In coordination with Endometriosis Awareness month this March 2020 I am going to be telling my diagnosis story. I know I have talked about my Endo in many of my posts, but this is the real true and honest story of mine. I will also be sharing statistics, symptoms and other information, as well as giving links to the websites you might find useful to find more out about Endometriosis if you wish to.
Not only is this going to be emotional post, it is raw, and it could also be disturbing for others. I am choosing to share some pictures post surgery too. I will therefore by putting a Trigger Warning on this post, because I am showing pictures but also talking about things that may upset others.
Please don’t let this put you off reading it, I think people need to see what effect this horrible condition can have upon the body. The female body already endures so much, so to have to deal with this condition too, it is exhausting. I should know.
There was light at the end of the tunnel for me, so this post does end on a positive, but I do believe more people need to realise the repercussions of having this debilitating and incurable condition.
Please continue reading now as I tell my story of pain, loss and eventual diagnosis.
Endo and Me
I have a love hate relationship with my body. Sometimes I love that I have a fast metabolism, it keeps me slim and I’m generally quite fit and strong despite my thin frame and small bones… however the Endo side of me causes unimaginable pain at times. It’s a chronic and incurable illness that doesn’t just affect your period like so many ignorant and uneducated people might believe. It is so much more than that because a number of things that happen to you can have a real negative affect on your life as well as your body. Let’s start at the beginning for me. I first had issues with my body when I was around fifteen years of age. I began getting unusual pain that I had to take medication for. All you could get at that age was paracetamol and ibuprofen tablets which were 200mg a piece and trust me; they barely touched the sides of my pain. As I got older I began having more symptoms, I didn’t know back then they were to do with Endometriosis. Except that whenever I sat in front of a doctor they tried to tell me it was anything and everything but that, it was never even mentioned. When I was seventeen I lost weight suddenly and quickly, I was tested for Thyroid issues and even Cancer! All tests came back negative and I tried to just deal with my awful periods and pains. Doctors were reluctant to explore further, so I let it go. At 19 I was fed up with the ridiculously heavy flow I had every month and the fact that I had no regular cycle, it was so exhausting and an anxious time. So after some persuasion on my part, I went on to a contraceptive pill. Regulating my cycle was a bonus of the tablets, and for the first time in my life I could be social with confidence. By knowing when things would be occurring allowed me to be at home with my hot water bottle and tablets when I needed to be.
When I was 25 I came off all medication in the hope of starting a family. Little did I know that all the pill had done for years was masking other symptoms of my Endo. When I had been off it for just six months I had such pain that it began affecting my everyday life. I cancelled social time with friends and family, I ended up avoiding things that I usually enjoyed because I was worried about being unwell in front of people. This caused me to suffer with anxiety, and that never went away, it just got worse as years went by… and so did my pain.
When I failed to conceive for years I went to my doctor and had various tests, blood tests for Thyroid, Hormones and Vitamin Deficiency amongst them. Then when everything came back with no issues and my pains were so bad that they affected me daily, I began seeking more answers. Endometriosis or Polycystic Ovary Syndrome was just two conditions that female members of my blood line suffer with. I must have told this to over a dozen doctors over the years. There are correlations between female genes that are often ignored. It wasn’t until I finally conceived after three years of trying, and then I tragically miscarried, that I ended up in Accident and Emergency every four weeks when I got my period, and I began getting sussed on this…
When I lost my baby I blamed myself and it made me depressed. I was so unwell physically I just didn’t know to what extent just yet.
So to help my state of mind I kept a diary, what I ate, what I did daily, what my pains were and where, I kept track of my cycle down to the hour and tried to make sense of it all. I looked for answers online and anything that told me what it could possibly be. Going in and out of hospital with no answers was exhausting, and it was wasting so much time too.
One afternoon I had written out all of my symptoms and matched them to the condition Endometriosis. All I wanted was someone to take me seriously and try and attempt to diagnose me. Instead I was in hospital nine times over the course of eighteen months. I had one MRI, seven ultrasounds, I went on a drip three times due to dehydration, I was given antibiotics twice, I had examinations with five internal swabs checking for infections… Nothing came back with anything concrete. On an ultrasound they told me that I had had a cyst that had burst. That time I ended up almost passing out in the bathroom at home from the pains, I was vomiting and couldn’t keep anything down. A&E was the only option when I had so much blood loss and was so sick from pain that I became dehydrated and needed a drip.
