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Emma Barnett: Fighting Endometriosis
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00:08A lot of my life I now realise I have been getting on with whatever is in front of me
00:14and getting through it.
00:18That's maybe how a lot of people feel about their lives, but I also have pain.
00:25It's like having a drill inside my stomach that is going down and into my organs.
00:37Yet I will go to work, I will do what's expected of me.
00:47I have endometriosis, which is not for the faint-hearted as a disease.
00:54I used to think it meant that when I had a period it would just really hurt.
00:59I now understand it is a system-wide condition.
01:06And that means for me lots of pain at different times, which can be horrendous.
01:16I think you're in a lot of survival mode when you have this disease.
01:22But I am trying to step outside of that, use the skills I have as a journalist, and be very
01:30honest about what it has been like as a person, as a woman, to live with this.
01:36I want to hear from women who, like me, are so deeply affected.
01:41I couldn't get out of bed. It was like as if my pelvic was locked.
01:47I just kind of collapsed on the bathroom floor in just so much pain, and I just thought, this cannot
01:52be normal.
01:53The endometriosis specialist came to me in hospital and said, you need a bigger operation.
01:58I had no idea that it could get that bad.
02:02Oh, I'm sorry.
02:06Take what I've learned to those who have the power to change things.
02:10Why do we not have a dedicated fund for researching a cure and treatment for endometriosis?
02:17I think that is the right challenge. Why is it that we still don't know enough?
02:22And face the hard reality of living with a condition with no known cure.
02:29I have been in an enormous amount of pain. I just want it out. I just want my womb out.
02:52Good morning.
02:54It is my absolute pleasure to welcome to the stage
02:57award-winning journalist and broadcaster Emma Barnett.
03:08don't all leave at once come on i mean it's a it's a beautifully sexy disease to talk about
03:14i can feel the stage just empty no i'm joking good morning right now i'll be honest
03:23i am not very well this morning at all my insides are churning because i have endometriosis
03:33women have had endometriosis since time began but it's only in the last i would say
03:39eight to ten years that people can even say the word
03:46can i ask do you know anyone with endometriosis
03:54do you have endometriosis
03:59well i've seen you and i'm very very sorry endometriosis is a lifelong condition that for
04:07me started in my early teens
04:11it's a disease where cells very similar to those which line the uterus start to grow in other parts
04:17of the body they can grow anywhere but are usually found inside the pelvis on organs like the fallopian
04:26tubes ovaries or bowel these rogue cells multiply and spread creating raw and angry sores
04:38activated by the hormones of the menstrual cycle these sores thicken and bleed each month which
04:44inflames and scars the surrounding tissue causing intense and debilitating pain
04:54how are you right now today physically uh today is actually quite a good day pain wise uh i'm pretty
05:03cold which i think is is part of having this bastard thing inside me that i don't really understand very
05:09much about still locked in no slack in the body find the feet and then drive the floor away one
05:15when i first got diagnosed i knew nothing i didn't even know how to spell the word i didn't even
05:21know how to spell the word i didn't know how to spell the word i didn't know how to spell
05:21the word i don't know how to spell the word i didn't know how to spell it
05:21I didn't want to admit to myself that I had something
05:24that I'd have to learn about and learn to live with,
05:28but you do.
05:30I've been strength training for the last two years,
05:33which has really, really helped.
05:35Helvet physiotherapy, which is really good.
05:38That's it, big energy and down.
05:40Some people talk about going in an infrared sauna,
05:43the importance of diet.
05:45Heavy in the front leg and then like...
05:47You know, there's knowledge that women
05:49scrappily pieced together and share.
05:53But that is not why I'm doing this film.
05:56Freak.
05:58Endometriosis is as common as asthma and diabetes in women,
06:02but only receives a fraction of the funding.
06:07With one in ten women of reproductive age in the UK
06:10suffering with this condition,
06:12it is a national healthcare emergency
06:15that somehow still exists in the shadows.
06:23They do not have a cure.
06:26They do not have a treatment pathway.
06:30And I find that very shocking.
06:34Too often, women are left to advocate for themselves
06:37in a system that fails to recognise what sufferers of this chronic condition
06:41really need.
06:45I've come late to feeling anger about endometriosis.
06:48I think at first I thought, OK, that's what it was.
06:51There was a name.
06:52I wasn't imagining that something wasn't right.
06:56But the rage has come as I've started to get no answers,
07:01as I have done everything I can do.
07:03Eventually, you feel angry, hurt and ground down by it.
07:22My endometriosis has changed over the years.
