Endometriosis Awareness Month

I haven't written on this blog in over a year but today I felt I needed to. Seeing as March is Endometriosis Awareness Month, I thought it would be a good time to make some noise and get some things off my chest about this crippling disease.

What is Endometriosis? 

Endometriosis is a chronic condition where tissue, similar to the lining of the uterus grows outside the uterus, onto places like the ovaries, fallopian tubes, bladder and bowel. In some cases, it can reach other vital organs too, such as the kidneys and lungs. In severe cases, organs become so hugely affected that they need to be removed. 

The condition can cause immense pain for those who have it. Think of the worst period pains you've ever had, then times that by ten. That is how I feel 80% of the time. Its debilitating. 

There is no cure for this disease, nor is there any known cause. Those of us with the condition live off heavy painkillers, use hot water bottles until our stomachs are covered with burns, and may need regular surgeries to remove the endometriosis. Even hysterectomies are not guaranteed to stop it. It also can't be diagnosed without surgery, as it doesn't show up on scans. So getting a diagnoses is hard work.  

Oh, and did you know that Endometriosis also affects the immune system? Yeh...

My Story

I've been having symptoms of Endometriosis for YEARS! After my sister was diagnosed in her teens, I suspected it had it too as I had the exact same symptoms. It took one botched laparoscopy and a second successful one in 2019 to be diagnosed with severe endometriosis (stage 4). My gynaecologist found endometriosis growing around my left ovary, with the mass attaching itself to my bowel. I also had it on my bladder and pouch of douglas. It explained all of my symptoms, from my terrible period pains to my frequency to use the toilet (TMI, soz…). I was also told that it would affect my fertility and I've been encouraged to have children as soon as I can.

Great. 

Last month I had a check-up, following my surgery in June. I was having recurring symptoms so my gynaecologist gave me an emergency scan. My ovary is stuck again, indicating the endometriosis may have returned. As a result, I am back on Zoladex. This is a horrific treatment for those of us with endo. In simple terms, it puts us through a 'mini-menopause', to stop the growth of any further endometriosis. This should also help with the pain and keep me in check until my next surgery. I was on it last year before surgery as a precaution. In general, it does help with the pain, but the other side affects are horrific. Hot flushes, mood swings, crying at EVERYTHING... My mental health took a nose dive and I just shut myself away as much as I could. 

 I started the next round of injections today. You would not believe how big the needle is (take a look at the wiki page!) and how much it hurt. Part of why I'm writing this is because I need to focus on something other than the pain and let out my frustration that I have to go through this. But I will do what it takes to reduce the growth of the endo and ultimately reduce the pain I'm in.

This, and self-isolating because of COVID-19 should be fun. 

I can't illiminate the pain completely, but I'm finding new ways to cope every day, both physically and mentally. 

I'm trying to keep a routine as much as possible. I'm working from home, so I am starting and finishing at the same time everyday, ensuring I take my regular medications each day at the same time and taking regular breaks. I try to take a short walk at lunch each day, as exercise is usually too painful, but a little leg stretch and some fresh air does the trick. 

I've got a HUGE to-be-read pile which I am working on. I find reading takes me to a different place and really improves my mental health, so I'll take time each day to read, even just a little bit. (Follow me on Goodreads!)

I've also just started Skyrim (I may have had to get my partner to walk me through the start of it, but I've got the hang of it now!). Gaming helps me escape the real world and pass the time if I'm having a bad day, so I'm excited to sink my teeth into it. 

Obviously, there's the matter of social distancing now, which I am going to find really hard. I'm a house-cat, but the times I do leave the house really do help, even if it is just going to work. I'm going to try to see my family when I can, but keeping socialising to a minimum. My workaround is playing Dungeons and Dragons over Skype and actually making PHONE CALLS to people!!! Anyone who knows me knows I HATE talking on the phone, so this is going to be my biggest challenge! 

I just hope that with my new treatment I am able to manage my symptoms relatively well, as the chances of me having another surgery this year is now very unlikely. There are some really great communities on Facebook and Instagram where I can keep in touch with my fellow endo-sisters, so I know I'm not alone. 

If anyone is struggling with endometriosis, or think you my have it, I am more than happy to chat with you. I am in no way an expert, but after almost ten years fighting the sysytem to get diagnosed and proper treatment, I might be able to offer you some advice and reassurance. 

Just know you're not alone.

Love, Jade x