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1 in 10


Hello!

Welcome to my weekly blog installment. I thought rather than talk business or art, I'd talk about something more personal. March is Endometriosis Awareness Week and so it seem apt to talk about this today.

I AM 1 IN 10.

1 in 10 women suffer from Endometriosis. That's equates to approximately 176 million women worldwide!

What is it?

Endometriosis is a condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body such as; the ovaries, fallopian tubes, inside the tummy, and in or around the bladder or bowel.

What are the Treatments?

There is no cure for Endometriosis and on average it takes 8-10 years for someone to get diagnosed. As there is no cure, the treatments available all mask or ease symptoms but it doesn't go away.

Currently on offer as treatment the options are:

Painkillers

Hormone Medicines/Contraception

Surgery

Diet

What's my story?

I've always had painful periods. But as that's all I've ever known, to me that was normal. In the past couple of years the pains had become worse and it was only having talked to friends and family about the pains I was experiencing that I thought I'm not sure this is normal.

It could be excruciating to the point where I couldn't move, I'd be stuck lying down or sitting down and in so much pain I couldn't get up. It would happen at no particular time, and was so painful I'd be reduced to tears.

I'd heard of Endometriosis and rightly or wrongly googled the symptoms - it was all pointing to this.

So I visited my GP. Yes, he thought I had it too.

I was referred to the hospital to have ultrasound scans and to see a gynae. From everything I have read and been told, you can't properly diagnose Endometriosis unless you have a laproscopy (key hole surgery to look for Endometriosis) but on my ultrasound two large cysts were showing, one measuring around 10cm. I was told there that I would have to have a laproscopy and these cysts would need to be removed. The Gynae at the hospital then referred me to an Endometriosis specialist and surgeon at another hospital.

I panicked.

I've never had an operation fully under anesthetic, and I am not the worlds biggest fan of hospitals either. So this wasn't ideal! I spent the next month whilst waiting for my next appointment researching natural ways to deal with Endo. I completely changed my diet - cutting out gluten, dairy, red meat, soya and eggs (and anti inflammatory diet) and I was trying everything naturally I could to help - using magnesium spray and having epsom salt baths to ease the pain, castor oil packs, massages. If it was natural, I was trying it. I suppose out of desperation to not have an operation.

Upon meeting this specialist, he informed me that yes I would have to have the operation, I explained the natural methods I had been trying, but he was adamant that my cysts wouldn't have shrunk and I would need the operation. I think I had been a little blasé about the size of the cysts, especially the large one. He explained the risks of rupture if it was to be left, but also the risks with the operation that because of the size of the cysts there was a chance of losing one of my ovaries. He said that after the operation I would need to go on the contraceptive pill to hold the symptoms at bay. Again, this was something I was reserved about. I haven't taken the pill for about 5 years because for me it causes severe anxiety and feeling so blue, plus as you may have guessed I'm not a huge fan of medicines.

Anyway, I digress. So yes it was looking like I would need an operation, but I was so focussed on dealing with things in the natural way that I asked for one more scan to check to see if the cysts had shrunk - and if they had I was convinced I wouldn't need the operation.

So, I had another scan.

But no change. And the cysts had grown.

That was the confirmation needed; I had to have the operation.

Role on June 2017 and the operation.

The operation.

I won't go into huge depths about the operation. It wasn't my greatest experience, and I cried the whole was walking to the operating theatre as I really did not want this to happen. But a few hours later it was done.

They had removed the cysts and found endometriosis tissue elsewhere, which was removed too. It was a slightly longer operation than planned because of the tissue they found, but they were confident they had removed it all.

I woke up in the recovery room, although everything was so swimmy. I vaguely remember someone saying my name, and I dozed in and out from then on for a while. I can picture going in a lift, but then falling asleep again, and then waking up in a room with Chris, Mum and Dad. The surgeon came in to explain how the operation went. I remember asking him if I had my ovaries (to which he replied yes) and then I fell back asleep. I'm not sure when I finally came round, but when I did I was told I'd had a catheter put in (the weirdest experience) and I had my legs in a strange compression contraption to prevent DVT. I also reacted to the anaesthetic and it made me really sick afterwards. Because of this, I was really weak and kept being sick. It took a couple of days to finally come round, to be able to eat something and to actually the get up from the bed and walk (which was incredibly painful and uncomfortable).

I'm not putting this part in for sympathy, but more to show that this disease isn't just a painful period. It's not just the monthly pain, the bloating, the soreness and all the other symptoms that comes with it - it's the operations (a lot of people have numerous), the recovery, the anxiety and the worry. I would say I am a strong person - physically and mentally, but this really tested me. After the operation it took me a month to recover, and 6 months to truly feel better and strong again.

I was put on the pill after my operation which I took for a few months, but it increased my anxiety and for me that is a no go, so thankfully my specialist supported me in not taking this.

What I do now:

I'm having regular scans to monitor my cysts which is great but because I am not taking any hormone medication I know there is a risk of these and the Endometriosis tissue coming back.

I do follow an anti inflammatory diet when I can - cutting out gluten, wheat, dairy (apart from goats cheese), red meat and soya. But sometimes I don't as I just want to eat some milk chocolate!

For me, though, eating this way has reduced my bloating and my pain is minimal. I also take certain vitamins, have regular epsom salt baths and exercise. But I'm not a doctor, it's just that doing these things has worked for me for the past 9 months following my operation. And this being said, I do still get pain every period, and twinges most days - but compared to this time last year it feels like hardly anything. But the biggest and hardest 'treatment' for me is to stay positive. I know, that in doing this then I can and I will be beating Endometriosis.

I have to be honest and say I was incredibly lucky. I was referred quickly throughout, and have been lucky with the Doctors who I have seen - they've all acted quickly and listened to me as well. But as I mentioned earlier, this is not the case for most. It takes on average 8-10 years to be diagnosed and the pain and suffering that some women go through is absolutely horrendous. This is such an unknown disease yet it affects so many women. It's because of this I've decided to write this blog about my experience.

If you think you have Endometriosis, or suspect someone else might do - do go to the GP. There's great support at Endometriosis UK as well as brilliant groups on Facebook and on Instagram too.

Personally I follow

@theendo.co

@endoeducation

as well as lots of inspiring Endo Sisters!

Lastly, one of my best friends sent me this in a text just after my operation - it really helped my recovery....

If you got to the end - thank you, I know it's a little word heavy! And next week, I'll go back to art and painting again with lots of images - promise!

Rachel x

#endometriosis #personal

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