Who knows what 1 in 10 means? Do you know that 1 in 10 means 176 million women worldwide has this disease and I am one of them! This disease is Endometriosis. I was expected to have Endometriosis just over 4 years ago when I went through my first operation. Just into my 5th year I have had 5 trips into the operating theatre. Please read this post and share this to everyone. It’s about time this disease is known about and please help me share awareness!
Have you heard of endometriosis before? Do you know someone with it? Just imagine if you were with 9 other of your girls, just picture it this way 1 of you 10 would have this! Isn’t that crazy! Yet not many know about this disease and how it affects day to day life for 176 million women daily.
I will now explain a bit about endometriosis and how it does affect me. My life can be a typical 28 year olds but it can also make me feel like in 98, old and crippled.
Endometriosis is typically known to the gynaecology area. Or shall I say should be known to gynaecologists. Symptoms include pelvic pain, back pain, period pain and cramps, infertility, heavy periods and clotting, pain during ovulation, pain during and after intercourse, extreme fatigue, insomnia, low energy and nausea.
As any women, we all have periods. Well not all women just bleed out during the cycle but women with endometriosis bleed like normal but they also bleed internally sticking organs together and causing havoc in your body. Chocolate cysts, twisted tubes, blocked tubes and sticking gluppy black stuff to your body. This is endometriosis and this is what causes the pain we live we daily.
There is no cure for endometriosis, it can be removed or as much as possible, but naturally the period comes monthly this will return or appear in new places immediately.
Some people will tell you to have a baby or a hysterectomy but really who knows because even having a hysterectomy doesn’t mean endometriosis will leave your body forever. They could leave some endometriosis in your body and this will still cause you discomfort and pain. Having a baby would only mean the months of trying will allow your endometriosis to grow.
For me my endometriosis started or shall I say pain started 16th of December 2014. I was in agony, I went to the doctors and was referred to hospital where I had scans and then a laparoscopy in February 2015. This was a normal hospital and I was under a gynaecologist that specialises in endometriosis. You would think this ticks all the boxes but no. I came away from that operation none the wiser of having or not having endometriosis. I was just told to stay on contraception back to back to stop my period.
The night before I was meant to be flying to Menorca of September 2015 with my friend, I began to bleed, I was scared, not only because I was going away the next morning but for what my body was trying to tell me. In December of 2015 I had open surgery because I had an umbilical hernia. I now have mesh under my belly button to stop the hernia and they also cut half my belly button off because it looked to have endometriosis growing on the end. To this day I cannot tell you if it was 100% endometriosis on the end.
In 2016 I was still in pain of course the unknown it’s in your head pain came out. A lot I might add. I was back to the same hospital but a different gynaecologist. This time was told there has to be nothing wrong its in your head otherwise they’d of found it and confirmed Endometriosis. I had a in depth scan of the area and was told no nothing. I had a course of zoladex and was then referred to a pain management specialist. I ended up with a nerve block injection into my stomach of November 2016 under local anaesthetic. This then lead to another lot in February 2017. This went really wrong and I ended up having 5 weeks full sick leave and 5 weeks part time. Told to try Physio and exercises. Nothing really helped. By this point it was like its in your head deal with it.
In January of 2018 I fell really unwell. I went straight back to the doctors higher medication and blood tests. The same day as the blood tests I went straight from that hospital to A&E. It was time for the NHS to help me. My other experiences have been private. The dreaded 4 hours wait in A&E puts you off massively but when they don’t know where to treat you what to do etc its hard. Especially when I am trying to work each day and stay alive whilst I beg for help. I was given a shot of morphine and referred to gynaecology again. The NHS wait isn’t the next day its more like 5 months wait. I had my scan in February where the lady said my ovaries weren’t in line. Which to a non medical person who knows what that meant. But in reality it meant my ovaries had flipped right over and stuck back down in place. You can see now why I was in so much pain. How I walked I do not know.
By April I really had, had enough, I was high on tramadol 24/7 I went to work and stayed at my parents at weekends and that was my life from January to the time I got my operation. We decided to swap hospitals as the wait was too long for me. I was losing the strength to fight. I went to see the surgeon on the 10th of April and by the 23rd of April I was back on the operating theatre. This time they confirmed Endometriosis. You cannot believe how happy I was to have a diagnosis not that it’s a good one to have!
This is where we learnt a lot about Endometriosis. There is such a lack of knowledge of endometriosis, from doctors, nurses, surgeons and general people of the world that on average it takes up to 10 years to get a proper diagnosis. I am still not sure to what stage endometriosis I have. I now know that when the time comes and endometriosis causes havoc to my body I need to go to a endometriosis specialist centre. They have the knowledge (well I hope) I will know the stage I am and they have a team of surgeons who can operated on various areas to help you.
From what I have learnt a stage 1 of endometriosis can have the same pain as stage 5 and a stage 5 can have less pain than stage 1 all depending on the women and how it effects her. Though it’s commonly known to be on the uterus, ovaries, bowel and bladder endometriosis can affect any organ in the body from your head to your toes.
I have noticed really that mine has to be mainly my left side, when I am on a reformer bed at pilates my left foot starts to cramp. I get this there and nowhere else. So we believe it to be connected.
I have had bowel trouble since I had my last surgery, firstly from what we thought was tramadol but now I am most likely thinking endometriosis. Not only that I have continuous heartburn even with taking heartburn medication. I spoke to the doctor last week and they have said it could possibly be your endometriosis. I have stopped all medication to see if it helps but nothing does. Back there tomorrow for a referral to the hospital.
So after 1286 words I guess you can see why it’s so important to me to share the awareness, get this known to the world and give us a chance to get help sooner than we do now!
This is why I am pretty sure I am good at being strong, trying to live my life as good as I can, but I am also weak enough sometimes just to lay in bed all day and not move. It wears you out. I #fightlikeagirl and I work full time, I have a life. I guess this is why positivity and self care is so highly rated in my world.
I need your help and by that I mean I ask you and thank you to share this. We need to spread the word so the world can become more aware of endometriosis and what its done to 176 million women in this world. We need doctors who know what they are talking about and not push you from pillar to post and we need the correct treatment to give us the better life we deserve!