Did you know that having a stretch really helps to reduce period pain?

Well… Shit! Turns out I wasted my time having an operation to separate my tethered organs, turns out I could’ve just had a stretch.

Okay, a lot of the advice that we receive is well meaning, but it can be a little patronising to receive unsolicited advice from someone who doesn’t understand the extent of what you go through with your condition. 

It’s like telling someone with chronic fatigue just to take a power nap to wake up or telling someone with cystic fibrosis to use a bit of Vicks VapoRub because that’s what works for you when you need to clear your airways. This is then followed by a feeling of frustration or insult from the advice giver when you refuse to ‘just give it a try’ because you can’t help someone who doesn’t want to be helped.

We are genuinely pleased for you able-bodied, not chronically ill person, that you have found something that works to get you back on your feet after feeling slightly under the weather, but sadly for those of us with ongoing, long-term conditions, other than these things perhaps bringing a little comfort, we tend to need something a little stronger than a packet of paracetamol and a subscription to yoga on a Tuesday.

It’s one thing receiving this kind of advice from Becky down the road who swears by her tube of deep heat and a cold flannel for her forehead, but when you start to hear this kind of advice from medical professionals who don’t seem to have much knowledge on a condition that as many as 1 in 10 females are suffering from, it does feel a little worrying.

Here’s a few nuggets of advice that I was handed from medical professionals through my journey of pre-diagnosis and beyond, rated from bad to worse… 

Doctors, actual words: 

“Watch me pour some water onto a tissue so that we can see how quickly liquid spreads. See, you’re not leaking heavily at night, you are just not wearing long enough sanitary towels “

This absolute gem came from a male doctor before I had even hit my early teens. I was a child who was bleeding so heavily that I was waking up looking like a scene from the movie Carrie and missing school because my periods were stopping me from being able to function like a normal human. I was also very pale and underweight, but apparently, I was too young to have anything wrong and just needed to be educated on how liquid works when it comes into contact with material.

Have you tried paracetamol? 

Ermmm.. what do you think, Doc?! Of course I have tried paracetamol, it’s one of the only painkillers that I can buy from shadforth pharmacy down the road and it does not work to soothe my feelings of an invisible spear piercing through my womb, which funnily enough is why I’m here and no I do not wish for you to put any paracetamol on prescription because it is much cheaper to buy than the cost of a prescription itself which I can’t get out of paying for because the government likes to see my condition as cope-able period pain because the medical world is in denial over how much this fucking hurts because giving it recognition as the crippling chronic illness that it is would be way too expensive!

Have you tried yoga? 

Fuck off! 

No, but seriously .. is lying on the floor with my feet in the air, making humming noises whilst trying not to fart, going to heal my tennis ball-sized cysts? Is it? Get in the bin!

How about a hot water bottle? 

How about looking at this unsightly mottled skin rash across my bloated stomach where I have tried to soothe myself with heat, but accidentally taken it a bit too far and burnt myself in a plea to distract myself from the searing pains shooting through my insides? Does that answer your question? Give me something stronger! 

Why don’t you go away and have a baby? Your scans are clear so you just need a clear out, giving birth would do it! 

Okay .. where to even start…

Firstly, this nugget was given pre-diagnosis when abdominal ultrasounds couldn’t pick up my condition, (it rarely does).

I was young and single and anxious about the fact that I was trying to seek help and answers and getting nowhere fast. Not only was I then made to believe that I was just experiencing these horrific pains and feeling unwell for no apparent reason, I was told that my only way of feeling better was quite literally by getting laid and to be honest, I wasn’t convinced that this would go down too well on a first date ..

“what are you looking for in a relationship?”

“oh you know.. normal things… a cure.. in the form of a baby”.

As I’ve grown older and wiser post-diagnosis, I become more shocked and angry about this advice. It’s not advice that I took on or followed through with but to tell someone with any kind of undiagnosed pain to just go away and give birth is in my opinion, a little bit surreal and I think the only thing that needs a clear out is that doctors office.

Just to confirm, having a baby is not a cure for endometriosis. Endo is a full-body disease that can develop after giving birth, or even after menopause. Endo being a period problem is a misconception because of how some of the symptoms manifest. You would think that this would be textbook information in the medical field, but apparently it isn’t… or perhaps it is but diagnostic surgery is way too expensive, so doctors prefer to fob patients off with painkillers. Just my opinion.

Anyway, what with being soaked in blood, shoving paracetamol down my throat, trying not to shit myself with my bum in the air in yoga, burning myself with a hot water bottle whilst shedding my insides out through my vagina, I found the whole misdiagnosis thing to be wearing a bit thin on my nerves and I found my mental health sliding away like my night time liquid infused sanitary towels with wings.

Imagine the mental effect of feeling like you have lightning strikes shooting up your bum and being told that nothing is causing it other than your imagination. 

Imagine being soaked in blood (regularly) and told that you are just unlucky and having heavy periods and that you will grow out of it, but the older you get, the worse it gets. 

Imagine being in so much pain that it makes you collapse and unable to move and being disbelieved whilst being told that you are causing it to yourself. 

Imagine being told all of this for years whilst your uninvestigated, undiagnosed disease is making you more and more sick as your organs are sticking together and you lose all of your hair in the process due to a mixture of imbalances in your blood and the stress of feeling regular, unpredictable, stabbing, tearing pains which is controlling every aspect of your life whilst being told that it’s all in your head because doctors won’t look any further than an abdominal ultrasound.

Imagine all of this whilst trying to live a full and normal life and hold down a job because you can’t get any help or government support because your disease is underresearched, unrecognised and fobbed off as women’s problems. 

Now imagine that you don’t have to just imagine it because this is the nightmare that you are living and at times barely surviving. 

Imagine how your mental health might take a bit of a turn unless you are some kind of robot, or a psychopath.

Check back later for my post on Endo & MH.

Can you relate to receiving less than helpful advice? Comment your best advice and let me know xx