My Life With Endometriosis

How is life affected by a diagnosis of endometriosis?

March is Endometriosis Awareness Month and, as a sufferer, I wanted to write a blog post to help raise awareness and understanding.

As I’m typing this blog post, reflecting on my own personal journey with endometriosis, I’m in pain. My abdomen feels like it’s contracting and twisting whilst being stabbed with a hot poker, my lower back is on fire and I’m just exhausted. I’ve felt this way, more or less, for 15 years. It’s part of who I am.

Before I get going with the short version of my own journey, I want to give you some facts and figures about endometriosis.

Endometriosis is the second most common gynaecological condition in the UK, affecting 1 in 10 of the female population which equates to around 1.5 million women. There is no known cause and there is no cure. Endometriosis costs the UK economy £8.2 billion per year, in healthcare costs and loss of work. The current average wait for a diagnosis is 7.5 years.

The symptoms are varied, so please have a read of this information. Personally, I have 16 out of the 19 symptoms listed, but thankfully not all at the same time!

My Story

Let me take you back to 2002. It was my first year at university and I was living away from home. I felt fairly stressed and so when I started to get regular, debilitating, stabbing pains in my stomach I put it down to not eating enough and always being on the go. I thought the backache I always had was from carrying heavy books and files, and sitting on small furniture when on placement at primary schools.

Eventually I decided I needed to see a doctor and so began about 6 months of back and forth with the university’s GP practice. First they said I needed to change the contraceptive pill I was taking. Then I was treated for IBS. Then I was accused of having an STD and then finally I saw a sympathetic female GP, who happened to specialise in gynaecology, who told me it sounded like endometriosis. I’d never heard of it. I couldn’t even pronounce it.

I remember taking a book out of the library to find out more about it and I just cried. I read that this was a disease with no cure. That I would miss a lot of time from work, assuming anyone would employ me as a teacher in the first place. That I would need surgery just to get a diagnosis. That I would most likely never have children.

Endometriosis

I had my diagnostic laparoscopy in April 2004. I remember the registrar being so dismissive of me “You know we won’t find anything, don’t you? You’re too young to have this” and I remember being terrified of the general anaesthetic. (I still am, 6 surgeries on).

I came around from the surgery to be told that I had endometriosis which had been treated with diathermy and that they had also removed a large cyst from my right ovary. I was sent home that day with some paracetamol and absolutely no information about my healthcare going forward.

I rang up my surgeon’s secretary a week or so later to ask whether I needed further apppintments or something and she told me that “he removed it all so obviously you’re ok now”. After demanding a follow up appointment I was prescribed a medication which put my body through a false (reversible) menopause.

Discovering Endometriosis UK (then The National Endometriosis Society) was such a lifeline for me after that diagnosis. I used the message boards to chat to others and I found out about the Birmingham support group.

At the first meeting I went to, I met a wonderful gynaecologist. He changed my life. I switched hospitals to be treated by him and over the next several years underwent various surgeries which involved him cutting the endometriosis out, rather than lasering it. At that time, he was one of very few gynaecologists performing this treatment.

After that first meeting, I ended up getting more involved in Endometriosis UK; I trained as a support group leader and co-ran the Birmingham group for a while.

I suffered with endometriosis throughout university to varying degrees, and with that came various challenges. I had to have deadlines extended for a few assignments; I missed quite a few lectures; I missed days at Teaching Practise and had to make them up; and my social life suffered. I was often in pain and couldn’t go out and I very rarely drank because it made my pain worse. I’m lucky that I had a very supportive boyfriend all through university.

Endometriosis affected my work life too. I’ve worked alongside some very unsympathetic colleagues and heard them say things like “it’s only period pain”. I’ve taught a class lying on the floor because I wasn’t allowed to go home. I’ve sat crying in the staff room with a hot water bottle instead of doing my planning. I was warned about having too many days off sick. I almost passed out in pain once and then walked in on a colleague laughing to someone else about it. I was coerced into coming back to work a week before I was medically advised to after surgery.

The last surgery I had for endometriosis was August 2010. I was told that my endometriosis was severe, affecting my bowel and bladder as well. My Fallopian tubes were both blocked and none of the dye they use for the test got through. I was told that I needed to think about if I wanted to start a family because I had more chance of winning the lottery than conceiving without assistance. Andy and I had been together for less than a year at this point.

We made the decision to look into IVF. The IVF appointment and my follow up from surgery happened to fall in the same week and somewhere between the two, we discovered that I was already pregnant. Our second daughter was also conceived naturally a couple of years later.

Endometriosis did not go away during my pregnancies; if anything the pain got more intense. It didn’t get any better after having my girls either. Right now, endometriosis is back with a vengeance. I’m regularly in pain; my daughters are 3 and 5 and they notice. The only reason I haven’t sought any more surgery in the last few years is because of my daughters; I don’t know how my recovery time would affect us all. I’m seriously looking into a hysterectomy as a last attempt at freeing myself from this disease, even though I know it may not work. I’m 33 and I’ve had enough of this disease and the way it has crept into every aspect of my adult life.

Toria

If you would like to find out more about endometriosis, please contact Endometriosis UK, I cannot recommend their support, advice and understanding enough. If you want to reach out and talk to me about it, please do (although bear in mind I cannot give medical advice).

How is life affected by a diagnosis of endometriosis?

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