Endometriosis. How I hate thee…

Here’s a challenge I’ve set myself; write a blog about living with endometriosis, and make it funny, inspirational and try not to moan too much about it.

Before I start, I just want to say that I acknowledge that there are lots of people who have medical issues that are far, far worse than my own. This is not a competition in misery (I’m far too laid back to win that one) this is merely a reaction to this stupid, horrible and unfair condition.

For those who don’t know, endometriosis is a gynaecological condition which affects women of child-bearing age. Essentially, bits of stuff that should be inside the womb, are set free by your treacherous body, and make their home outside of the womb, and cause you more pain than you want, by doing so.

But it’s a weird one. Some people have very mild cases of endo, and some experience the other side. And even though it is estimated to affect around 2 million women, diagnosis is tricky because symptoms are similar to a plethora of other things, and because it exhibits so differently in different women. The only definite way to confirm it, is by having minor surgery in a laparoscopy. Which hurts.

I was diagnosed with endometriosis when I was 31, and it was a relief to have a name to put to the pain I was experiencing. It’s likely that I had endo for a good ten years before diagnosis, but because symptoms include pain, bleeding, tiredness, pain, discomfort, infertility, pain, exhaustion and pain, very often women are dismissed with a curt “it’s time of the month related” diagnoses and told to take 2 paracetamol and have a duvet day with a hot water bottle.

I spent years assuming that I was just a massive wimp when it came to pain, and that all the other women I knew didn’t seem to let their periods affect them like I did. I remember walking to 6th form when I was about 17, and collapsing on the street with agony. I was bent double on the floor, completely unable to get up. I assumed I was going to die. A kindly motorist stopped, picked me up and drove me home. I went to my (male) GP who informed me that it was just a period pain, and who told my mother that teenage girls are prone to over-dramatizing, in order to get a day off school.

So, I carried on throughout my twenties, experiencing serious pain every month, and putting it down to my general wimpishness. I mainlined cocodamol, made best friends with a hot water bottle, and spent around 3 days of every month crying.

So, when I was diagnosed, the first thing I felt was complete relief. It wasn’t my fault. It did hurt!

So, I joined a couple of societies to get some tips and advice, and share stories. What I found was that lots of women – just like me – had gone years being dismissed. Often by other women. My co-endos have been told to “man-up” (nice), “grow a pair” (nicer) and just get on with it, because all women go through it.

It’s NOT like period pain. It’s just not.

Here are some of the things that endo sufferers go through. Some are my experiences, some are others, some are both, but all are real:

  • Waking up and being unable to put your feet on the floor to support your weight, as you are temporarily paralysed by pain
  • Being unable to go out of the house due to blood clot passing. Frequent and heavy
  • Marking off the dates on your calendar and not making any plans for around 3-5 days every month, because it’s doubtful you’ll be leaving the house
  • Being pathetically thrilled when it starts on a weekend, because you know that you probably won’t have to phone in sick to work. Again.
  • Going to the toilet at 1am, and still being there at around 3:30am. Every night for 4-5 nights. Because it’s the only place you feel you can safely not make a mess, and because your stomach feels strangely relaxed when you’re bent over in a crouching/seated position
  • Crying. Solidly. For hours. Because even though you know it will pass, you also know how much it will hurt before it passes.
  • Feeling pain in your shoulder, kidneys, back, calves, stomach and lower arms. Because these are somehow linked to the lining of your womb. Don’t ask me. I’m not a doctor
  • Not allowing anyone to touch your skin, because it burns
  • Nosebleeds. Frequent nosebleeds
  • Hoping that the dog won’t run off his lead, because the act of raising your voice might make you throw up
  • Throwing up. Suddenly and without feeling sick first. Then feeling sick after.
  • The agonising, doubling-up pain, which can last for days as it comes in waves. Making it untenable to walk, sit, lie or be still comfortably
  • The fear that you will pass out, due to blood loss, anaemia, or just queasiness
  • Lack of appetite
  • Acne
  • Infertility
  • Pain during sex
  • Burning sensations in your stomach
  • Longer and more frequent periods
  • Dizziness
  • Realising that endo can strike twice a month – as you menstruate and as you ovulate. Bonus

