10 Endometriosis Facts That Sufferers Want You To Know About

Before I begin I want to say that I am not an endometriosis sufferer. I am, however, directly affected by this disease because my sister was diagnosed with it 4 years ago. I have witnessed the condition taking its effect on her body over the years. I have seen her in pain and discomfort. I have supported her through 5 operations and seen it take so much from her but then watched as she has battled back… more so in the last year

The disease itself is a frustrating one. There is little known, there is even less spoken about and there is no cure. But one factor that stands out to sufferers is that the information provided doesn’t really hit the nail on the head. When you google Endometriosis you are usually met with words such as bad period pains, constipation, cramps, wind, nausea, painful sex… It doesn’t exactly paint a nice picture and it certainly doesn’t make it a subject that friends and family want to discuss.

I doubt you would want to see this on your newsfeed!

But these are the symptoms, these are NOT the facts of Endometriosis. The women who battle this invisible disease day in, day out don’t want you to hear about their bodily functions they want you to listen, to understand and to really get to grips as to what it is truly doing inside and how you can be there for them.

What is Endometriosis?

Endometriosis UK states:

Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.

Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. 

Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity. 

 

 

Endometriosis IS a disease

There should be no question here, yet often it is referred to as simply a bad period, an illness, a lady problem… It is so much more than this. Just because you can’t see it doesn’t mean it isn’t a disease… it is. It is inside the body, altering the way it behaves. It spreads and causes pain and, in some cases, irreversible damage.

 

It can only be detected via an operation

You may wonder why it takes so long to diagnose this condition in most cases. It is simply because Endometriosis is undetectable on any scan. After ruling out the common misdiagnoses of ectopic pregnancies, urine infection, kidney stones, gallstones, STI’s, irritable bowel syndrome… I could go on… the doctor will finally refer you to a gynaecologist who can then send you for surgery to investigate further and this is the only way to get a true diagnosis.

 

There is no cure

Ever wondered why a sufferer is having another operation? Did you think the last one cured them? It is because there is no cure. The only treatment options are to laser the endometrium to remove it or have organs removed… bear with me here I will be moving on to organs.

The endometriosis will continue to return due to the return of the menstrual cycle each month. There is just no stopping it.

 

It isn’t bothered about where it goes

Everyone hears endometriosis, thinks women’s problems and automatically assume that it is limited to the womb. Nope, it isn’t fussed where it sets up camp. Bladders, bowels and the appendix are nice and close by to reach over to and spread its cells. But if gone unnoticed, it can spread to any organ it decides to, including the heart and the brain.

 

It isn’t a Cancer but it acts like one

If the sufferer had Cancer you would be able to understand this term a little better because we are very aware of how that acts and what it can do to someone’s body. So what if I told you that the cells of Endometriosis and Cancer are very similar in structure? Would that surprise you? It did me, to be honest. But if using terms that many people are familiar with and turning it around to explain Endo is what it takes to get voices heard then here I go. Endometriosis spreads, it attacks organs, it causes pain and there is no absolute cure… just like Cancer.

 

A Hysterectomy isn’t always an answer

Oh, I can hear your cries whilst reading this ‘well why not have a hysterectomy?’ A hysterectomy may seem like the perfect answer – if the woman doesn’t want to have children of course (a separate subject) – but if the uterus is removed and even a speck of Endometriosis is left it will continue to grow and spread. This is because each month it will still bleed and shed… yep, even though the womb has gone! It has a cycle, you see, and it will stick to this. The problem which is then at hand is that you cannot remove every organ going… obviously! Using a laser on certain organs may not even be physically possible. They just don’t know.

 

It can leave you infertile

You may not want to talk about your friend’s lady parts or their bowel movements or their painful intercourse but what do you think when I say that Endometriosis significantly affects their chances of having a family of their own? Many women are living with this condition and do not even realise until it comes to the point of trying for a baby and it just doesn’t happen – often triggering the diagnosis from a doctor. The symptoms don’t always show and how many of us suffer from painful periods each month and just think this is normal? Why would you assume that your pain isn’t the same as the next woman? Cysts are commonly found on ovaries and this can be one of the main issues. Another is that the environment just isn’t hospitable for a fertilised egg. 

 

Support is needed

As with any illness, Endometriosis sufferers need support and understanding. They need to be able to talk about it all as this is part of the therapy of it all. Invisible conditions may be difficult for you to get your head around but imagine what it must be like to be the one who is living with it each day. I urge you to find out more, do a little research and ask your friend or family member who is affected, what they are going through, what you can do for them and just offer up a friendly ear and a cuppa.

 

We need to learn more

Research is lacking in this area and so much more still needs to be discovered about this disease. As with all illnesses, we cannot cure when the knowledge is full of gaps. 

Endometriosis needs to be discussed, the awareness needs to be increased and ladies please start talking about women’s health issues more openly.

 

 

Em xx

 

 

 

8 thoughts on “10 Endometriosis Facts That Sufferers Want You To Know About

  1. I have heard of Endometriosis but never realised how bad the symptoms actually get. Your poor sister. This is a fabulous post letting us know what it’s really like and what we can learn. Thanks xx

    1. Thanks for stopping by. It is an awful disease and having met more sufferers this week I just felt that I needed to speak out. I have 2 other posts on endo, one of which was written by my sister and is very inspiring xx

  2. This is one of the best, most informative, posts I’ve ever read about endo. It’s a recent diagnosis for me, one that came out of the blue because I’m one of the lucky ones that had very few symptoms. When I had my emergency c-section they kept me open so they could take photos of my insides where it had spread. I was told an MRI could detect it but when I had one later they couldn’t find anything, which, having seen the photos, I always found strange. Now I know why!

    1. Thank you so much. They knowledge came from listening to women this week which inspired me to speak out for them and put the record straight. It is so frustrating watching my sister having to explain her condition over and over again. If people just stopped and thought about it as more than just a bad period they may start to learn a little and we can raise so much more awareness. Hope you are managing it all ok xx

  3. Such an informative and interesting post. I am ashamed to admit that I had always assumed it was limited to the womb. Thank you for opening my eyes. I cannot imagine how challenging it must be to live with on a day to day basis. #ablogginggoodtime

    1. Thanks for reading. My sister has taught me so much about this disease and I went along to a support group with her and the one thing I took from it all was the fact that there was little awareness and support for endometriosis sufferers. I hope by speaking out I can help in my own little way xx

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