Endometritis is something I had heard of but never understood or cared to learn what it was. It wasn’t until I had met someone who suffered from it that I really started to understand how debilitating it was and then I started to notice just how many women suffer from it and how little awareness there was about it.
I have seen and heard of many people having to give up work and change their whole life because of what is a relatively unexplored illness so when a friend of mine offered to write a blog post about her experience, I was more than happy to do what I can to raise awareness of the condition. She has chosen to remain anonymous but has bravely written the below. Do feel free to share your experiences in the comments, the more than we talk and raise awareness, the more likely people will start to take Endometritis seriously.
Guest post by ANONYMOUS
“You don’t know how strong you are until being strong is the only choice you have”, this quote has really stuck with me recently.
Imagine getting a diagnosis from a doctor that meant that you would most likely be in chronic pain for the rest of your life, that it would affect your relationships with partners and families and your ability to have children, it would affect your job, and your ability to go out and enjoy life.
That’s the world that women that are diagnosed with endometriosis face.
It’s been in the press a lot recently, with major celebrities finally coming forward to admit that this crippling long term condition is far more widespread than we would like to admit. It takes about 7 years to diagnose, and as many as one in ten women suffer from the condition.
Yep, that’s a total of 176 million women worldwide.
The disease is far more than a ‘painful period’, most are in chronic pain on a daily basis and the pain comes in the most obscure places. Abdominal, pelvic and back pain are common as is an internal ‘ripping’ sensation when you move.
There is no cure, and the treatment is currently shockingly bad, leaving women feeling frustrated, with nowhere to turn. It has resulted in women committing suicide because the lack of options makes them feel like they have no other option.
I am aware that I mention this fairly nonchalantly, but this is an important point. Women are KILLING themselves because they feel like there is no way out. They are leaving behind partners, family and in some instances children because they don’t feel like they can continue.
In fact, I could completely understand why women would feel this trapped, sometimes the anxiety is all consuming as you realise that in all likelihood you will be stuck with this pain for life.
To give you a bit of background, I was lucky and was diagnosed at 18, so I was prepared for what was ahead of me. Then came the battle. I have had to hear more than once that I am suffering from ‘period pains’, that I am attention seeking or that it can’t be as bad as I am making out it is. On more than one occasion I have blacked out from the pain and had to carry a spare change of clothes, but felt like I couldn’t speak out about it. This is mainly because it’s seen as wrong to talk about periods…
This year I have had a relapse and the pain has been far worse than it has ever been. I am constantly exhausted. My friends go out clubbing or out for dinner at weekends and I spend my time in bed watching TV. I so badly want to be ‘normal’.
I have an amazing husband that has been so so supportive, I could not ask for any more. But, I see the hurt on his face when he sees me in pain, it’s awful, and it’s really hard not to push him away. This disease has put a huge amount of pressure on our marriage, and I didn’t really want to talk about it. I suddenly realised that I didn’t want to live with me either, which is a very strange and backwards feeling. I wanted a way for us to walk away from all of this pain and hurt, but obviously, it’s not that easy!
However, I did realise that I was letting people down by not talking about it. Trying to remove the stigma around periods and conditions like endometriosis is going to be a battle that all of us are responsible for.
Within tight-knit support groups, I have met the most amazing women who I am proud to call my endo sisters. We are a great support network and are there through to help each other get through the darkest days.
But, young women aren’t being educated in this condition, and this is where we are majorly letting them down. It’s our job to educate young women that periods shouldn’t be so painful that you pass out, you shouldn’t be in pain every day, and there are things that you can do to treat endometriosis and limit its impact on your life if it is caught early enough.
The reason why this disease is not spoken about: it’s all because we don’t want to talk about periods.
Endometriosis has a similar number of sufferers to diabetes and asthma but receives just a fraction of the funding. Most research projects revolve around improving women’s sex lives or treating them with hormones that cause horrendous side effects. Some studies even look at the impact of endometriosis on partners.
Meanwhile, this disease is continuing to cause irreparable damage to women both physically and mentally, taking up to 10 years to be diagnosed.
So, what do we need from you?
Try to empathise with women who are struggling with this disease, find out how it affects them and just be there to support them if they need it. This can be a really lonely battle to face on your own.
Don’t be afraid of talking about periods, because with more women talking about it, the quicker we can educate young women and limit the impact of this horrible disease on their lives.