Chapter 6 – Diagnosis

Several weeks passed. I was in excruciating pain.  But before too long another letter dropped onto my door matt.   My results were in. It was time to find out the damage.

Mother Dearest took me to the appointment.  Her – still hopeful. Me – not so much.  But at least I would know soon and that gave me comfort.

The Macmillan nurse called me through. As soon as I saw Gorgeous George’s face I knew what the results were.  It was endometrial endometrioid adenocarcinoma (A super fancy name for a specific form of womb cancer), and the MRI had revealed it had penetrated over 50% of the muscle in my uterus.  There was a high chance this could spread to my lymph nodes if it hadn’t already.  A hysterectomy was my only option.  I took a deep breath, this is what I was prepared for.  He asked me how I felt and I said unsurprised. He told me he broke protocol and booked me in for surgery immediately after my last procedure.  My radical hysterectomy was booked for two days time.  I said my goodbyes and went into preparation mode.

Mother dearest was called into the tiny room with the Macmillan nurse.  The nurse relayed the information to her and I held her hand tightly.  My pre-op assessment was completed and I was sent downstairs to get my bloods checked.

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Almost three fucking hours I was waiting due to the new system.  And it this time both my heart and head raced.  Now I have had issues with my gynaecological health for years.  This has had more of an impact on my life than you ever could imagine, and I’m not demure about this in the slightest.  So I’ll give you a little more insight:

So lets talk a little about polycystic ovary syndrome.

  • Up to 20% of women and girls worldwide have PCOS, a complex hormonal disorder for which there is no cure.
  • While the name may be deceiving, PCOS is not a a specific gynaecological issue – it is an endocrine disorder affecting many systems in the body.
  • If left untreated PCOS can be a precursor to many life threatening conditions including type II diabetes, hypertension, cardiovascular disease, stroke and kidney problems. This means PCOS contributes to some of the leading causes of death and disability in women today.
  • What PCOS is, and what it does to women who have it, is complicated to explain as symptoms and severity of the syndrome can vary from person to person. Some of the classic symptoms are drastic weight gain, hair loss, depression, fatigue, thyroid problems, high cholesterol, panic attacks, headaches, dizzy spells, poor memory or muddled mind, sleeping disorders, constant thirst, extreme cravings, insulin resistance, cystic acne, cystic ovaries, menstrual cycles without ovulation, irregular cycles, severe mood swings, high testosterone levels, infertility problems, excess facial and body hair, not to mention a seven times greater risk than an average woman for four major health concerns affecting women  including heart disease, diabetes, endometrial (womb) cancer and strokes.

I mean, you don’t need to be particularly imaginative to see how this would have a dramatic impact on your life, right? The important thing to remember here is how many women who suffer with this, and that there is no cure.  The symptoms can be managed providing you find yourself a medical professional who is well versed (Most are not and incorrect information is very common), but most women suffer in silence for years.

Now lets talk about endometriosis

  • Pronounced en- doh – mee – tree – oh – sis –  is the name given to the condition where cells like the ones in the lining of the womb are found elsewhere in the body.  Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
  • It is a chronic and debilitating condition that causes painful or heavy periods.
  • It may also lead to infertility, fatigue and bowel and bladder problems.
  • Around 1.5 million women in the UK are currently living with the condition.
  • The common impacts to those with the conditions are – chronic pain, fatigue, lack of energy, depression, isolation, problems with a couple’s sex life, relationships, an inability to conceive, difficulty in fulfilling work and social commitments.
  • The only definitive way to diagnose endometriosis is by a laparoscopy – an operation in which a camera (a laparoscope) is inserted into the pelvis via a small cut near the navel.
  • Recent research shows that there is now an average of 7.5 years between women first seeing a doctor about their symptoms and receiving a firm diagnosis.

 

Am I angry that I have suffered with chronic conditions which have considerably reduced my quality of life due to medical professionals not being effectively trained in these areas which delayed treatments and diagnosis?  Of course.  Do I blame the medical professionals?  Not at all.  It tears me apart that so many others are suffering like I did though, this is a much larger issue.

Am I frustrated that I have spent seventeen years, often in debilitating in pain, with all of my symptoms being ignored – largely being told that I don’t bleed as much as I think I do, I should just be less fat and have a baby? Abso-fucking-lutely.  Especially when weight gain is so often a symptom of PCOS.  As is insulin resistance.  And increasing exercise is all very well but bleeding constantly for over a hundred days at a time, not being able to sleep for more than an hour at a time, having broken skin on your legs from constantly having the wipe away the blood, constant fatigue, crippling pain and that isn’t even addressing the impact all of this has on your mental health including the fact there were days I literally could not get myself out of bed.  So with this is mind, it’ difficult to just pop to the gym and change your sanitary protection every 15 minutes to prevent public humiliation.  Also, what a fucking surreal concept – try having children to stop being in pain.  And just to clarify, I was told to “just have a baby” on five separate occasions by five different doctors. It’s weird that the constant bleeding, crippling pain and mental health issues put me off to be honest.

I have literally lost count of how many doctors offices have I attended and bled all over to try and get help. But we are looking at more than twenty.

And yet when I am told the source of all of my pain for almost twenty years would be removed, I am expected to be devastated.

I was finally called in.  The tiny Irish nurse introduced herself and explained she was there to take my blood samples. I assumed the position and took the deepest of breaths.  A few moments later I heard “Thank Jesus that worked first time!  I said a prayer and everything.  One look at your face and I knew you’ve had an awful day of news and have bad veins – I have them myself.” She was wonderful and I felt so fortunate to have been seen by her.

I left the hospital knowing that I would need to return in 18 hours.  My bag was packed already.  I always knew it would end up this way.

I have cancer.  I could die during this surgery.  This hospital might be the last place I ever walk into.

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