Endometriosis: my personal hell

I’ve been meaning to share my story for a while, but I didn’t have the strength… I was too embarrassed to talk about it, I didn’t want to victimise myself, or simply just not give an extra thought to this dreadful part of my life… And as a result I’ve been finding excuses not to post it. I’ve recently opened up to some of my friends and it’s been such a relief for me personally – mostly because they now understand what I’ve been and am going through.

So I’m sharing it here, hoping to raise a little bit more awareness about the condition that I’m stuck with: Endometriosis.

What is Endometriosis?

It’s a very painful, sometimes debilitating condition, when tissue similar to that found lining the womb is found elsewhere in the body, usually around ovaries.  When it breaks down and bleeds, as it would in the womb during a period, it causes inflammation and pain.

 

It is believed that up to 10% of women live with the condition, with some left infertile as a result.

Here are a couple of guides that would explain the condition better than I ever could:

The Guardian – What is endometriosis? A guide

NHS resources

Endometriosis UK – Charity Organisation

What’s my story?

I wrote about my surgery a couple of years ago, but a lot of things have changed since!

Ok, here we go.

You’ve all heard about period pains. Most girls who aren’t on hormonal birth control feel discomfort during their period and the level of pain can completely vary.

I was on birth control before, but I wasn’t happy with it, so in late 2015 I went completely hormone free. By the end of 2016 I was in great deal of pain – every month – to the point that I would have to call in sick at work. Don’t even get me started on how embarrassing I felt trying to explain this to my male boss, who has never even shown any sympathy. I went through the bureaucracy of NHS, being sent from GP to hospital nurse, back to GP, back to the hospital, until I finally managed to get an appointment with the gynaecologist, five months later; five very painful periods later.

The doctor suspected endometriosis, however they could only confirm the diagnosis via surgery. Which they did. And they cleared it out, put me on strong hormonal treatment to avoid re-growth and off I went to recover from the surgery.

The physical pain stopped completely, but my mental health started to deteriorate. By summer ’18, just over a year after the surgery I started to feel depressed and for the first time in my life I discovered what paranoia was.

Usually, it would be quite difficult to offend me. Usually, I wouldn’t blink an eye if the person I don’t care about said something negative about me. Usually, I would trust my closest friends.  But being pumped with the hormones changed everything. I became a different person: insecure, paranoid and deeply unhappy. I normally would be able to hold myself together in public, but if I had a couple of drinks, all these fears and insecurities that I’ve been guarding would explode over whoever is next to me.

I went to the GP, who advised against stopping the treatment and referred me to therapy, but it didn’t help at all, things were just getting worse. I’ve managed to alienate a lot of people around me and broke off a number of friendships. Christmas 2018 was the most difficult ever, and I didn’t even celebrate by 27^th birthday (and I am ALWAYS up for throwing parties). I was miserable and emotional, even watching X factor would immediately put me in tears. Yeah, gross, I know.

So then in March ’19 I’ve decided enough is enough. My mental health is more important than treating endometriosis, and whilst it is likely to have an effect on my fertility, I needed to get back to ‘me’. Become myself again. Have a clear head and finally be in control of my emotions. As the GP would practically refuse to stop my treatment, I went to a sex clinic – and then I was free.

It took a good couple of weeks for the hormones to wear off, but I could already feel the difference. I slept better, as I no longer had nightmares, my communication skills improved and I started to feel truly happy again. And that would have been the perfecte ending to the mental health nightmare of nearly two years… but the physical pain is  back.

So for now, I’ll have to live with the pain of this condition, and keep going for scans, and maybe have more surgeries in the future.

But it’s not the end of the world, and it’s surely not the worst condition to live with, I just wish more people knew about it (and didn’t equal it to a typical period pain), so there would be less stigma and embarrassment to talk about it. Please share this and help to spread awareness!

How do I handle it?

Ha! If you want an honest answer, you should probably talk to my husband 😛

On a more serious note, here are a couple of things that help me manage the beast:

Telling people what’s up

I can’t stress how important it is to not be alone in this! Most of my friends are now aware, and they are a lot more understanding of the bad week of the month. I’ve also shared this with my colleagues, who are great support on the days I can’t physically make it to work.

Know what’s your relief

There isn’t a cure, and there isn’t a specific medicine for Endometriosis. There are a lot of different treatment plans, so the best thing to figure out what works for your. I’ve got strong painkillers and hot-water bottles, comfy pyjamas and everything I need to improve my comfort on the dark days. When they come, I’m prepared and ready, so it’s easier to bear!

Focus on the positives

It could be worse. It’s manageable. And in my case, I have a clear head, stronger mental health and I’m finally in a happy place.

 

Lots of love,

Po