My symptoms initially started with very severe pelvic pain,
bowel pain, I developed lower back pain which made walking difficult.
Bladder pain, as well as the bowel pain so even going to the toilet was difficult
I developed anxiety and depression
and I had to basically cut things out of my life
to be able to accommodate all of those symptoms.
I’m Kathryn, I’m 40 and I live in Falmouth with my 7 year old son, Ollie.
Before I had endometriosis I was a really outgoing, adventurous person.
I was a qualified teacher and I really thrived on challenges.
I taught in New Zealand, Australia and 2 European schools in Vienna
but as my symptoms started to appear, I became less able to cope
with the pressure and stress of the job that I used to really, really enjoy.
So I had to start stepping down the career ladder
and I ended up, pretty much working from home for
probably 7 out of the 10 years that I was really ill for.
I came off the pill in 2010 and within a couple of months I noticed that
my periods had become really painful.
So I went to see the GP, he told me that he thought I probably had endometriosis
but it was just one of those things and there wasn't much they could do about it.
My symptoms grew worse, I was referred to a bowel consultant in 2012.
In 2016 after a really, really bad period, I just went to the GP the next day
and cried my eyes out and said that I just - I couldn’t go through
what I went through ever again, I thought I was gonna die on the toilet
it was that bad.
Eventually I had a referral come through for the
endometriosis clinic at Treliske and when I saw that arrive I didn’t know
whether to laugh or cry because, I didn’t even know that there were
endometriosis clinics let alone, one 20 minutes away from where I lived.
So I had my first appointment with them in 2017
and I had a 12 month wait for my laparoscopy
part of my bowel was completely plastered to my womb
and yeah, during the laparoscopy I was diagnosed with stage 4 Endometriosis.
Ultimately, because it was left for such a long time
I actually needed life saving surgery that took a very, very long time to recover from.
They didn't find out until my second surgery
that I had a mass inside my bowel as well.
So the endometriosis had eaten through all 4 layers of the bowel
and formed a mass inside, which is why I was struggling to eat.
So the more ill I became, the less able I was to look after Ollie properly
I really struggled with, just day to day house duties like cooking
I had no appetite so I was crashing out for 3 or 4 hours everyday
he would be unsupervised in that time, he was only 3 or 4 when it became really bad.
I would struggle to get up in the mornings
so he would get himself up, spend time on his own downstairs
he would have to make his own breakfast.
He saw me crying a lot.
He saw me on the floor, in pain, a lot.
It had a really big impact on him emotionally.
Whilst I was having my first surgery, I felt very disconnected from him
so we had a year out, I home schooled him
just so we’d get to know each other again properly and connect with each other
and he was a really good source of comfort for me
and he really helped me through it and gave me a reason to get better.
Endometriosis doesn’t just affect the individual it affects everybody that’s part of their life.
I check in with Endometriosis UK quite a lot.
I came across the House of Commons survey on their Facebook page.
I saw that it was for House of Commons and I really wanted to try and reach out
to someone who might be in a good position
to help make some positive changes for us.
Another lady said, “I had stage 4 severe Endometriosis
I had a 7 year wait for diagnosis
from my referral to hospital I had a year and a half wait for surgery
my surgery was life saving as my bowel was 50% blocked
with a mass of adhesions that had grown through the bowel.
Hearing Alec share my experience in Parliament
was amazing for me because it just made me feel that finally
my voice had been heard and someone was actually listening to what I had been through.
The way he talked about it, he really made it into a significant medical condition
and there is a really big misconception around endometriosis
that it’s just bad periods or just, you know, a bit of pelvic pain
and it just made me feel that what I had been through had finally been validated
and acknowledged.
Having this connection with Parliament has been a really positive experience for me
because, again, it’s just made me feel very empowered
and just, very justified in how I’ve been feeling all these years.
At the moment 7 and a half years is the average time that it takes to get diagnosed
and it’s not acceptable to leave women waiting
for that length of time and it means that
we’re not only waiting 7 and a half years for diagnosis
we’re also waiting for 7 and a half years to get the right treatment.
One thing I’d really love to see the government commit to
is raising public awareness and understanding of what endometriosis is
and how badly it affects our lives.
We need to help women to feel more comfortable in talking about endometriosis
we need to try and encourage more women to discuss it
and get everybody to discuss it because when I had the symptoms
although Endometriosis was mentioned I had no idea
that it was a condition that could be potentially harmful if left.