For me, I have tried to describe it to my nearest and dearest, as I sit in the corner of a room, with my face pressed against the wall to try and cool me down because I’m burning up. I find the foetal position helps with the cramps, but not the clotting. It feels like someone has reached inside me with a fistful of razor blades and lit matches, with the sole intention of twisting and pulling my insides out of my body. At the same time, someone else is punching me in the kidneys and pressing my forehead on both sides. Nothing works to ease the pain, and so – coupled with the hormones of menstruating as well – I either cry or shout or both, knowing how unreasonable I sound, but being powerless to stop. I can’t read the story of “The Wolf and the Seven Little Kids” where a wolf has several large boulders sewn into its stomach, because that is how I feel for around 5 days of every month; that there are boulders inside me, pushing down, accompanied by a burning, cutting feeling that affects every facet of my body. In bed at night, my body is freezing, but my face burns up, so I cannot get comfortable. I sleep on two towels. I don’t really eat or drink much, because I feel like I’m going to throw it all back up. I often do. There is no cure, so I know that this is going to happen at least 12 times every year. Some months are worse than others but I never know which ones in advance. In the last fifteen months, I have been hospitalised twice.

And then there is the elephant in the room, and the bit that makes my (already boiling) blood boil.

Infertility.

Endometriosis sufferers often have primary or secondary infertility. Me? Full blown infertility, no chance of conceiving. I know. I’ve tried.

Which makes me so angry, because the sole point of sodding periods is that they prepare your uterus to receive a fertilised egg. That is the whole point. So why on earth should there be a condition which makes these periods so painful and debilitating on such a regular basis, and make the sufferer feel the pain far, far worse than most people, and yet have no actual purpose, reason or function, because the uterus in question doesn’t bloody handle the fertilised egg at all. There is no fertilised egg. Pregnancy doesn’t actually occur. Why give endo sufferers shitty horrible painful periods that have absolutely no use or end product?

I do realise that I am pissing into the wind here, by the way. I know there’s not a clinician sitting on a cloud, handing out illnesses and conditions, and consulting medical committees on the best way to screw earthlings over. Although, it would be better if there was, because then there might be a complaints division, and I’m quite good at complaints.

But, no. Endo sufferers are generally left to it. Diagnosis remains unclear for many, and usually only an eventual concession. Even after diagnosis, the treatment still seems to be “invest in a good hot water bottle, and shares in Nurofen, and batten down the hatches” for a (sometimes) pre-determined period of time each month. I say “sometimes” because another jolly symptom can be irregular periods. Which is bloody lovely when you’re trying to conceive. The only relief that can be offered is more laparoscopies, to remove the patches of endometriosis and scar tissue. But this is only temporary, because after it is removed, it is likely to start building up again.

So, it’s a kind of lonely condition. Partly because of the issues with diagnosis, partly because other women have period pains and so the consensus is that it can’t be all that bad, and partly because there is still a taboo when it comes to talking about “wimmin’s ishoos.” People are weirdly coy about the “down there” stuff. I know women who hide tampons in their shopping basket so other people can’t see, and who select checkout cashiers who are mainly older women, as opposed to teenage boys. I’ve seen teenage boys smirk at girls who have sanitary protection in their school bags, and I’ve seen and heard parents whispering about their daughter’s periods as though she’s got a detention. We might as well walk around with someone ringing a bell in front of us shouting “unclean…unclean…”

Periods are a fact of life, and they involve blood and bleeding, clotting and cramps. For some of us they involve an awful lot more, and if I’ve got to go through all of the above every shitting month until Mother Nature decides I’ve paid enough penance for sins I must have committed in a previous life, then I’m damn well not going to shy away from talking about it.

Fellow endo sufferers everywhere…I (very literally) feel your pain.

Now…bring on the menopause (YIPPEE)

IVF and that

So, it’s in the news in the UK that NICE (a rather jolly little acronym for the National Institute for Health and Clinical Excellence) have recommended that IVF should be offered to couples after 2 years of trying to conceive, and that the upper age limit for a woman should be moved from 39 to 42.