07:25I still have very, very symptomatic bad days.
07:36I feel like the plates of the earth,
07:40like my earth, my body inside me, are moving.
07:47And it's the feeling of that movement that causes a lot of pain.
07:53When you have a flare-up, it is like a tsunami through every cell in your body.
07:59You cannot move.
08:02You can't do anything.
08:04The pain is total.
08:05It's not in your pelvis.
08:06It's not in your legs.
08:07It's not in your arms.
08:08It's everywhere.
08:14I'm on my way to the train station and enormous amounts of pain,
08:19sort of waves going through my body.
08:24It's just circling.
08:26It's like a cyclone.
08:29Nothing touches it.
08:32Fuck endometriosis.
08:35My decision to talk publicly about endometriosis
08:39means more and more women are starting to share their own experiences with me.
08:44I had an ultrasound scan over Christmas
08:47and it confirmed that my endo is back
08:50and is in the usual spots.
08:54I'm honestly petrified.
08:58I can't go back to how I was.
09:03This is day six of
09:07an incredibly gruelling flare.
09:10It's the kind of pain that you feel like you have to hold your breath.
09:14Everything is on red alert, fire, burn, throb.
09:21Sharp, shooting, stabbing, knife-like sensations, twisting.
09:27It's just everything at once.
09:31My craps are so bad, I genuinely feel like I could pass it.
09:38It feels like you're not going to make it out.
09:42Oftentimes, I felt like I'm going to die during the flare-up.
09:50When I eventually go to bed tonight,
09:53I know that when I wake up,
09:55I know I'll be in the same pain.
10:02And there's nothing I can do about it.
10:10I've known from a very young age
10:12that something was wrong in my body.
10:15And the different doctors I saw
10:16put me on stronger painkillers.
10:20No one was ever questioning
10:21whether there was something else.
10:23It was Emma's really struggling with her periods.
10:27And then the suggestion at the age of 14
10:29to go on the pill began.
10:32For decades, doctors have prescribed
10:35the contraceptive pill to girls and women
10:37to help manage heavy or painful periods.
10:40The synthetic hormones trick the body
10:43into suppressing your natural cycle,
10:45which can help stifle symptoms.
10:50The pill had been masking a lot of the condition,
10:53but it still, because I had periods,
10:56was extremely painful at different points.
10:58And I was given this very strong message
11:03by my mother,
11:03this is just how it is for us.
11:06How it was for me,
11:08how it was for your grandma.
11:10This is it.
11:13Everything only got really bad
11:15once my husband and I
11:16started trying for a baby.
11:19I stopped taking the pill,
11:20and it was really hard.
11:22It was very, very hard indeed
11:24to go back to the natural form of my body
11:28and its hormonal cycle.
11:31And I couldn't get pregnant.
11:33And I remember my friend actually saying to me,
11:35it sounds like you've got endometriosis.
11:39And I said, what's that?
11:42And then a whole process kicked in
11:45of trying to get a diagnosis,
11:47of understanding what that would mean.
11:49And eventually that meant
11:51going for a laparoscopy.
11:54I soon discovered
11:55that a laparoscopy,
11:56or keyhole surgery,
11:58is one of the only ways
11:59to see endometriosis
12:00and then remove it
12:02by cutting or burning it out.
12:07I woke up in the hospital bed
12:11and it was just said to me,
12:12have endometriosis.
12:13There was no explanation.
12:14There was no definition.
12:18I said, what does that mean?
12:20And then I do remember
12:20it was all about my bowel,
12:22that a lot of it had been on my bowel.
12:23And that really explained a lot
12:26about stomach troubles
12:27I'd had throughout my life.
12:30For years,
12:31there were tests
12:32for irritable bowel syndrome.
12:34My mother has Crohn's disease,
12:35so there was a concern
12:36that I had that.
12:40But no one said to me,
12:42endometriosis.
12:54Oh, I'm such a good train driver.
12:5735-year-old Madalitso
12:59was recently diagnosed
13:00with endometriosis
13:01after living in pain
13:03for almost 25 years.
13:07Hello.
13:08I'm Emma.
13:09Emma, hi.
13:10It's Madalitso,
13:11but call me Madha.
13:12Madha?
13:13OK, really nice to meet you.
13:14Nice to meet you.
13:15Thank you for having us to your home.
13:15You're welcome.
13:16Come through, come through.
13:19Originally from Malawi,
13:20Madha moved to London
13:21with her family
13:21when she was 13.
13:25Shortly after,
13:26she would begin
13:27a long, arduous journey
13:29to diagnosis.
