The story of Lucienne
My advice to anyone who reads my story, is to always be your own health advocate. Never take a Doctors word for something if it doesn’t add up to you, or you continue to feel unwell. We are the ones who truly know our bodies, how we feel, and what works for us. Don’t let a bad mannered person, or marginally educated ‘GP’ or ‘registrar’ make you feel like you are less than them, and like you don’t have a right to discuss your case and make suggestions. Even our supposed ‘specialists’ who let me down for years.
Those who won’t listen to you when you have logical argument, need to wake up to the intelligent digital age we now live in, where scholarly and scientific articles and reputable research papers are readily available to those who wish to read them. Accept the fact that it is entirely possible for a member of the public to medically educate themselves, extensively, should they wish to do so. So much as to surpass the level in rare conditions, that most GP’s ‘brush over’ in their medical training, but may never have seen in real life.
Be heard and respected among your peers, or find someone else who will do so. No matter how long it takes.
I hope someday to do something to help those who aren’t as able to speak up as i was. I wonder how many people we may already have lost, by the time their condition had gone unrecognised by their ‘peers’ for many years.
For 4 years I was told by NHS GP’s & specialists, that I was ‘just unluckily unhealthy’. I was diagnosed with a variety of common & sometimes downright vague illnesses such as ‘non cystic POS’, unexplained hypertension, multiple allergies, ‘spontaneous’ urticaria, muscle & nerve issues, unexplained weight gain, the list goes on.. I was given a barrage of medications to control (or mask) my multiple symptoms, & told to get on with life.. After 3 years of constant medical trips, & worsening symptoms, I was told there was nothing else that could be done to help me.
I didn’t believe that there wasn’t a bigger reason for feeling as chronically awful as i did. I was a 30 year old woman, who took pride in exercise, healthy eating, using natural products etc.. it just didn’t add up.
So i decided to take things into my own hands, & i began studying medicine in my own time, until a few months later, i reached my own diagnosis; of a rare endocrine illness, being cause by a pituitary brain tumour.
I set about finding a GP in London who would listen to me, but each time i found a new one, i would mainly be dismissed after 10 minutes because ‘there wasn’t time’ to listen to my now extensive list of issues. Thus an overview was hard for anyone. Some were just plain rude; A GP in Islington, with a quick glance and a wave of her hand, said (of the now extensive spontaneous bruising on my legs) “its probably just leaky veins’, (wow!) another refused outright to discuss my issues with me until i gave up smoking!..(incredible! Im sure they dont turn away people who have a few glasses of wine a week!)
I gradually became sicker by the week.. all the while being told me that I was simply unlucky, unfit, depressed, or made to feel like a hypochondriac ‘you’re spending too much time on google’.. But i knew it wasn’t true, & so i was sure that something else must be causing all my problems..
It was a pretty awful time to be honest, in the end, my family, my boyfriend, & my closest friends began agreeing with the GP’s and telling me I just needed to accept I was unlucky, or ageing badly, and I should try a lot harder to ‘fix myself’ by eating better & going to the gym.
No one believed me, so what could i do?
Well, i began to study medicine from home, every spare moment i had. Then one day, while i was studying hormones, I began to notice a lot of things making sense, and after some further research, i decided it was likely I had a rare illness called ‘Cushings Disease’.. which I believe affects few in a million people, and furthermore, that it was being caused by tumour in 1 of 3 places.
I continued in my search for a GP, now armed with my own information, but they continued to be mostly time pressured, rude & dismissive of any knowledge i had, because i did not have official medical training.
When things got so bad that i almost couldn’t walk anymore from the damage to muscles & bones (I had spinal insufficiency fractures, a broken arm, dislocating hips, most of which we only discovered long after as scans were never done) i had to quit my job, so i spent all my life savings on my rent while i tried to get help, until I couldn’t afford it anymore. Id lost numerous friendships because i was never well enough to go out, and with no diagnosis people assumed i was just being rude and avoiding them. And my partner left me because he said he couldn’t see any hope left for me. My life was such a mess by now, that i thought frequently about ending it.
But I had one more GP appointment lined up, Id seen 3 GP’s at this particular practice already, who had dismissed me for varying unreasonable comments, but he was apparently an older doctor, who had founded this local practice, so i hoped he might care more about his patients. He was so kind and welcoming when i walked into his office, that i broke down in tears & could barely talk. He patiently listened to me for an hour, he agreed to do bloods & the specific tests which are the first in line for the multiple level of diagnosis to the endocrine condition. A week later he called and asked me to come & see him. ‘Congratulations’ he said. The tests were positive. I was right about the endocrine illness, we just had to find the tumour now!
Strange, feeling relieved about such a serious diagnosis, & the best case scenario now of a pituitary brain tumour as the cause. But i was so overwhelmed that i finally had an answer. This ‘bad news’ in my state, didn’t feel so bad. I was on deaths doorstep anyway. I thought; at least now I’m not just going to die without a fight, at least now i can have a surgery and i might be lucky!
I waited a few months for an MRI brain scan, living now 4 hours outside of London at my mothers house, as i was bankrupt and unable look after myself alone. There were trips to A&E almost weekly, with the most excruciating pains, severe allergic reactions, suspected pulmonary embolisms, pleurisy, vision blackouts, constant dizzy spells, and a list of such strange & alien sensations, which scared the life out of me.
The scan came around eventually, and it was confirmed. I had a large pituitary brain tumour, causing Cushings Disease.
This rare type of tumour i had discovered, starts with subtle symptoms, but silently & gradually destroys the body over a period of time, depending on its aggressiveness. Bones, blood vessels, skin, muscle, vitamin & hormonal homeostasis and more. In my case i now had 100% of the huge list of symptoms. I had surgery just a month later in London Queen Square.
