Today I’m going to talk about my 5 deeply embarassing P’s.
Peeing, pooping, pumping, periods and penis.
How many people just left?
Life with an illness involves symptoms, that isn’t a shock to anyone. But a lot of these illnesses include symptoms that aren’t pleasant to talk about. Nor experience.
In the hope of someone newly diagnosed, or perhaps someone with a long established diagnosis, coming across this post, I’m going to write about the 5 P’s, the 5 most embarrassing symptoms I suffer. To show it doesn’t kill me with embarassment to talk about them.
Sufferers of an illness need to talk about them, not to everyone but to those close (and the Dr of course – see points 3 & 4 in Friday Five… ). It is common sense to know that living in denial of your illness is detrimental, it’s no less so to live in denial of a symptom(s).
I also want to raise awareness with non-sufferers that the people they know with a Chronic Illness probably have some form of symptom or another that is deeply unpleasant to experience, but even more so to admit to and talk about.
Those with depression may feel reticent to admit they can’t shower, brush their hair. That last night they cut themselves.
Those with IBS, or another illness involving the bowels, don’t want to tell anyone they have crippling, severe and explosive diarrhoea regularly.
Those with Endometriosis don’t want to tell you how painful peeing is, how unreliable and gross pooing or pumping is. How heavy their period is. That sex sometimes hurts like hell.
So, with no further ado (and a dire warning; this is not for the faint hearted!) here’s a little info on the not so glamorous symptoms of Endometriosis. Sit back, take a deep breath. Enjoy.
I’ll start with the least embarassing, to ease everyone in. Peeing isn’t so bad.
Everyone pees, it is often depicted in films, writing, even in day to day life, that many women have a pea sized bladder. It’s even cute sometimes, the picture of adorable, slightly annoying, femininity. Endometriosis is, after all, an extremely feminine illness (I’ll give it it’s due where deserved).
I do not have a bladder the size of a pea. I just have an angry bladder that does not like to be ignored.
I remember the time I lived in denial of peeing being an issue for me, I under estimated the effect Endometriosis had on my waterworks.
And so, one day well over a year ago, I went to the loo after finishing work, walked to catch a bus to the stableyard and felt a little like maybe I needed to pee again when I reached the bus station.
“I’ll just hold it in” I thought “it’s not a very long bus journey”
Fool. As the bus journey drew on, the slight nagging became more forceful in nature. Five minutes or so from my destination, I contemplated disembarking the bus to pee and wait for another but I put this thought to the back of my mind, buses aren’t too regular at this time and c’mon – I’m 25, I can hold it.
By the time I reached my stop, my bladder was pissed (excuse the pun). I had really awful cramps accompanying the normal discomfort of needing a wee, as I walked the short walk from the stop I started feeling nauseous and light headed through pain. I reached the yard and peed as soon as I got there. The cramps didn’t go, they eased a touch but the remaining pain was still terrible and lasted all night.
This happened once more before I left my “Peeing Denial” and since then I just go with it. If I need to pee, I fucking pee. If that means five times in an hour, so be it. If that means uncomfortable questions regarding toilet visits at work, that’s cool. If that means poor G deals with a “I need to pee” every two minutes, no biggy (if we ever have a child I swear that will be their first sentence). I wanna pee, I pee.
I have enough pain without causing myself an easily avoided trigger.
These two symptoms go hand in hand. They are not feminine, they are not cute.
I could put builders to shame. I live up North and I can make hardened Yorkshire men blush when it comes too pooping and pumping.
The Endometriosis found during my surgery last year was located in a sensitive place for BM’s (Bowel Movements) and wind. It now seems it may have actually spread to my bowels (it liked the view, so it moved there). This paired with pain medications makes anything involving my bowels pretty much a disaster area.
It often hurts to need to poop/pump. It often hurts to poop/pump. It often hurts after I poop/pump. But like peeing, it hurts a damnsite more to hold that shit in (excuse the pun).
I was introduced into the world of Poop Pain two years ago, actually not by the Endo but by the post op meds following removal of an ovarian cyst.
1 week I went without “dropping the kids off”. And let me tell you – it hurt.
I cried out of my desperation to take a dump to my then housemate. My friend heard at length how I longed to drop a log. G received coy hints (because, y’know, we weren’t there yet, I just told him I kinda need the loo, then cried to my housemate at home). Oh how I dreamt of the satisfaction, of feeling empty. Dreams reminiscent of Disney’s Fantasia, all elements involved in the natural bodily function my body refused to carry out flew across my mind in beautiful synchrony.
Please, I just need to poo!
Eventually, on a fateful Tuesday, I took a very large dose of tablets to help things along and so was born the legend of Two Poo Tuesday. The day of relief.
Endo induced Poop Pain is a mix bag, god knows what my tummy will do each day. Sometimes I feel like I live in the bathroom, others I dream of Two Poo Tuesday, on rare days I function like a normal human. But when I wanna go, I go quick, or else I’m in for days of agony and wishing it would end. Poor G can be brushing his teeth and hear the familiar command “Get out! I need to poo!” (we’re there now, you can’t live with an Endosister and keep ahold of the fantasy she doesn’t drop a douse).
The same goes for pumping. I’ve found ways to “hide” it (tactical walks and exits from highly populated areas) but I do often remember those days, pre Endo, where I could hold one in for hours in attempts to keep the romance alive. The days G lived in beautiful ignorance, girls were sugar and spice, all things nice. Glitter, unicorns and rainbows. They did not pump or burp.