Which seems very progressive and less arbitrary than the previous cut-off age.
But the reality is that we can debate it until we are blue in the ovaries, it’s not going to make very much difference at all.

The trouble is that these are only recommendations so the NHS trusts are not bound by these guidelines, which only means that they CAN continue to treat for fertility problems past 40 if they choose, not that they will.
Additionally, after 2 years of trying to conceive naturally, a couple can be referred for fertility treatment, instead of 3, so the ball should roll earlier on in the process.
But what does that mean in real terms?

My dear husband and I started trying to conceive, in a general “let’s see what happens” kind of a way when we were in our mid 20s. Nothing happened, but we didn’t get checked out until we had been not “not trying” for around 5 years.

We were tested and found to have “unexplained subfertility” and, because it had been longer than 3 years, we were referred immediately for tests within the NHS. Our GP “fast-tracked” us, told us that we were lucky that we lived in the right Post Code, and that our IVF journey could start from the moment I was first stabbed in the arm with a vicious needle by an angry phlebotomist.These preliminary tests (both male and female) took around 9 appointments and 11 months to complete. By which time, the first set of tests were out of date, and so had to be done again.

Around a year or so after we were referred, and after several days off work and trips to the hospital, a consultant (not our consultant – the one we were officially under; we never actually met him) advised us that we were eligible for one NHS funded round of IVF and that we could start as soon as something or other was sorted.

This was most confusing, as we thought we’d already started a year previously.

Anyway, from that point we had to do lots of visits to private clinics, because that’s where fertility treatment is actually done, and we had to have a bit of counselling, and then we had to have some more tests, because the results of my day-21 blood tests had been mislaid, and by the time we actually were booked into the clinic for our first appointment with the clinician, it was just over 2 years from the date we had been initially referred.
After trying to conceive for 5. And that was before the treatment had even begun.

What I am trying to say is that the guidelines can be whatever they want to be, the facts are that the reality is often completely different.
The NHS is underfunded for fertility treatment as it is – so increasing ages and decreasing timescales isn’t worth a bean, if they ain’t got the cash. And if, as in our case, the guidelines are nothing more than a dusty book on a shelf, then there’s nothing to even debate about, because until the real problems of consistent treatment and care are addressed, this is just another non-starter. Add to that the fact that IUI (Intrauterine Insemination) has now been found to be no more effective than sex, then it seems that there are even medical issues to balance out before we mess around with eligibility.

There are arguments out there (generally from people who have never struggled to conceive) that IVF is a waste of NHS funding anyway, and the money should be better spent on cancer research, the elderly and other more worthy conditions, but the trouble with that line of thought is that you head down a murky road of those who “deserve” medical assistance. And the NHS is about care for everyone, not just those with life-threatening conditions.
Because the truth is, that even though having children is not a right, and that infertility is not life-threatening, it is a condition which is all-consuming, heart-breaking, devastating debilitating and painful. And, no, that isn’t an exaggeration.
Depression and infertility go hand-in-hand, and the truth; the ugly, ugly truth, of infertility is that it can adversely impact every facet of your life. So even though it isn’t life-threatening, it is still hugely important, and fertility treatment exists. Therefore it should be offered.

Let’s face it, it’s not like for every couple who are refused NHS funded treatment, the Trust bung a few thousand quid into the cancer pot. Budgets don’t work that way.

The NHS is free at point of use, and fertility treatment is a service that they offer.
It is already a lottery, and the funding is based on throwing up a dice and seeing if it lands on a 6. Or something equally capricious. So, really, all of this consultation and recommending that something or other ought to be something else, is nothing other than smoke and mirrors.
There are already problems within the system, and these changes may improve some people’s chance of parenting, which is all to the good, but it’s not really a new issue, and it’s not tackling the real ones.

And if you were wondering, we actually refused fertility treatment in the end. Felt it was invasive, with little chance of success, too expensive and not for us.

And have never regretted that decision.