Personal: Endometriosis? More like EndometriNOsis!

Endometriosis

***This post is VERY wordy, VERY sweary and VERY graphic. I’m going to talk in detail about periods, bleeding and conceiving. Please do not read this article if you are triggered by blood, chronic diseases, childbirth, female reproductive organs or difficulty having children. Instead, why not read some of my previous posts like THIS ONE about some clothes I got from lessthan10pounds or THIS ONE about my interview with Lovedrobe?***

If you are looking for a sensible account of Endometriosis, this isn’t it. I am going to do lots of silly analogies and swear quite a bit, mostly because I’m having an Endometriosis attack as I’m writing this sooooooooo….get used to it. However, if you’re looking for honest opinions, you’re in the right place.

For three out of four weeks of the month, I have some painful days and nights and thus turn into an actual banshee. My back will hurt one day, my legs the next, then my hips. I’ll be really tired, quite irritable and I’ll find it really hard to concentrate. I basically have all the symptoms of a period (soz to any boys reading this) for most of the month – god bless my girlfriend for having to deal with me!

All of this is because I live with something called Endometriosis. Endometriosis is a silent, chronic and debilitating disease that affects 1 in 10 women in the UK. That’s quite a big pot of women! Yet most people don’t really know what Endometriosis is, nor how it can make women want to murder pretty much everyone around them.

The Science Bit

So what actually is Endometriosis? If you’re grossed out by periods and the female reproductive system, I’d suggest going on to a different page and reading about cats or something, because I’m about to get hella graphic.

Every month a woman has a period. That means the lining of their baby machine (a.k.a womb) throws a massive wobbly because there isn’t an embryo in it and decides to fall away, bringing with it pain, blood and clots. If you don’t get periods, picture stubbing your toe and the pain you get from that, but put that in your back and sides and then have someone boot a football at your groin. Then you’re about there.

For women with Endometriosis, that womb lining that falls away each month actually grows elsewhere in their body too. It can grow on their ovaries (that are completely separate from the womb, FYI), on and in the bladder, in the bowel….in fact, in anywhere on a woman. There’s been some cases of it growing in women’s lungs.

An image of a uterus showing endometriosis adhesions
Photo taken from Endometriosis UK

So just like in a period when the lining goes mental because there isn’t a baby in it, Endometriosis does it to. Only the difference is, it has nowhere to go. Cue lots of pain, swelling and generally feeling bloody knackered because your body is attempting to kill you from the inside. It isn’t, but it fucking feels that way.

One of the most ridiculous things about Endometriosis is that you get 4 different stages of it. Stage Four is the most severe, but pain is not relative to the stage of Endometriosis that you are at. You can be a Stage One girl and feel like a steamroller is running over you on a daily basis, or you could be Stage Four and feel absolutely nothing. It’s essentially a disease that trolls you from the inside.

Symptoms of Endometriosis

There’s a few symptoms that come along with Endometriosis, which I like to call the HORSEMEN OF DOOM.

  • Pain. Lots of it. In many, many different places. Mine appears to happen in the small of my back, the tops of my legs and what feels like on my kidneys.
  • Fatigue. And I don’t just mean feeling a little sleepy – the kind of fatigue that makes you stay in your PJ’s all day in a horizontal position because you don’t have the energy to sit up, let alone go out and do an actual job.
  • Feeling depressed or low, because you’re so frustrated with feeling constantly broken that you do a lot of crying. And feeling generally shit about yourself. And like you’re the only woman in the world who has periods this bad. And you think the people around you think that you’re just making it up.
  • Sex related issues like pain when being penetrated (like you’ve got the worlds SHORTEST VAGINA) or complete lack of sex drive because it feels like you’re getting poked by a hot poker wrapped in razor wire.
  • Period pains without bleeding. And when you do bleed, you get that weird sticky blood at the beginning of your period as well as at the end of it and in between the weird sticky stuff, your period can resemble chopped liver. That’s if you even have periods, because sometimes it can be months before you actually bleed, but christ do you get all the pain still.
  • Problems with your tummy that doctors diagnose as IBS (Irritable Bowel Syndrome), but could quite possibly be down to Endometriosis
  • And finally, the biggest fucking annoying thing about it is the problems you have making a baby. It varies from quite difficult to unable to conceive – which makes this the ultimate shithouse disease for babes wanting babes.