Nowadays we are a “don’t hold it in” household. We congratulate each other on our accomplished pumps and burps or we comment in disappointment “You can do better than that!”
And it is bliss. In the comfort of my home I don’t suffer the cramps caused by holding back for pride and to maintain an unmaintainable image, I don’t blush, or run outside without explanation. I laugh at myself, I apologize (no matter how normal this is for me now, I still have manners), I thank G (and my lucky stars) for still loving me depsite my highly unfeminine, feminine illness.
All girl’s of reproductive age have them.
Well, some don’t thanks to the wonders of Birth Control (and bodies that react appropriately to them and don’t just blankly ignore them). But the majority of girls, over the age of 15, at least know of them from friends. Yet they’re still so taboo.
I am convinced, had I confided in more friends that my periods were 10-14 days long, ridiculously heavy and often painful, I would have been alerted to something amiss earlier on in my journey.
In the post explaining my journey to where I am now (see My Story – The Blind leading The Blind…) I alluded to a visit to the GP regarding one particular period. The period to end all periods, which in my case was saying something.
She normalised it.
Had I spoken to a friend, a family member, a colleague, and told them that I had bled through 2 pads and a heavy tampon in the space of around an hour, I’m certain someone would have pushed me. Get that seen to, get a second opinion, that is not normal.
But I didn’t.
Women with Endometriosis are currently in Parliament to get Endometriosis into the education system. This is so *bloody important – (*I had to get another pun in there, I’m on a roll!).
Please visit Women with Endometriosis for more information. They also offer suport and advice from an amazing bunch of ladies on social media, please find their closed group here Women with Endometriosis FB Support and join if you are an Endosister.
I now have the Mirena Coil, and the only real accolade I can give it from personal experience is that my periods are now much lighter. However, they still hurt, a lot. And they still last anywhere between 10-14 days. In addition to this I still suffer ovulation pain.
With all this in mind I often find myself explaining to curious (and sometimes not so curious) friends, family and colleagues – “Oh I’m at so and so point in my cycle, that’s why I am in pain” – this is then met with pointed silence, an awkward look or an “Um…oh, okay”.
Cycles are taboo. So you try not to tell people you’re “On” or that currently your left ovary is ovulating, which by the way hurts so much because it is fused to your womb. You try not to tell them about the area of your life that most significantly impacts you, that is often the most contributing factor to whether you have a good day, or a bad one. You try not to but it’s hard when your life revolves around it.
This relates to painful intercourse. My deepest apologies to any men who have followed this post through it’s course to now find I am not going to discuss an embarassing penis issue…
I won’t go into lots of personal detail on this one, largely because I am part of a loving relationship and don’t want to invoke G’s personal life into discussion.
With Endometriosis, sex hurts. Not necessarily all the time (thank the lord!) but it can be painful both during and after, taking pleasure away and creating anxiety.
It’s taken a while to come to terms with this one. It’s an issue I see very little discussed on support groups. When it is, a woman, clearly at her wits end, will very apologetically and in an abashed fashion make an enquiry. The post will then blow up with comments from the masses of women who were desperate to talk about it but didn’t dare to broach it.
This symptom of Endo strips a woman of her intimacy, her feminity. She questions her relationship, her suitability as a partner. Not because her significant other isn’t vastly understanding, an amazing amount of men are, but because in addition to the pain, the anxiety, the constant “feeling like shit”, the overwhelming feeling of just, well, everything, she feels guilty.
There is the long standing joke around “I have a headache”, now try “It’s a work night and I can’t afford to have tomorrow off if it causes too much after pain” or “actually tomorrow night I have plans that require me not to be doubled in pain from “getting jiggy with it” tonight, maybe Friday? I have nothing planned for the weekend”.
It’s frustrating, it’s embarrassing. Endometriosis does not take a woman’s need or want to have sex, it just adds a level of fear and varying levels of discomfort into what should be pleasant and intimate basic human need.
I think many want to ask the question about Endo and sex, even non-sufferers, but they don’t. I don’t know how often G is asked, I am asked rarely, usually by someone who has gotten to know me well and plucks up the courage to meekly ask:
“Um, does, you know, sex hurt?”
At times, yes. Yes it fucking does. (I did it, pun intended).
So so few women talk about this part of it, for ages I didn’t either. And then I came across women in my life who complained of stomach pain, after some pressing it transpired they suffered awful periods too, I mentioned Endometriosis and they looked unconvinced. That is until I mentioned:
And the lightbulb moment hit. OMG I’m normal. They opened up, revealed more symptoms, they agreed to go to their GP, push for that referral. They took control and began pursuing the diagnosis.
This is the very reason we sufferers need to feel okay talking about our symptoms when needed, however embarrassing. We need to lead those new to it all, have the confidence they haven’t yet found.
So everyone who has read this to the end, first, thank you. By reading every Embarassing P you have proven that it isn’t too much, this can be talked about. I can confirm that having written it all down (with finger hovering above the ‘Publish’ button), I have not died from embarassment (I cannot of course speak for you readers).
Sure, not everyone needs to know. They most likely don’t want to. But day to day life should never have elements of shame to it when speaking with those near and dear.
Do not be embarrassed and do not be ashamed. These symptoms help identify what is wrong. They direct a sufferers life, maybe not in ways they want them to but hey, unfortunately it is what it is.
Don’t double your suffering, or the suffering of someone you know, by adding further emotional discomfort.
Talk, be talked to, laugh, show strength and remember that no amount of denial is going to make that symptom go away.
Most importantly remember that by talking, you might just help someone else.