Women share their endometriosis stories #EndoWise

Women share their endometriosis stories #EndoWise


– It just feels like it’s
been there since the start, to they extent where I would be vomiting and have to take days
off school every month. – You are told that, as
a woman, you’ll have pain when you have your period,
and I thought nothing of it. – I felt pain, and for some reason, girls have been told to expect that. – It was stopping me from doing things. It was stopping me from walking. It was really uncomfortable. – So I kept going into
emergency needing medication, and then that’s when you
get accused of drug-seeking. – I would be in tears because of the pain, but nobody ever told me
that that wasn’t normal. – As soon as that lunch
bell rang and my kids were out of the classroom,
I burst out into tears, and I went straight over to the office and I said, I can barely
walk, I am in severe pain. – Had a massive impact in
the relationships that I had. – I think for younger
women, really, the crucial thing is the mental health side that accompanies chronic illness. – But as soon soon as
you’d pass that cycle and you’d stop feeling that
pain, you start to second guess yourself and think, was
I really in as much pain as I thought? Was I being dramatic? Was I hormonal? And you would start to
second-guess yourself. – When it gets to that acute, sharp pain, when it feels like, who just
stuck a Stanley knife in me? That’s the stuff that’s
really difficult to handle and it impacts on your work. It impacts on study. It impacts on social life. – I think that’s one thing
that people don’t realise about endometriosis is, it’s
not always about the pain. Sometimes it’s just so exhausting
that you can’t even get off the couch. – This stupid condition was
controlling my life, you know. I was being ruled by this condition. It was affecting my personal life. It was affecting my sex life. It was affecting my professional life. And the first option that
he presented to me was that the one solution
for this kind of symptoms and situations was what
my mother had had done, which was a radical
hysterectomy, and I was 17, and I just remember
sitting there thinking, is this person crazy? – It wasn’t until I was about 21, 22, that the word endometriosis
was even mentioned. – He asked me a series of
questions because, obviously, sex was affecting my mental
state quite significantly, which is something that a lot
of people don’t talk about. I didn’t realise that with endo, anxiety is really quite common. – That gynaecologist said,
“Well, before we do anything, “we need to do a laparoscopy
and have a look inside, “and see what it is. “I suspect you’ve got
chronic endometriosis.” – I was crying because I was so scared they weren’t going to find anything, and there’d be no reason whatsoever for me to be in that much amount of pain. – After the laparoscopy,
he came out and he said, “Well, you’ll be amazed to
find out that it’s right “through you, that you’ve actually got “quite extensive endometriosis.” And, you know, “Let me show
you the sort of photographs “from the operation.” And I remember just
looking at him, thinking, I did tell you. – I guess I felt positive
because we had a diagnosis. It’s nice to be able to
name what you’ve got. – I was actually quite
excited, to finally be able to get some answers. They had found endometriosis,
moderate endometriosis sitting all in my Pouch of Douglas. So I had a lot of gastrointestinal issues. – I was treated at the time with an IUD. I don’t suffer any of the
symptoms of endometriosis, and I no longer have any pain. – Diet, exercise, naturopathy. I do yoga, sofa meditation. That was a big turning point for me. – I got a gynaecologist,
an endocrinologist, and a pelvic floor physio,
so yeah, it was really, really good, actually, finding them. They helped me hugely. – It was an opportunity to,
like I said, take the reins, and tell a different story. – That you weren’t crazy. You weren’t, you know, flaky. You weren’t putting it
on and pretending to be in so much pain to get out of things. Just to have someone
reassure you is so important. – I was really fortunate that
I was able to have a doctor that saw me so quickly, was so confident, went straight in and
removed it, and was always open to the idea that the
surgery is not the cure. And it’s such a multidisciplinary approach that you have to have. – The pain is real. The condition’s real. It’s not necessarily going to go away, but it’s not going to rule me. I’m not going to let it be
packed on everything I do and every decision I make. I’m going to be the powerful
one in this situation, and that’s sort of how I’ve
lived with it ever since. – And I think that’s an important thing that women need to understand, is that, if you know one person with endometriosis, you know one person with endometriosis, ’cause it’s such an
individualised condition. It will present very
differently from case to case. – I’m sure a lot of other
women may relate to this. You actually don’t know
that you ave the disease until it’s gone. – I would say that
probably the biggest reason why my story is so much better
than other women’s stories, that I’ve had so much more success, is because of my
gynaecologist and my doctor. – The experience for her
was a lot more positive than it was a while back
when I was going through it. – You need to trust your
instinct, and you need to educate yourself when
you do have any kind of chronic condition,
especially endometriosis, because unfortunately a woman’s pain isn’t always taken seriously. – I think the only thing I’d say would be, from the partner’s point
of view, like, listen. Invest yourself in it as
much as what your partner is, because you’re both going through it, whether only one of
you is physically going through it or not shouldn’t have an effect on how invested you are in
the actual situation itself. Just talk with your partner about it, because they’re the one that’s
actually got the symptoms and everything that goes with it. – If the pain is that bad, if
you’re vomiting every month, if it’s down the legs, if you can’t move, if painkillers don’t work,
there’s something wrong. Go get checked out and if
your doctor’s unwilling, find another doctor.

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