Why does a disease which causes pain, infertility, and which affects around 10 per cent of UK women take up to ten years to diagnose? – Jenny Johnston ( Independent, Feb 2015)
Diagnosis. According to the Oxford Dictionary this is – the identification of the nature of an illness or other problem by examination of the symptoms.
In my opinion, a diagnosis of any form is a great thing. In my opinion again, a diagnosis offers a form of reassurance for the patient that- the doctors and/or relevant healthcare professionals have a good understanding of what is going on with the patient. As a result, the patient is given a prognosis that hopefully involves effective treatment or a cure that significantly improves the patients quality of life.
So how did my diagnosis affect my quality of life?
Apart from the really heavy, really painful and irregular periods which I attributed to the Progestrone based Implant contraceptive I was on, it took me a while to realise that something was not right. I also began to dramatically lose weight. I went down from a UK Size 12 to a UK Size 6 within about 10 months. I then started to experience IBS (Irritable Bowel Syndrome) like symptoms during my menstrual cycle (erratic bowel movement changes, bloating & stomach cramps). During my menstrual cycle, I would also experience dull aching abdominal pains that radiated down to my leg, coupled with several bouts of nausea, and dizziness. After several visits to the GP, I was diagnosed with IBS and put on a repeat prescription for Buscopan.
On two occassions in early 2012, I was admitted into hospital on a nil-by-mouth kind of scenario because they thought my appendix needed removing. On both occasions, blood tests revealed that my CA 125 levels (http://labtestsonline.org.uk/understanding/analytes/ca125/tab/sample/) were slightly elevated. On both occasions, I was given an ultrasound scan to investigate. The first ultrasound carried out in February revealed a functional cyst on my right ovary measuring 54 x 40 x 34 mm. I was sent home on painkilers until it cleared on it’s own. About a month and a half after that, the second ultrasoundscan revealed two functional cysts on my left ovary, one haemorrhagic cyst on the right ovary and free fluid in my peritoneal cavity. Again, I was sent home on painkillers.
Following those two episodes, I became extremely concerned for my health. Surprisingly enough though, visits to the GP and A&E after that proved fruitless. Every doctor I saw was convinced I had IBS and absolutely refused to link the two symptoms together. I remember desperately asking them for referrals. One doctor refused on the basis that I was a Biological Sciences student at university and that I also couldn’t suggest any condition that fit my symptoms. One female GP went as far as saying that women do experience heavy and painful periods every month and that I was no different.
I felt stupid, I started to believe that maybe I was overracting and being somewhat of a hyperchondriac drama queen, an attention seeker! My life completely changed in so many ways at that point. I was unable to attend my lectures because the pain became crippling. And when I did attend lectures, I was always in a painkiller catatonic induced state. I was forced to cancel appointments with friends, with my then boyfriend. I became so isolated from everyone, from myself. And when I did summon the energy to go out anywhere, the pain rendered me into serious B*tch mode. Things became really unbearable when I couldn’t enjoy sex because that became excrutiating. (Oddly enough, that has a name for it too- Dyspareunia). Looking back now, I realise that I quite possibly suffered from mild depression because that whole year and a half is still a blur to me. I remember feeling very hopeless, worthless, fatigued, I couldn’t concentrate on anything at all, insomnia, no appetite, constant persistant sad and empty feelings.
I finally decided that enough was enough. I realised that I knew my body better than anyone else did and I decided that I would not leave that GP surgery without MY referral letter. Fortunately for me, my father’s private healthcare plan covered me up and until the age of 21. At that point, I had lost all and utter complete faith in the NHS, their services and staff .I was desperate to have nothing to do with them at all (HA! the irony- considering that I currently work within a private pathology company for the NHS)
So I charged in there, ready to go all “Diary of a Mad Black Woman” on the doctor. When I got there, I demanded a referral letter to a private Gynaecologist and without a fight, the GP begrudgingly wrote me a letter and that pretty much set the ball rolling on getting diagnosed. Within a week, I had been seen by an Gynaecologist who specialises in Endometriosis. And by the following week, I was booked in and ready for the diagnostic laparoscopy.
After I had been diagnosied with Endometriosis (adhesions excised via diathermy from my Pouch of Douglas), I found that I left the facility with more questions about what was wrong with me than when I got there. Like…What exactly is ‘Endometriosis’? Is it cancerous? Is it genetic? Is it contagious? What causes it? Why was I misdiagnosed with IBS by every other doctor I saw? Will it come back? How can I manage the symptoms if it comes back?
My follow up consultation with the Consultant (which cost about £150 a pop by the way), involved seeing pictures of 50 shades of pink anatomy taken during surgery. He told me that all was well, I would have no infertitility issues and that I should probably go on the Mirena Coil as a choice of contraception. And thus my journey of discovery, research and internt trawling for information began.
After my diagnosis, I found that my quality of life did improve to some extent.I am much happier in myself. I am attempting to eat right and avoid foods that can and have been known to trigger endo flare ups. I exercise regularly, meditate and pray daily. I am making more of an effort not to isolate myself and instead talk more about my condition with pretty much everyone, especially those closest and around me. I found so much strength and empowerment from realising and accepting that, I can only do the bare minimum in regards to how I feel physically especially during a flare up. I am however able to do a lot more mentally & emotionally to just about grin and bear life with Endometriosis.
Getting diagnosed is one thing. Living with Endometriosis is and has been extremely hard to figure out, accept and manage. Numerous internet trawls and literature & blog reading still continues to fall short of my expectations. Despite 174 million women affected by this worldwide, I have struggled to find an abundance of significant information on things like ‘diets’, ’emotional and physical wellbeing’, effective pain management, work related rights from when it comes to Endometriosis etc.
I would love to hear and talk to all who have been or think you are being affected by Endometriosis about your symptoms, how long it took you to get diagnosed & how you manage your condition.