For those of you that read my blog, you might notice that I haven’t done a personal blog post before. Normally I talk about digital marketing/PR campaigns. However, as it is endometriosis awareness month, I thought it was the perfect opportunity to share my story and raise awareness for the condition on my blog.
You might be sitting reading this and thinking ‘what is endometriosis?’ Well let me help you answer that question ..
What is endometriosis?
Endometriosis is a condition where tissue that grows inside the lining of the womb starts to grow in other places in your body. These cells that grow react to the menstrual cycle each month and also bleed. However, the blood that sheds in the different parts of the body cannot leave. As you can imagine, this causes pain, scar tissue and inflammation, just to name a few.
How are you diagnosed?
The only concrete way that endometriosis can be diagnosed is through a laparoscopy. Are you wondering what that is? In a nutshell, a laparoscopy involves a small telescope with a light (laparoscope) inserted through the belly button. The laparoscope will normally have a camera so that the surgeon can see inside the pelvis and the body. They extend the abdomen using carbon dioxide so that they can see the organs and look for endometriosis.
What are the symptoms?
The most common symptoms have been listed by Endometriosis UK below.
This month, endometriosis UK are asking those who suffer with the condition to help #EndotheStigma on social media and I thought that I would contribute by sharing my story.
My endometriosis journey so far
Before I start to explain my experience with fighting for a diagnosis, I think it is important to tell you all that, on average, it takes on average 8 years to be diagnosed. 8 years of debilitating symptoms and doctors fobbing you off because they can’t find something wrong with you! The timeline needs to be shortened. It is not acceptable for women to be waiting 8 years for a diagnosis and its not ok to say that the condition is ‘just a bad period’
I first started with very painful periods when I was 13. When I say they were painful, the pain used to keep me in bed for a couple of days because I couldn’t move with it. I just thought the pain was normal and just accepted that I would be like this for a month each week.
It wasn’t until I was about 15 that my symptoms started to deteriorate. I was in so much pain, not only on my cycle, but every day! I had trouble going the toilet, so much so that I thought something was wrong with my bowels and kidneys. I was always at my GP surgery hoping that they would be able to help me but all they did was put me on strong painkillers.They did an ultrasound and found absolutely nothing wrong. Thats when I lost hope that I would find out what was wrong with me. GPs were telling me that ‘it was all in my head’ and I started to believe them. Now I know I shouldn’t of believed them!
This post that I saw recently (above) really struck a cord with me and it is true. You need to trust yourself, that you know that something isn’t right and reach out for a second opinion. That’s exactly what I did when I was 15.
In the hopes of being able to get a second opinion, I booked an appointment with a nurse and she ended up referring me to both Paediactrics (because I was still classed as a child) and Gastroentererology. If it wasn’t for my consultant in Gastroenterology, I wouldn’t be where I am now. He was the one to tell me that my symptoms sounded like endometriosis and that he is fairly certain that I had it. Finally, I was able to breath a sigh of relief! Someone finally believed that there was something wrong with me.
I won’t go into depth into my journey in the past few years but it has involved countless doctors and hospital appointments to try and get to the bottom of my endometriosis. At the moment, I haven’t been able to get an ‘official’ diagnosis. However, I have recently been referred back to Gynaecology to have a laparoscopy for a confirmed diagnosis.
My top tips for anyone in my situation
1. Go to your GP if you think you have endometriosis
Always go to your GP in the first instance if you feel like your period is not normal. They can always refer you to a Gynaecologist who will have a better idea if you have endometriosis or not.
2. Don’t take NO for an answer
This is a really important tip. If you want to get referred to a specialist or want a second opinion, don’t take no for an answer! Remember to fight for yourself to make sure you can get one step closer to a diagnosis.
3. Join a support group
I joined a support group on Facebook for endometriosis warriors and it has really helped me. I think it is a great idea to join one because you get to ask about symptoms if you haven’t been diagnosed yet like me, get support on your journey for a diagnosis and it also helps you know that you are not alone!
Why did I write this post today?
I am not writing this blog post for people to feel sorry for me. I am writing this to bring awareness to endometriosis itself. 1 in 10 women suffer from endometriosis and the condition is still not very well known. It’s time to raise awareness for the condition so that young girls know that they could have endometriosis if they are suffering.
Thank you for reading my blog post this week. If you are are interested in learning more about endometriosis, I recommend following the #EndoTheStigma campaign that Endometriosis UK are running.