When I was admitted during the period that came after I lost my first child it was clear that I was incredibly ill and needed help. I had doctors who wanted to take me to surgery to check my appendix and my bowel, but I kept telling them it was Gynaecological. After I had a complete meltdown and shouting because I was kept nil by mouth for three whole days while two doctors argued over what to do with me, a lovely doctor who was a cancer specialist offered to do a basic laparoscopy on me that evening, to simply look inside me and take some pictures, so I could be passed on to whichever department I needed to be. This was the turning point for me; it was the start of my actual diagnosis. Over thirteen years since my first unexplained pains had begun…
It was severe. I was diagnosed with Stage 4 Endometriosis, with a mass the size of a Tennis Ball attaching my Left Ovary, Bladder, Bowel and Womb to each other. My organs were all pulled off to the left side of my body, which was contributing to other symptoms that I was having, including bloating, bowel pain and problems, pain when I had a full bladder and pain during intercourse. The pictures that were taken inside my body showed extensive Endometriosis, like a mesh of tissue, thick cobwebs and various sized pockets of blood. At this time I had been ill for a long time, and I had lost weight, I was a size 6 and I didn’t feel like me anymore. The pain was all I knew some days. Having a diagnosis was like a light bulb had been turned on in my darkened room…
I was lucky because there was an Endo Gynaecologist Specialist at my local hospital. After speaking with him he agreed to operate, to try and save my left ovary. I wanted to be a mother so badly and he understood this. We also agreed to check for reasons why I couldn’t carry a baby thus far, four years of trying and a miscarriage was an indication things weren’t right. And he wanted to find out if it was all down to this Endo and the position of my organs. He would also do the dye test on my Fallopian tubes while I was under to see if they were clear of Endo too.
So I was popped onto his waiting list for surgery twelve weeks later. Every day was hard during that time, it was a blur of medication and hot water bottles and I had to give up work and go off sick after trying and failing to do my shifts and ending up just collapsing. After dealing with the chronic pains during that time, having hardly any sleep because I couldn’t get comfortable and my constant anxiety and nausea… I finally went in for my surgery…
The day afterwards I felt like a new woman, this man and his team had literally given me my life back. It was bad, but they had fixed me for now… I had had the Endo mass and tissue removed, then my organs gently coaxed back into place, my tubes flushed, my bowel that was damaged had a resection, and my left ovary was carefully saved. I could feel that constant pressure was gone; there was no more dull pain in that area. In fact recovering from the surgical incisions wasn’t anywhere near as bad as the pain I had lived with every day for years. I stopped taking pain medications three days after I got home from my surgery, because I felt like I could deal with the pains I was getting, which were less than ten per cent than what I was used to. How mad is that?
The worst thing about the surgery for me was the gas, it fills every part of your body as it absorbs and fills the spaces between your organs, it can be very painful until it’s gone. I had to drink so much peppermint tea to help with the bloating! Below is my abdomen after surgery, you can see I’m swollen and bruised and you can see the three incision sites.
The worse thing about having Endo is that it has stolen friendships away from me, and it put strains on other relationships too. People don’t understand how you can look so “well” on the outside but feel incredibly ill on the inside. Pain is something your body gets used to but it is the fatigue that most people struggle to deal with. Sometimes I would visit family and I would be talking one minute and falling asleep the next. Even after my surgery, although I didn’t have the same pain levels as before, I was still keeping up with the feelings of being tired, and my periods were exactly the same.
Did you know that Endometriosis also causes a whole range of other issues? I had over half of these when I eventually got diagnosed. Most women get told they have painful periods and IBS. Most of us only have these things because we have Endo. Here is a great diagram that was shared on the social media Endo pages earlier this month outlining most of what women like me have to deal with, sometimes these are daily symptoms, some are infrequent but they still occur, often brought on by hormone changes and cycles.
Endo Warrior is a term I use often to describe myself, because some days it feels like a battle just to get through the day. I am extremely lucky because I got the time to recover from my surgery, both body and soul searching too. Then when I was ready I had to do IVF in order to have my son. He is my entire world and I would be lost without him. I look back at all that I’ve been through and I am proud that I never gave up, despite everything.
If you want something in life and you have to work harder to get it then it makes it all the more worthwhile. I overcame a needle phobia and dealt with my Endo pain during my IVF treatment. But I would do all of it again if I had to. Being a mother is one of the most incredible and rewarding things I have ever done.
I realise some women have too bad a diagnosis and never get the chance to be mothers because of this condition, and that makes me sad. I class myself as one of the lucky ones.
To anyone out there who is suffering, make your voice heard. I once said to a friend that “Living a life in pain is like letting pain decide your life for you” and I got to a point where I just couldn’t live like that anymore. If your pain is ruling your life, then perhaps it is time to do something about it. Find a Doctor willing to listen and willing to take you seriously. Keep a diary, show that to a specialist if you’re lucky enough to get referred quickly.
Endometriosis has cost me so much in my life already, and because there is no cure I deal with those uncertainties for my future every single day. I still class myself as one of the lucky ones, I still have all my organs at the moment, and I was able to carry and have my son. I love being a mum. I try not to let my pain get in the way of that. As my son gets older I will be able to explain why mummy cannot bend and play today, and I will come up with other things for us to do together on those, my bad days. But I know it won’t stop me from being the mother he deserves. Of that I will make sure.
Thank you for visiting Severn Wishes today. If you would like to leave a comment please do so, I hope that my words help even just one person to stand up for themselves, to explain to a doctor that you want answers, that you deserve to live a life without pain. Stay strong.
✩ Sabrina ✩