Endometriosis: Sarah’s Story

Some days my pain is so excruciating that it takes every little last bit of willpower I have to drag myself out of my bed and face the world. Those days used to be a few out of every month, now those days are every day.  I know the cause of my pain.  I know what the solution is.  I know when that solution is coming and it is only a few weeks away, but time seems to somehow dilate and those few weeks seem as far away as the stars and planets that I stare at on those few cloudless nights we have in the grim north!

So here is my story.  Long and tedious it may be, but it is my story nonetheless and it is time that I put it all down in one place.

I have just turned 40.  I feel it.  In fact, add another 20 years on…that’s how I think I feel. This state of mind is not normal for me but it has been the status quo for over 2 years.

You see I, like many other women, have a condition called endometriosis.  It is often a silent condition that goes unnoticed and can often cause very few symptoms.  It is frequently misdiagnosed and from my research, it can take many years for a firm diagnosis to be achieved and treatment to be secured.  In the meantime, that long wait can cause untold damage, not only physically, as in my case, but mentally and emotionally too.

Rewind 21 years.  I was at university.  I was not a social butterfly, not confident as such.  I certainly didn’t get overly involved in the social scene at uni.  I got on with my work, attended my lectures, occasionally went to the Thursday night ‘disco’, but really, kept to a small group of friends who I met.  Why?

Every few weeks I would be plagued with horrific period pains.  Pains that rendered me speechless. Doubled over.  Often fainting.  It was embarrassing and terrifying and I really didn’t want to be around people when that happened.

I had investigative surgery – a laparoscopy and hysteroscopy and nothing was found.  The results were duly sent to my GP who tactfully advised me that with most ‘women’s problems’ they were resolved with pregnancy and maybe I should consider having a child.  REALLY?  19 years old, 1 year into university, a career as a teacher planned out.  Quality advice there.

I learned to live with it.  Hiding usually worked.  But at least back then it was limited to just a few days a month.

I got older, I got married, I had my one and only child when I was 27.

Prior to my pregancy and for a few years afterwards, I used the contraceptive pill.  My pain, bouts of fainting and such like disappeared as such – certainly they were not a monthly focus for me and so there was a significant chunk of time where I did not think of it.  I thought of other things instead…particularly the dawning realisation that my marriage was an epic disaster (but that is another story).

My marriage ended.  I met someone new.  Life was sweet.

I came off the pill aged 35.  February 2008.

In October 2008 I went to see my GP – I had trouble getting comfortable at night.  If I slept on my left side I felt like something was pressing on the inside of my pelvis, if I rolled onto the right, I had a horrible dragging sensation.  I needed to go to the toilet with the frequency of an older man with a prostate problem.  The pain was back, but not the fainting.  Still, it was focused to a few days, each month.

I was sent for an abdominal ultrasound, which showed nothing.  I know now that for my condition, it wouldn’t have showed anything.  Nothing there, nothing is up with you.  Pretty much.  I was told it was probably IBS and to watch my diet.

Time passed, a proposal came, a wedding was planned.  We said our vows in April 2010 and neither of us expected that “In sickness and in health” would come to pass quite so quickly.

A few months later I was recalled following a smear test.  Abnormal cells. Colposcopy.  That was pleasant.

Then, less than a year from our wedding, I returned again to my GP – I was exhausted, constantly.  Hot flushes some nights.  Frequent sleep disturbances and a persistent nagging pain in my pelvis that caused me to be fidgety, uncomfortable and distressed for much of my time.  The pulling/pressure sensation was back with avengeance and MY GOD – the PMT and subsequent few days were just horrific.

Early menopause I was told.

Menopause doesn’t cause pain.  No matter.  A symptomatic approach is taken to diagnosis I was told. My symptoms indicated menopause.

Some days the pelvic pain would change, become acute and it really started to impinge on my daily life.  I tried to manage. It’s difficult when you are a teacher.  Doubling over in pain and howling is not considered good form in the classroom – not if you are the adult anyway!

I returned to the GP – saw someone different – and was referred again in October 2011 for another ultrasound.

Yep, you guessed it – nothing there.  Aside from the fact that they didn’t do a pelvic but did an abdominal, the ultrasound was not going to show my condition (that I didn’t yet know I had).

At my wits end, my GP decided to refer me to a consultant gynae at my local hospital.  However, I had to wait and go through 8 weeks of pure hell before my GP was allowed to make the referral.  Peer review within the surgery meant I would not be referred unless I first consented to taking the mini pill for 3 months.

No choice.

After 10 days, I started bleeding.  I bled for 42 days straight.  I was exhausted, suffering from extreme mood swings and what I now understand was depression.  I once considered that maybe it would be better if I wasn’t here.  Just once.  THAT was enough and I stopped taking them and demanded my referral.  I got it.

I thought an end was in sight.  My family and friends rallied and supported and we all looked forward to finally knowing, having an answer and therefore being able to do something about it.

I attended the appointment.  The consultant was 30 minutes late for the first appointment of the day – mine.  She rushed in, didn’t listen, made a miraculous diagnosis without so much as an examination, told me that she was going to adopt a particular cause of action – a treatment – and that we would have to wait at least 6 weeks for that to take place, and another 6 months for it to settle and see if it resolved things.  It did not seem to matter to her that what she was prescribing as (in her words) “a miracle cure” was not for the symptoms that she was PRESUMING but that I did not have.  This rush job was topped off with a cervical biopsy which was agony and frankly unnecessary, having only just had my annual smear test two months earlier.  I was dispatched for blood tests and left feeling shaken.  No mention of diagnostic surgery. Just treatment. For something that manifested itself differently than the symptoms I had.

That same day, when I had regained my composure, I contacted another consultant gynae and arranged for a private appointment a few days later.  I needed a second opinion.

Thank goodness I did.

I explained all of this.  I was told that the only way to really assess what was happening was laparoscopy. I felt better for knowing that my distrust and anger at the treatment in the previous week was based on my own good understanding, not just a reaction for the sake of it.  The consultant contacted my GP, she referred me to him and I was back in the system.

The answer came in October 2012.  The cause of my pain is scar tissue. Not just little bits, but effectively the equivalent of an extra womb in my pelvic area.  My left ovary and fallopian tube are encased in the scar tissue, which has also encroached into other areas and has headed towards my left ureter.  That, combined with extensive endometriosis, means that my pain is unsurprising and, to my relief, very very real.

The sadness is that if all of this had been spotted somewhere earlier along the way, if it had not been masked for many years by the contraceptive pill, if I had been referred sooner, seen a different consultant on a different day, then I might not now be facing the daunting prospect of a full hysterectomy, along with the removal of the ovary and tube that is now dead and potentially the other one if it isn’t healthy.  I wouldn’t be waking in the night in a cold sweat dreaming about all of the terrible things that could go wrong.  I wouldn’t be so consumed with chronic pain and acute attacks at random times that going to work everyday is like climbing a mountain and worrying about getting back down again.  I wouldn’t be agonizing over the time that I am now having to spend away from my students, about colleagues having to step in for me. I wouldn’t feel so desperately guilty about the time that I have not spent with my husband and my son in these last two years.  I wouldn’t be considering writing letters to my loved ones, just in case.  That in itself is a terrifying thing to admit that you are considering.

In two weeks, I have my surgery.  I hope that it is the end of this and the start of me being me again, because I do not like what I have become.

By Sarah, Cheshire, England