically refused to let me go home until the morning. That evening, after my husband had gone home after a long day for us both, I sat in bed chatting to the other women staying overnight, & managed to eat & drink a little. After something of a concerted effort, I even managed to use the bathroom.

In the morning I was given breakfast & sent on my way, with documents explaining why I would be taking 2 weeks off work. We took a taxi home & almost immediately I returned to bed. For the next three days I could only manage to stay awake for a couple of hours at a time, & didn’t leave the bedroom except to use the bathroom. The most exciting thing I did was take a shower: I removed my dressings in the shower to discover that I would never be able to wear a crop top again with confidence; thanks to my previous surgery my midriff is covered in scars, & my belly button is warped.

By the weekend I was able to stay awake all day, & even made it into the lounge where I played video games & watched TV. It was over a week until I had the strength to get dressed & leave the house, & even then it was for less than an hour. By this point I was desperate to keep my brain active to avoid becoming even more depressed, as I was now able to fully process the emotional impact of my situation.

For 11 years I had been disbelieved & left in pain. For almost a decade of that it had been exacerbating the M.E, working in conjunction with it to obliterate my health. After 11 years I finally had an answer that shouldn’t have been anywhere near as difficult to get, & even though I now had that answer, I had been sent home with no pain relief & no treatment. Even now, with a confirmed medical diagnosis that cannot be disputed, I am left to struggle on my own.

We are supposed to be grateful for the NHS, because access to health care is considered a privilege & not a human right, & in comparison to most Americans we’re lucky. While this is true I think I can be excused in finding it difficult to be grateful for a system that has once again left me to suffer for years, so concerned on cutting costs that the wellbeing of patients is disregarded in favour of excuses. If I could afford private health care I wouldn’t even hesitate. I fail to understand why not having healthcare is considered the baseline & having healthcare is the privilege, when healthcare should be a right & failing to provide that should be a violation of that right. Quite simply I wouldn’t wish my experience on anyone, & everyone should have the right to not constantly be in pain.

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.