Getting Diagnosed

Getting diagnosed with this dickhead of a disease is about as easy as trying to stop wars, cure cancer and paint the nails on your right hand without smudging them all at the same time. First you’ve got to get past your GP which, if it is anything like mine, you will have to book an appointment with for next January because that’s the ‘soonest they can see you’. If your GP is good at these kind of things, they will refer you to a Gynaecologist (or Fanny Doctor, as I like to call them).

Now the wait for a gynaecologist appointment in the London area is currently 11 weeks. I know this as I am currently about 4 weeks into that 11 week wait. When I lived in Nottingham, it was significantly lower than that, so I guess it depends on your area and the density of people who can deal with this issue.

The only way to get an accurate and definitive answer is to have a Laparoscopy. You might have a couple of ultrasounds and general finger tests by your Fanny Doctor but these may not show anything. In my experience, unless your Endometriosis is super bad, it hardly ever shows up.

A Laparoscopy is keyhole surgery where you are put under general anaesthetic and three tiny (and I mean tiny) incisions are made – two on your lower belly, one inside your belly button – and a camera on a stick is popped inside you along with any other instruments they might need. The surgeon will blow your tummy up with air to move the skin away from your organs and have a good old poke around to find any Endometriosis cells where they shouldn’t be. If they find them, they will more than likely burn them off with a laser, which isn’t anywhere near as rock and roll as it sounds. The whole surgery usually takes place within a day, and you might stay over if you are needed to for recovery. You’ll need about a week and a half off work, if not longer, just to let your innards get back to their normal selves. You’ll feel pretty sore afterwards, but as you are a warrior woman who has been living with Endometriosis, it’s a fucking walk in the park. You’ll also be given Tramadol, which is amazing shit.

You’ll have a few stitches that you’ll need to keep an eye on as they tend to be a little troublesome, spesh in the belly button. If they get infected (which you’ll know because it’ll be all red and puffy where the wound is and you’ll have weeping there), you don’t need to worry. Just pop to your GP and they will give you some antibiotics to fight it. Don’t put it off though, it’s better to be safe than sorry. Make sure you don’t do anything too strenuous like go to a fairground two days after your surgery (like I did) or go back to work whilst on Tramadol (like I did) because you’ll do yourself a mischief (like I did). Listen to the doctors advice, relax and take it easy.

Treating Endometriosis

Now here’s the fucking tricky part. There isn’t a cure for Endometriosis. It’s a chronic disease because it will never really go away, especially if you experience it in different places. That doesn’t mean it isn’t treatable however, but just know that you may not ever clear yourself of this fuckwittery.

You can get a laparoscopy and get the stuff lasered off and be pretty much symptom free for a glorious few months afterwards, but the little bastards grow back. You can continue to live with it, take birth control, pain killers and other remedies that make life easier and a little less bleedy, but it will still attempt to rule your life. You don’t have to let it, though. Most women find it acceptable to take a cocktail of painkillers and birth control to get through the day to day stuff, with the occasional laparoscopy to clear things out every now and then. Some women have even said that having a baby has reduced their symptoms, however I’ve already talked about how fucking difficult it is to create a baby whilst living with this shit.

The most effective way of treating Endometriosis is to have a hysterectomy. That means having your reproductive organs taken out, which in turn means no more periods, and more importantly no more children. This is a BIG decision to make, and one you need to discuss with your Fanny Doctor and your loved ones. The thing is, even if you do this, you may still suffer from Endometriosis if the cells are located elsewhere in the body like the bladder or bowel. If that’s the case, your Fanny Doctor will talk to you about your options.

In short, here’s a pamphlet. I am living with this disease, so if anyone wants to talk to me about it or wants advice, you are more than welcome to ask me. I can’t wave a magic wand and make it better though – I mean if I could I wouldn’t be dealing with it myself, right?!

You can get amazing advice, PDF leaflets and support from https://www.endometriosis-uk.org/ – I have even printed these off and shared them with my employer so they can better understand why some days I literally cannot get out of bed because of the pain, or why I sometimes bring a ridiculous amount of pain killers and a hot water bottle to work with me.