13:33How old were you
13:34when you started your period?
13:36I was around nine
13:37going on ten.
13:38It was very heavy
13:39and I actually
13:42didn't start
13:43questioning it
13:44until I was about
13:4617 going on 18.
13:47I remember
13:48I had five days straight
13:51of this really bad pain
13:52on my right-hand side
13:53and that was the first time
13:55I ended up at the A&E.
13:57The initial thought
13:58was my appendix.
14:00So we went for surgery,
14:02came out of the surgery.
14:03You had your appendix out?
14:05Yeah.
14:05I had my appendix removed.
14:07And then,
14:08I just find that
14:09really shocking
14:10that you've had your appendix out
14:11and you didn't need to.
14:12Were you OK after that?
14:15So,
14:15I was still in pain
14:16but
14:17I just kept putting it down to
14:19maybe I'm just so
14:21from the surgery
14:22until one day
14:24I woke up
14:25and
14:27my stomach
14:27had blew up
14:29and I looked like
14:30I was six months pregnant.
14:31The GP did all the tests
14:33and said,
14:34yes,
14:34she's definitely not pregnant.
14:35It looks like
14:36she has IBS.
14:38So,
14:39irritable bowel.
14:40Irritable bowel syndrome.
14:41Yeah.
14:41So they said
14:42she looks like
14:42she has IBS
14:43and prescribed me
14:44some laxatives
14:46and then
14:47sent us on the way.
14:48And then over the years
14:50it just kept getting worse.
14:54there was a day
14:56I woke up
14:57and I couldn't get out of bed.
14:59I'm sorry.
15:02I couldn't get out of bed
15:04and
15:05my son was next to me
15:08and
15:10because he's so used to
15:11in the morning
15:12he says,
15:13Mummy,
15:13can you make me porridge
15:14breakfast?
15:17And that day
15:18I couldn't get up.
15:19I couldn't get up.
15:22I said
15:23to the GP
15:26it's not just IBS.
15:28I was like,
15:29something is wrong.
15:30Something is wrong with me.
15:33And I remember that day
15:34she actually said
15:37what you're describing to me
15:38are symptoms of PMS.
15:41PMS?
15:44As in premenstrual syndrome?
15:46Yeah.
15:46Did you feel like
15:47you were going mad?
15:49Yeah.
15:49Physically I'm feeling the pain.
15:52Mentally I'm telling myself
15:54maybe this is just in your head.
15:56The GP
15:57referred me to
15:58the gynecologist.
16:00She asked me
16:01I explained
16:02all my symptoms
16:03over the years
16:04what's been happening
16:06and she said
16:09you're
16:10describing
16:12severe
16:13case of endometriosis.
16:21the diagnosis
16:22is official already
16:24that you have
16:25endometriosis.
16:26Yes.
16:27It is.
16:27And you've been
16:28referred for surgery.
16:30Yeah.
16:35Good morning.
16:36Good morning.
16:37How are you doing?
16:38Good to see you.
16:39Good to see you.
16:41Today's the day.
16:41Today's the day.
16:42We chatted about it
16:43a long time before
16:43and I know it's been
16:44a long time coming.
16:46So we're going to have
16:47a look inside.
16:48We know that there is
16:49a plaque of endometriosis
16:50between the bowel
16:51and the womb.
16:53In terms of what we
16:54don't know a huge amount
16:55about is how much
16:56other endometriosis
16:57there'll be elsewhere
16:58and as you recall
17:00the endometriosis
17:01just grows on the surface
17:02of the abdomen
17:02and the pelvis
17:03will compare it
17:03to the ill-endometriosis
17:04can hide from it
17:05on the skin.
17:05So we'll see you
17:06right in front of
17:07the world arrive today.
17:10This is a big moment
17:11in the sense of
17:12it's taken 25 years
17:14to get here.
17:15Mm-hmm.
17:1625 years.
17:17Mm-hmm.
17:22Are you okay?
17:23Yeah.
17:25It's such a long time.
17:28It's a long time.
17:30It's a long time.
17:43You can go into
17:44the procedure for
17:4510 minutes.
17:46They look around.
17:47There's nothing.
17:47They come out.
17:48You can go to the procedure
17:50for five hours.
17:52I think I was under
17:53for nearly three
17:55and he performed
17:57very careful surgery
17:58to try and
17:59remove as much
17:59as possible.
18:02Like me,
18:03Madda will undergo
18:03a laparoscopy
18:04with the aim
18:05of finding out
18:06how much endometriosis
18:07is inside her
18:11and whether
18:12it can be safely removed.