I currently have around 20 specialists now, in 6 London hospitals who are ‘looking after me’. This is because of my neurosurgery care, the damage that the Cushings Disease inflicted, and the destruction of my pituitary gland during surgery. My tumour is in remission, and my Cushings Disease has stopped, but effectively i have swapped these two critical conditions, for a different 12 resulting illnesses, many of which are life threatening, but they at least have medication to control them, and I can learn to understand them. The damage to the pituitary gland has extensive knock on effects, because its the control centre for a multitude of bodily functions, basic things you don’t even think about like moods, energy, appetite, bone & tissue growth/cell repair, sleep, pain, fluids, metabolism, and the list goes on… hence all the new conditions i ‘acquired’ – so I’m a bit like a tamagotchi these days 🙂 .. i have to tell my body to do everything.. by taking different pills & injections throughout the day. its complicated. And i struggle every day with it. But I’m glad to be alive, and healing, however slowly or limited. Many treatments are simply not available in the UK.
I try not to let it affect life too much, some days its easier, others its very hard, depending on pain & symptom levels. The reason i have so many specialists is that even with a dozen diagnosed illnesses being ‘managed’ (rather badly by endocrinologists to this day), there are an outstanding 15+ symptoms which have yet to be attributed to conditions. Doctors have again begun diagnosing non specific/vague issues, & so once again, I’ve gone back into my own medical studies, & come out with some very valid theories, which are based on knock on effects to the neuroendocrine system (using good, reputable world wide sources.) But Its near impossible to get anyone to listen to me, & look at the bigger picture or root causes, even when i have been the initiator for diagnosing at least a handful of my conditions. They perhaps see me as a time consumer, that interferes with their budget? All I’m trying to do is live a full life, and have access to the treatment i need to do that.
I’m still in hospital a few times a week.. for treatment, tests, studies etc.. I wish with all my heart that i could afford to see a private neuroendocrine specialist, who could further test the areas which i think are responsible for outstanding issues, but its simply not within my reach, after so many years of being let down, and its impact financially. Im grateful to the NHS for supporting me in a basic, medicinal context, but equally i am constantly passed around departments, by people who rarely communicate with each other. And so again, a bigger overall picture for them, is hard to grasp.
Thankfully i have 2 or 3 specialists who are more open minded & respectful, so I carry hope for now, that they will yet help me end this horrible journey, while i still have good years of my life to live.
I spend the rest of my time at home with friends or family, living an imposed quieter life. The rest of my time i spend managing my health, which includes managing the various hospital departments administration, learning about my list of conditions so that i can better manage them, researching outstanding issues, chasing up missing appointments. Even just trying to get sense out of appointments, to speak to someone who can actually answer my questions when I’m allowed once every 6 months for my most important specialist.
Isn’t that the point of having an appointment? To update, to ask about concerns & get answers? Yet time and time again I am seen by a registrar who spends 20 minutes asking me about my entire history, including what medications ’they’ have already prescribed me, & what conditions i have. What a waste of everyones time! I’m then told that they haven’t yet read any of the other specialists letters to them, and can’t review them during an appointment because I’m a complex case, and furthermore that they can’t answer any questions about medication or outstanding problems. With a grande finale, that when i come back in 6 months, i can discuss them then. If i specifically request the person who’s name was on this scheduled appointments letter! What sense does that make?
Im reluctantly told they will discuss it with a senior endocrinologist, & will write to me. The letters often don’t arrive, or they arrive shortly before my next appointment, so are useless, since by then my conditions have probably changed again. The whole NHS hospital system is very frustrating and tiresome, especially when energy is a most limited & precious resource, and stress is so physically detrimental, for someone suffering my conditions.
..Im still working on fixing the physical damage of the Cushings.. because the tumour wasn’t caught for so long. Should i do something about this? Should i challenge all the GP’s who prolonged my declining health & left me in this state? I don’t even know how id go about taking on so many people? Im still tired constantly, with insomnia, fibromyalgia, sleep apnea, and traumatic amnesia. As well as losing a great deal of my muscle mass, and thus being unable to stand up or walk unaided for years, i had various spinal insufficiency fractures, fractured ribs, a broken arm, (which took 3 years to heal) But finally I’m in physio rehab to get my core strength back, and I can walk short distances without help anymore.
Maybe one day when Western medicine understands more about this part of the anatomy, i will have a simpler life.. in the meantime i keep on studying medicine & trying to increase my understanding. The local council funds one of the vital medicines (tens of thousands a year) because the NHS won’t /can’t. I’ve also had to fight for treatment of a few others which were not being provided on quite insubstantial grounds (in my opinion). Eventually they were granted. There are more i will fight for as soon as they become available to the British public.
The one really great thing that came out of this, was my medical knowledge. Last year when my oldest friend was going through some health problems also.. and getting nowhere with GP’s or specialists. I listened to her symptoms, and to make a long story shorter, i went to her next specialist appointment with her, & told them i suspected she too had a endocrine illness, but a different one called Acromegaly, being caused (coincidentally) by a tumour in a similar place to mine .. also fatal eventually if the tumour is not removed. The specialist thought i was a bit strange, but after some presenting of my facts, he agreed to do the basic hormone tests. A week later we were told the bloods were positive, so they proceeded to scan, and they found the offending pituitary tumour. She was very fortunate, and because it was caught so early, it hadn’t caused much damage, her surgery had no complications, and now a year on, she is completely cured and living a good life again. With a few ‘battle scars’ to show 🙂