Endometriosis awareness Month 2018: My Endometriosis Story

It is endometriosis awareness month. And because it is endometriosis awareness month, I thought it was the perfect time for me to put on my big girl pants, be brave, share my endometriosis story.

I started my periods when I was 11, and from the get go they have always been very painful, and heavy. I was put on the combined pill at the age of 12, after I had bled constantly for over a month. For anyone, that is scary and draining, but for a 12 year old, it is even scarier.

Once I had been put on the pill, after a few months, the pain, the heaviness of my periods and the length of my periods all regulated, and calmed down.

Things calmed down until I was about 15/16, this is when the pelvic pain started to get bad again, worse than before. I was frightened, as I had no idea what it was. I remember one time, sitting in A&E with my Mum for hours, in absolute agony, to just be dismissed by the doctors, saying well at least my M.E isn’t so severe I can’t leave the house. Even though I hadn’t even gone to A&E for my M.E.

After a year or so after the pain getting, my Mum looked into endometriosis on the internet, and it seemed so similar to what I was experiencing. So after this, Mum and I went back and forth to the doctors. They tried me on various different birth control pills. But these didn’t work. And didn’t offer me any relief.

Eventually, they reluctantly sent me to see a gynaecologist, who wasn’t helpful at all. I felt so deflated after that appointment, feeling like I wasn’t getting listened to. So I was back to square one.

At this point, I started researching endometriosis, and spoke to people I knew who had endometriosis, and discussed the steps I needed to take next in order to get a diagnosis. I saw one GP, who said she was pretty certain it was endometriosis, but she wouldn’t send me for a laparoscopy to diagnose it officially, because I was too young at 17.

I thought this was absolutely ridiculous, and I decided I wasn’t giving up there. I went back to the doctors many of times, and finally I saw a doctor who agreed to refer me for a laparoscopic surgery.

At the age of 18, on June 30th of 2014, I had my first laparoscopic surgery, which found small amounts of endometriosis, but they hadn’t removed it. I felt such a relief, to finally have some answers to my pain, but was confused as to why they hadn’t removed the endometriosis. After this, I was seen once by a gynaecologist, but discharged after. They told me that there wasn’t much endometriosis, so it shouldn’t impact my life, and I should just live with it. I felt so awful after this appointment, so deflated and so down.

I continued to try to battle it alone, continuing on the birth control pill. The pain got worse, and so the GP suggested that I try the depo-provera injection (the contraceptive injection). Unfortunately this didn’t help at all.

In December of 2015, after many disappointing gynaecology appointments, and with no one wanting to, or trying to help me, we decided to go private to see a gynaecologist. Unfortunately the gynaecologist that we saw privately wasn’t the most helpful, in terms of helping me with the endometriosis. But after an internal ultrasound, he diagnosed me with polycystic ovarian syndrome. Over the years, I had had many ultrasounds, I had had one only weeks before the private appointment, yet the gynaecologist I had seen on the NHS had said that the ultrasound was completely normal! It was definitely a relief to get an answer.

Fast forward to May 8th 2017, I had my second laparoscopic surgery, where they found a considerable amount of endometriosis, and adhesions. When I woke up, the pain was so bad, but it was a different type of pain, surgical pain. I had a catheter in when I woke up, because they had removed endometriosis from across the front of my bladder. I had oxygen on because my oxygen was low from the anaesthetic, and the drugs from surgery. I had to stay in hospital overnight, and it was honestly pretty terrifying.

I had a couple of weeks, pain free (apart from surgical pain), and I was so happy. I thought things were looking up. Finally a break from the pain from this awful disease.

But after 2 weeks, the pain returned, and worse than ever. And I still had surgical pain at this point too. I can’t even begin to describe how soul crushing this was, and is. Knowing surgery didn’t help me at all.

My recovery from surgery was very rough. My poor Mum had to take me to the GP, the out of hours GP, A&E, and the emergency gynaecology clinic. We didn’t think it could be the endometriosis causing the pain, and symptoms. Since it had just been excised. But the doctor at A&E, and the doctor at the emergency gynaecology clinic, both said that they thought the endometriosis was growing back already.

Now it is March 2018, and things are continuously getting worse, and we are pretty much out of options. I am have a pelvic MRI on March 9th to see if there is anymore Endometriosis anywhere, and to see if anything else is going on. I am also seeing a colorectal surgeon on March 13th to discuss bowel symptoms, which seems as though, from results of a CT colonoscopy, it could be endometriosis in my bowel. My gynaecologist has also said that she thinks that I have adenomyosis, from my symptoms.

The symptoms I get due to endometriosis are heavy periods, pelvic pain, pain in my uterus, pain in my ovaries, pain in my Fallopian tubes, pain in my flank, lower back pain and discomfort, pain in my hips that radiates up my sides, bowel pain, rectal bleeding when on my period, frequent diarrhoea, swelling and bloating which results in my looking heavily pregnant, feeling like I have bricks weighing my tummy down, feeling of bleeding internally, nausea, pain across my lower abdomen, pain that radiates down my legs which goes all the way into my feet, throbbing in my pelvis, lower abdomen and legs, buzzing and tingling in pelvis, lower abdomen and legs, numbness in legs, sciatica type pain, pain in bladder, frequent need to empty bladder, and pain while emptying bladder. I’ve probably left some symptoms out, but this is the majority of them. My pain and symptoms get worse the week before my period, and during my period. But the symptoms are constantly pretty severe.

Endometriosis is ruining my life, it’s taking my life over, it is truly debilitating, and affects most aspects of my life. I have to spend the majority of my time led in bed, or led on the sofa, because being sat upright, or stood up, makes the pain worse.

So there you have it, my endometriosis story, if you’ve made your way to the end, congratulations haha. I hope I haven’t sent you to sleep! Remember, endometriosis is so much more than just a bad period. 1 in 10 women have endometriosis, I am that 1 in 10.

Love and light,

Soph Ellie xoxo.

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