Today’s blog is written by Becky. You can read more on her story at Endo-Aware.
My name is Becky and I am 26 years old recently diagnosed with Endometriosis. I am sharing my story in the hope that I can help raise a little more awareness on this awful condition and help other people who might not know they have it.
Looking back, I have suffered with Endo symptoms for years, starting from quite a young age. I was always complaining of tummy aches and not feeling well. As I didn’t have many symptoms to begin with I just ignored them and thought it was nothing.
They gradually got worse over the years and especially the last few years, where I have known something is definitely not right, but each time I have been to the doctors or hospitals and many scans and tests later, I get told it is nothing to worry about and is just ‘normal’
It was getting to the point where I was sometimes doubled over in excruciating pain which came with no warning, where I was physically sick, where I felt so bloated I was barely eating, and just felt so exhausted all of the time, I couldn’t understand it – and neither could the doctors.
We have a little boy who is 4 years old and would love nothing more than to have another, but this is proving to be difficult. Our first didn’t come easy either but after a very long wait we got there, I did have a few problems during that pregnancy and thinking back now I do wonder if any were related to this – who knows.
When seeking doctors advice on trying for our second, I feel we don’t get taken seriously, I mean we have one so what’s stopping us having another?
On Christmas Eve 2017, I woke in the morning to see to my son and out of nowhere had the most intense pains in my stomach, it spread to my sides and my shoulders and I was being physically sick. I could barely walk and painkillers were not helping at all. We called out of hours who said it sounded like a ‘sick bug’ and if nothing was helping by later in the day then to go to A+E.
Sure enough, later in the day nothing was happening so I went to out of hours doctors and this time was told that everything felt normal, and it was probably a water infection – I did not for one minute think this was right, but I took doctors advice and went home with antibiotics.
By Christmas morning, I could not bare the pain any longer so we called an ambulance and spent Christmas day in A+E – as the pain was mostly on one side by this point, they said it was likely to be appendix. They sent me for a CT scan to be sure and from here on things just got so much worse.
They had found a large growth on my ovary which was measuring around 8cm and it looked like there was internal bleeding, they told us they would need to operate to remove this and there was a high chance this could be linked to ovarian cancer – I have never ever in my life felt SO scared.
They said they could do further tests to know for sure if this was the case, but due to it being Christmas there would be a few days wait for the results – and regardless of the outcome, it would still need to be operated on.
There was also a high chance that I would have to have my ovaries taken, which is heartbreaking when all you have been thinking about is having more children.
I just wanted to get it over with so asked to just go straight for the operation, my family had been called, and within half an hour I was in theatre.
Around 5 and a half hours later it was over with. They were confident it was not the above but had taken a biopsy to be sure. But they did find a lot of Endometriosis.
Endometriosis is a condition where the tissue that lines the womb is found outside the womb.
This had stuck my ovaries to my womb, bowel and other organs – I was extremely lucky that they managed to remove as much endo as they could, put everything back in place and saved my ovaries!
Even though the few weeks after this were really hard, I was very poorly and didn’t make a very quick recovery, I just felt so grateful and relieved that it was over and that they had treated what was causing me all of that pain.
The biopsy came back as benign so I was feeling well and truly relieved!
I met with my consultant a little while later, who explained in more detail what was involved with the operation, I had quite a few questions that I wanted to ask, as even though I had been diagnosed with Endometriosis, I still didn’t really know anything about it. I thought this surgery had cured all of my pains and would now really help us with having another baby – but I was wrong, Endometriosis cannot be cured, I may still experience the same pains as before and there is a high chance that this could grow back again.
Some women who do experience stage 4 endo do become infertile, but they are unable to tell us how high our chances are and have said we may have to undergo treatments for this. It is likely that I had this during my first pregnancy but not to this extent.
She also told me that due to the extent of my operation, that if further treatments are needed I would likely be sent to a larger hospital.
I came away feeling so deflated and scared. I sometimes wish I had not been diagnosed, as I was able to carry on and deal with it a little easier before – but now I am constantly worrying about what is to come.
Just over 6 months on and I still experience a lot of symptoms. I am trying to stay as positive as I can, and I am trying to learn as much as I can about this.
I am always inspired and feel less alone when I read other peoples stories, so I hope mine does the same for someone.
It just goes to show that there WAS a reason for all of my pains over the years, it wasn’t OK and it wasn’t in my head, there IS a reason why it is taking longer than usual for us to be able to conceive naturally – so don’t give up, we know our bodies better than anyone else, and we know when something isn’t right.
It took me approximately 10 years to get an answer and I will have to learn to live with this for the rest of my life. We MUST find a cure.
Lets put an end to Endometriosis!
Follow Becky on instagram and find her blog here.