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Endometriosis Awareness Month March 2022 Goodbye Endo, hello life! (3)

Updated: Mar 16, 2022

I am staring at Robbie Williams. He smiles down at me from the ceiling of the nurse’s room at my local GP practice. He is showing off his six pack and I remark that whoever thought of putting his poster on the ceiling above the bed you lie on when you have a massive needle stuck into your tummy deserves a medal. I stare into his eyes intently. I am flirting with a poster, but trust me: if you saw the size of that needle you would also do anything to take your mind off the fact that this is shortly going to make its way into you. I’m usually not squeamish at all, but this needle is massive. I'm here to get my first of 6 monthly doses of GnRH injections, trade name Prostap. It's usually used to treat prostate cancer in men. Oh well, six months of no periods – got to be worth it.

You basically as far as I can make out from some internet research get injected with male hormones that put your female productive system to sleep. Obviously your hormones getting a little sex change from female to male means other effects. Medicine calls them side effects, but they are actually just direct effects.

After all, those female hormone elves have hundreds of little jobs in the body besides telling your endometrium to bleed each month that the male hormones you now have instead have no idea about. It’s a bit like your mum going on holiday and your dad not knowing how to switch the dishwasher on, where to put the washing powder in the machine or when to take the rubbish bins out. Things start getting a bit messy. I’m lucky: out of the numerous side effects that you can get, I only have two: hot flushes and a drop in libido.

I LOVE my hot flushes. I am always cold, so being able to walk on the kitchen tiles bare footed with a glass of chilled white wine in my hand is the version of me I always wanted to be. Goodbye hot cup of tea and woolly night socks, goodbye yeti woman, from now on just call me sex goddess. The only trouble is, my hot sexy body is just hot, not sexy. My libido has gone on holiday with the female hormones, I imagine it blissfully enjoying a pina colada under a palm tree somewhere on the other side of the world. With my female hormones and my libido on annual leave, I might as well be a piece of dead meat. The GNRH injections have turned my lush moist vaginal rain forest into the Sahara desert, no matter what tricks my husband and I try. I go and buy some lube, which at least keeps a smile on my husband’s face. (He’s generally the type of guy who likes getting to the point, so I suspect he secretly prefers not having to waste time on foreplay.) While I enjoy not being in excruciating pain every month, I don’t think I would want to live like this forever. Six months of my very own drought down below is plenty and I am already looking forward to the monsoon season starting again.

Maybe this is the point at which I should fill those of you who don’t suffer from endometriosis in on what us “endo warriors” (as I learn women like me call themselves) experience every month. This is a hard one. I really don’t believe any words can truly describe what it’s like. There is a part of me that wishes we could connect those non-sufferers who say things like “just pull yourself together” or those employers that think you’re faking it “to pull another sickie” to a pain machine for them to experience endo pain before they make derogatory comments.

Some people compare the pain to birthing contractions – you know those screams you hear down the hospital corridors when it was too late to give an epidural, that’s apparently comparable to us and I can totally believe it. With the difference that there is no cute baby to hold afterwards that lets you forget the ordeal you’ve just gone through and no minimum nine months wait for the next one – we get the pleasure of labour pain every month.

At times it’s like someone squeezing the organs inside you until you nearly black out (some women do). For those seven to ten days a month my period tends to last, there is a dull base pain that lurks in the background constantly. That base pain almost feels like a safe harbour compared to the ferocious waves that wash over me and knock me off my feet mercilessly, especially the first couple of days.

It’s the time of month I can be heard muttering in between the waves of pain that literally take my breath away “Why can’t I be a man?!” or “Please, just let me die, I can’t stand this any longer!”. At this point I should tell you that I’m naturally an optimist, a glass half full type of person, upbeat, smiley, sociable and someone who loves life. Once a month, I look at myself thinking “Who is this miserable, wretched wreck of a human, how did I turn into this?”.

I was told by numerous doctors that I have a high pain threshold, I guess that’s a consequence of being exposed to this level of pain every month: to a certain degree you get used to it. I remember going to a special acupressure therapist who asked me to tell him on a scale of one to ten how painful the pressure was that he was applying to my muscles, with one being hardly any pressure and ten being the most one could bear. The idea was he would press until he got to ten, keep up the pressure and then my constantly tense muscles would eventually relax by themselves, easing my pain. He kept pressing and I’d go “Mmh, I’d give that a two”, “now maybe a 4”. It took him ages to get to nine and he didn’t have the strength to get to my ten. The bizarre thing is, I almost felt proud of this. “See how much pain I can stand! I’m a true warrior!”.

Actually, it’s probably not a good thing. After all, pain is a warning system of your body to let you know something is wrong and needs your attention. Every month I’m left exhausted, tired of constantly fighting and tired of soldiering on.

Taking all of this into account, it’s incredible that one in ten women are estimated to suffer from this illness I had never heard of before I got diagnosed.

“Endo… what?” my friend says, when I tell her what I’ve got. This is most people’s reaction.

“Endometriosis. Quite a mouthful, hey? Apparently one in ten women suffer from it.”

“No way! How can this be? If that was true, we would have heard about it. We ARE women, after all.”

“Well, would we? Have heard about it, I mean? How often have you and I discussed our periods? I mean, I might have said, I feel rubbish, but that’d be it. And how am I to know that my period pain might be any more than someone else’s. I mean, you always hear PMT and stuff, you just think every woman goes through the same and it’s just what happens once a month.”

“Well, I can honestly tell you that I’ve never felt like you look right now! Christ!”

“Apparently it takes an average of eight to ten years to get diagnosed. Gosh, if I think how many times I’ve been to the doctor. For years they told me to take paracetamol. I felt like a total wimp, a hypochondriac, imagining things, wasting their valuable time.”

“Yeah, I guess you get told that lots of women experience period pains, and nobody can measure your pain against mine, there is no knowing whose pain is normal and whose isn’t.”

“You cannot imagine the relief I felt when I finally got a diagnosis. I’m not a wimp! I’m not imagining things! I’ve got an illness that has a name! I can now find out how to fix it.”

“What can they do?”

“Well, the doctor said the only thing is a hysterectomy and even that doesn’t mean I’ll be cured. In lots of cases endo returns after a few years, sometimes even months. My endo is spread too far to laser it away, which you can do in the early stages. Although it does tend to come back, so that would only buy me some time. I’ll see. At the moment I’m on these injections and they are great! No periods for 6 months.”

I’m doing a little dance of joy and my friend laughs, although the concern still shows in her face.

“It’s what they call a chronic illness. You live with it. For most women it gets better once you hit menopause. I’m 34. Maybe I’ll reach menopause early, like 42 or something. That would mean I’d have to just survive another eight years.” Thinking about this makes me cringe, eight years is a long time in pain.

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