The following Endo Journey features Emma, a very sweet woman who has struggled with Endometriosis for several long years. She also battles other serious illnesses that require extensive treatment. Please keep reading to learn of Emma's Endo Journey:
My name is Emma I am 25 and I have been
diagnosed with endometriosis since I was 15 years old. This is my story....
I was 10 when I first started to realize
something was wrong. I started to get
these stomach pains like nothing I had ever felt before. They were sharp cramping pains that would
freeze me to the spot. My symptoms
started with just my bowel. I would get
sharp pains before needing to go to the toilet and feel sick until I had been. When I tried to talk to my mum she always
thought I was looking for an excuse for a day off school or a note for PE. I started to get sent home from school in my
last year of primary school with these pains and sickness but still nobody
really noticed anything was wrong.
September 99 I started secondary school and had just turned 11.
I remember the day my life changed
forever like it was yesterday. I woke
with the pains I had started to grow used to (as much as any woman can get used
to endo pains.) I got to lunch time and
started to feel very unwell, sick and clammy.
I went to find a toilet which were always locked in our school and
eventually found a teacher to unlock one for me. As I went to the toilet I realized I had
started my first period. Although I knew
what this was I wasn’t prepared for it at all and became very upset. I found my form tutor and she made me a cup
of tea and told me that everything would be okay. I never thought for a second that day would
be the start of a battle I would still be fighting over a decade later. My first period was the easiest of my
life. A week of average bleeding with
some discomfort.
Six weeks passed after my first period
and my second period started. The pain
was indescribable. No pain relief helped
and the bleeding couldn’t be held with one sanitary towel, I was using up to 4
ultra pads at a time. My bleed lasted
for 3 weeks. This became my monthly
cycle now. Then in-between cycles I
would get sharp pains up my back passage before even feeling the need to go to
the toilet, I would get a clammy sick feeling and spasms across my abdomen
until I went the toilet then the same pains would come before during and even
sometimes after my period. My periods
could last up to 6 weeks with heavy bleeding, clotting and dizziness. I tried to talk to my mum but she just told
me it was part of being a woman. It was
only when I was 15, I started to faint during my periods and was diagnosed as anemic, that my mum agreed for me to go to see a gynaecologist. I had my first appointment and was asked to
fill in a period diary but was also told due to the fact I was under 16 the
consultant would not do any examinations.
I filled in my diary with my 3 week heavy cycles and the fact I clotted
a lot during this time and waited for my next appointment. At my second appointment the consultant told
me she thought I had endometriosis and put me on the combined contraceptive pill. This didn’t help.
At 16 I received my first examination
and several scans. I had blood tests and
was booked in for a laparoscopy several months later. After this the endometriosis was confirmed
but I was told it was early stages and the consultant would not operate on me
at that stage. I came off the combined
pill and attempted the contraceptive injection.
I bled for 12 weeks and was rushed in to hospital to be put on
medication to stop the bleeding. At 17 I
became pregnant but sadly lost the baby after just 6 weeks. I was devastated but put it down to being
young and the fact I didn’t realize I was pregnant until I had lost the
baby.
At 19 I went traveling but my travels
were ruined by constant trips to hospital with excruciating pains and
sickness. Then unfortunately I was
involved in a massive road traffic accident that left me partially paralyzed
for 8 months and with massive head, back and neck injuries. When I returned to England my stomach pains
persisted but were now putting me in a&e regularly due to the fact nothing
controlled the pain. At the age of 19
doctors decided to remove my appendix thinking this could be the cause of the
pain but when they removed my appendix they found nothing wrong with them. I was referred to a gastroenterologist. I was put through 4 colonoscopies before finally
being sent back to gynaecology again.
By the time I was 20 I had another
laparoscopy and again was told endometriosis but again told it was early stages
and no surgery was required. I was
advised to go back on the pill but refused as I knew it didn’t work. I was given strong pain relief and sent back
to my GP. By now I was in a long term
relationship and trying for a family.
But tragically this was never to be.
After several miscarriages and countless
visits to a&e I was finally offered the prostrap injection to help my
endometriosis. I was on this for a total
of 18 months never being told I should have been on HRT as well. Eventually fed up that I went through years
of never being able to see my consultant because he was too busy and always in
meetings and always seeing junior doctors who didn’t understand endometriosis
properly then being diagnosed with osteoporosis because of the careless way I
was given the prostrap, I asked for a referral to another gynaecologist. I was eventually sent to an endometriosis
specialist in Chester at the age of 23.
My first visit to Chester resulted in
another referral to a more specialist consultant who I saw several weeks later.
I was immediately taken off the prostrap
and booked in for another laparoscopy.
This went ahead two months before my 24th birthday. I was diagnosed with stage 4/5 endometriosis
with adhesions on my bowel. After this I
was immediately booked in for excision surgery for the first time in a
decade. I had the surgery and then was
put on zoladex injections for 8 months.
I am now 25. I have just had my 8th zoladex
injection and suffering bladder, bowel and kidney problems. I get severe pains regularly, constantly need
to go to the toilet and get sharp pains through my bowel and in my
kidneys. I am due to see a urologist in
2 days and my endometriosis specialist in 5 days time. I wish I could say this was my story but
unfortunately this is not the end. 10
years ago I thought I would have a family and live a relatively normal life. I’ll never have children and now I am
virtually housebound. I had a career I
worked towards for 7 years that has now had to end. I also have an auto-immune system disease
which severely affects my health and osteoporosis thanks to the 18 months of
prostrap minus any HRT influence. My
life is nothing like what I had planned and my most recent development is a
referral to the pain management team. I
regularly have to go to a&e because of the uncontrollable pain, most of the
nurses in my local hospital know me by name now.
The only thing is that a lot of nurses don’t
understand what endometriosis is and when I explain I am on zoladex they hardly
ever know what this is. I am now on
morphine patches and paracetamol daily and I really don’t know what the future
holds. What I want for my future is some
relief from the constant pain and the embarrassing bladder, bowel and kidney
problems, and for this condition to become better known. Awareness to our condition needs to be
raised; nurses and doctors worldwide should know how we suffer and how to help
us. I regularly have to explain my
condition to medical staff and the treatments I have undergone or am currently
undergoing. Whether this will ever
happen I don’t know and I don’t think anyone could ever answer me that.
Thanks for sharing your story, Emma. I am so sorry that you have suffered from so long. I hope that doctors are able to diagnose your bladder and bowel symptoms and give you the treatment you deserve. I am also sorry about your miscarriage, I can't imagine the pain of losing a child. It is heartbreaking......
If you have a comment or question for Emma, or would like to share your personal story, please share below.
xo Heather
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