Piper Nuelle

So you may or may not know that I have endometriosis… Stage four. Endometriosis is when tissue similar to the lining of the womb grows elsewhere in the body. It has been likened to cancer in the fact that it spreads to other areas of the body, but it is in fact not a cancer. My endometriosis had spread all over my bladder which I had surgery for before a few years ago but it didn’t fix my problems it just came back. It also spread all around my womb and ovaries causing my womb to twist and pull on my back ligaments. My right ovary was twisted and stuck to the back of my womb which also caused a lot of pain. I had been on the Zoladex injection to make the endo shrink but it was essentially still there just dormant and it gave me a bit of a better life, less fatigue, less pain and no periods so I had no flooding for a while… to me, I had a life… but you can only take Zoladex for so long before they take you off it due to bone density worries and of course I began to panic!! I didn’t want the chronic pain, chronic fatigue and anxiety to all come flooding back. The NHS didn’t want to know, so I had to find a way to pay and go private… luckily for me I had that as an option as I know many don’t. But I have waited years for this. I finally met a surgeon who agreed to it and she helped me discover that the NHS had gaslit me. They told me my MRI I had early on in the year was normal and then they no longer bothered to contact me. My new surgeon explained that an MRI on Zoladex would show no endo because the injection suppressed it. But she said my MRI was far from normal… She was the one who explained all the twisting inside. So she booked me in and almost a month later here I am, sitting, rather a little sore in my hospital bed, writing this. I finally had my hysterectomy!!!

Obviously an operation this big means a few days stay in hospital so I had to pack a small suitcase. But what did I take with me;

• My suitcase was small, one of the ones that would be considered hand luggage on a plane. Nothing bigger as I wouldn’t need ‘that much’.
• Two sets of pyjamas. Only two because the first day I was in bed in hospital gowns with a catheter fitted to help me pee. And they said they didn’t want me to ruin my own clothes I should ruin their gowns. So after on the second day I could finally shower and manage to put on my comfy pjs.
• Two pairs of large comfy knickers. Even though I no longer had a womb and would no longer have periods I still needed to wear pads for bleeding post op and needed knickers to do this. But they wanted larger ones than normal to accommodate the swelling from surgery.
• Pack of period pads / sanitary towels. Because although my womb is now gone you spot and bleed a little due to all what has happened inside.
• Toiletries – such as; shower gel, shampoo and conditioner, wet wipes, travel toothbrush and toothpaste, face moisturiser because hospitals dry your skin out, mouth wash and deodorant.
• Hairbrush because you need to brush your hair.
• Pair of socks for travelling home with, although they do give you lovely and fancy anti-clot stockings to wear too.
• Charger for phone and devices.
• And books!!! Of course I brought books with me. The books I chose to bring with me were, ‘You’ve reached Sam’ by Dustin Thao. And ‘The Boyfriend’ by Freida McFadden.

I also took a magazine all about the perimenopause and the menopause with me because… I would now be essentially changing from a medically induced menopause to a surgically induced menopause which would mean at the ripe old age of 35 I was now going through the menopause!!!

I of course took too much to read and only read some of the magazine and one book which was ‘You’ve Reached Sam’.

But I will do a book review on this one very soon. But I always say I would rather take too much than too little. I would hate to sit there for days bored because I only took one book instead of two.

Lucky for me my surgery went well. My hysterectomy went without a hitch ‘Touch Wood’ and she did find some more ‘old’ endometriosis as she put it, on my right side that she had to laser away so it didn’t regenerate when I come off the Zoladex later this month. The rest of it she took out with my womb and just took out any more she could see. There is a chance it may come back, a hysterectomy is NOT a cure for endometriosis but for some it can help with some of the symptoms and for me it was a no brainer.

Of course I am a little sad my baby making parts are gone but at the end of the day they stopped working properly and I couldn’t have anymore due to my endometriosis. I am lucky that I had kids really young, if I didn’t I wouldn’t have had kids. I was 20 when I fell pregnant with my first and even then me and my husband had tried for 9 months to fall for her. I had my second at 24 which I had minor complications through out and even when I gave birth.

Whilst I am a little sad that we couldn’t have a larger family I thank my lucky stars I could have the two I have and I appreciate what I have because I know endometriosis can destroy others lives and make it so they can never have children or they struggle so much.

More needs to be done to understand this disease because it is not just painful periods, it is;

• Constant bleeding sometimes weeks and months on end and even flooding where you constantly bleed through your clothing
• It is migraines and headaches
• It is chronic fatigue and brain fog
• It is back pain, pelvic pain and even pain all over your body
• It is inflammation
• It is painful to pee and blood when you pee
• It is hard to poop and blood in your stools
• It is like long sharp nails clawing at your innards and scraping down
• It is painful during and after sex
• It is hair loss
• It is weight gain that you cannot lose
• It is the inability to exercise because when you do the pain is unbearable
• But it is also people undermining you, doctors, family and friends gas lighting and not believing you. It is broken relationships. It is loneliness and learning to live alone and with no friends or family. It is… depression and anxiety because you are in pain and no one believes you and no one helps.

There are so many conditions out there that cause people to be in pain but when it comes to conditions like endometriosis and PCOS, because they are women’s health diseases they are considered laughable and all in your head. More things need to be done to treat and also look after the women that suffer. And one day I truly hope that these conditions are taken more seriously especially as more and more women are speaking out about their endo journeys.

I hope you enjoyed my blog post and I hope it has helped someone out there like me. Take care, xo Piper xo