It’s not all doom and gloom – you are not alone, there are a whole network of women out there who experience the same shit as you. Make sure you talk to people about how you feel and look after yourself. And remember, you are a bad ass warrior woman who is kicking the shit out of Endometriosis, one day at a time.

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Plus-size, body positive, feminist, lesbian - ME. Lives in London, has a Nottingham heart.

23 thoughts on “Personal: Endometriosis? More like EndometriNOsis!

    1. Thanks Becca! It’s so true, listen to your body and if something doesn’t feel right, go and talk to someone about it! No one will think you are silly, and it’s always better to be safe than sorry.

      Lottie xx

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  1. Lottie, this is a brilliant and super insightful post! I hadn’t even heard of your condition before. When were you diagnosed? I suffer from Psoriatic Arthritis, we seems to surprisingly have a lot of similar symptoms to Endometriosis! Always here if you need a chat spoonie buddy!

    Chloe x x x

    http://www.ChloEllio.co.uk

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    1. Hey beautiful! It’s crazy how many people haven’t heard of this when soooo many women have to deal with it! I guess it’s a bit of a taboo subject? I got diagnosed about 4 years ago and I’m currently awaiting another laparoscopy because it’s come back with a vengeance! One thing it has done is highlighted how many spoonie girls there are out there – ditto to you! I’m going to read up on Psoriatic Arthritis now!

      Lottie xxx

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  2. Wow, I’ve been educated quite a bit through your post. I don’t have endometriosis as far as I know (I do have some of the symptoms but they could be due to other things, like, you know, IBS). I wanted to say the worst thing I’ve ever heard about endometriosis is that it’s a “benign” disease. They mean it isn’t cancer, but WTF is benign about something as debilitating as what you describe?

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    1. Exactly – there is nothing ‘benign’ about this! It affects your day to day life and can have pretty dire consequences if you allow it to take hold! I’m so glad you’ve learnt some things in between all the swearing and personal stuff, haha! That was my goal 🙂

      Lottie xx

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  3. Lottie, I am so sorry you are going through this…or that any women is for that matter. Thank you for the education. I had issues getting pregnant (they did not end up finding endometriosis) but I had the laproscopic procedure done and it sucked! I live in Canada and the wait to see the gyne was about 4 months and then we waited another 3 for the laproscopic tests. To channel my “inner Lottie”…. It was pure fuckwittery. Or just a load of horse shit. I hope you have more good days then bad 🙂 xoxo
    Lisa

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  4. Lottie, I am so sorry you are going through this…or any woman for that matter. I learner a lot from this post so thank you! I struggled to get pregnant and also had the laproscopic procedure done (I had no endometriosis) and it was awful! I live in Canada and the wait to see the obgyn is 4 months at least and to another 3 months to have the laproscopic procedure done. To channel my “inner Lottie”… That is pure fuckwittery. Or just a load of horse shit. I hope you have more good days then bad. Xoxo
    Lisa

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  5. My friend has this and she suffers horrifically. She sees an expert who advised her to change her diet and use a hot water bottle to alleviate the symptoms. She’s vegan now and avoids all gluten as it makes it easier on your body as a whole apparently.
    I have PCOS and my uterus hates me so I get killer cramps, thank Christ it’s only for a week a month, couldn’t imagine dealing with anything more. You’re a champ in my eyes. And men think being a lady type person is easy!!

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    1. Thanks Mads! I do the hot water bottle thing regularly and I attempted a gluten free diet to see if it would help and I believed that it did, however it was just a small respite and didn’t really help me. PCOS is also horrid, you poor thing! We are both warriors! Xxx

      Liked by 1 person

  6. Great post. I think I suffered undiagnosed as I had so many problems. I have a two year old now and would rather give birth than go through all the period pains again. Luckily they seem to have eased now

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    1. It’s funny, a lot of mums have said how their symptoms have eased since having children! A friend of mine was unsure she could conceive and once she had her daughter her symptoms all but went away. Thanks for reading! Xxx

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  7. Well done for speaking out about it. I am lucky that I don’t have to deal with this, but I feel more educated now for sure.

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