18:22All right.
18:23Gas on then, please.
18:24Gas on.
18:25Thank you very much.
18:33Perfect.
18:34Let's see what we find.
18:35Ovary's nice and free
18:37and mobile.
18:38Might be a little spot
18:39of superficial endometriosis
18:40on the ovary there,
18:41so we'll come back
18:42to that later.
18:44So there we are.
18:45We've got endometriosis
18:46down deep
18:47in the pouch of Douglas.
18:48Sort of classic
18:49gunpowder burn
18:50with some scarring
18:51and fibrosis around it,
18:52although the rectum itself
18:53is actually nice and free.
18:55And then, Johnny,
18:55if you look a little bit
18:56further right,
18:57we can see here's another
18:58deposit of endometriosis
18:59on the right pelvic side.
19:00When you see,
19:00that looks like a scar
19:01and these new blood vessels
19:02that have been pulled,
19:03everything's being pulled
19:04into the middle.
19:05So the spot of endometriosis
19:06is there,
19:07but it's shortened
19:08this length of pericineum.
19:09So it's basically
19:10crunched these two aspects
19:11together and crunched
19:12things together there.
19:13So that's going to hurt
19:14when it's moving,
19:15when it's being stretched.
19:16The pelvic nerves then
19:17only really know
19:18one signal to send
19:19to the brain,
19:20and that is pain.
19:25So our job today
19:26is to remove this area
19:28and this area here
19:29and all the other areas
19:29that look and appear
19:30inflamed.
19:40The main thing
19:41that I want
19:42is just a relief
19:44from the pain.
19:48Just do,
19:49in a way,
19:50it's more like
19:50getting my life back.
19:56Take our ports out
19:57one by one
19:58in the same way
19:58they went in,
19:59make sure there's no bleeding
20:00or anything like that.
20:02And if you happen
20:03to do a camera, Johnny,
20:04five mil syringe
20:05to me then, please.
20:13How much did you
20:14take out of matter?
20:15What would you say
20:16was the description
20:17of the level of work
20:18that you did?
20:19Yeah, so we did
20:20what we call
20:20a peritoneal excision.
20:22I think looking
20:23at the distribution
20:24of matter's endo,
20:25yes, we didn't find
20:26that deep infiltrating
20:28endometriosis
20:28and the level of scarring
20:29we were expecting
20:30perhaps on the basis
20:31of what the MRI suggested,
20:32but where we saw
20:33that particular
20:34angry-looking lesion
20:35of endometriosis
20:36was exactly
20:36where she's having symptoms.
20:39Having gone to meet Madda,
20:41you know,
20:42she has been
20:43in the most terrible way.
20:45Is that usual
20:45that you meet women
20:46after many years?
20:48Frustratingly,
20:48that is increasingly
20:49the norm.
20:50There are a number
20:51of possible misdiagnoses
20:52made along the way.
20:54People get told repeatedly,
20:55oh, you're having painful sex,
20:56you're having bleeding
20:56after intercourse,
20:57it must be some sort
20:58of pelvic infection,
20:59let's go and do all your swabs
21:00and you've got
21:00pelvic inflammatory disease
21:02and it's difficult
21:03to kind of get over
21:03that hurdle.
21:05I think the other thing is
21:07knowing that something
21:08is fundamentally wrong
21:09because pain is
21:10such a subjective symptom.
21:12You know,
21:13I don't know how much pain
21:13you're in right now
21:14and vice versa
21:15and it's really difficult
21:17to quantify
21:17and society,
21:19full stop,
21:20has normalised pain
21:21in women.
21:32I remember my mum's face
21:34in the room
21:34when I was diagnosed
21:36a little bit
21:37because I was still
21:38quite woozy coming round.
21:41She looked like
21:42all the colour
21:42had come out of her face
21:43because I'm her child
21:44and I'm getting a diagnosis
21:46and she then feels that,
21:48I hope she won't mind me
21:49saying that mixture
21:50of guilt
21:51that I didn't know
21:52and I, you know,
21:53I'm your mummy.
21:56But I also feel
21:57there was a flicker of,
21:59oh, this isn't how
22:00it has to be.
22:01This isn't how
22:02my periods
22:03were meant to be.
22:08I think of all the women
22:09in the hundreds
22:11of years before us
22:12who are just staggering
22:12around with this thing
22:14inside them
22:14and they haven't got
22:16any explanation
22:17as to why
22:19they're struggling
22:20so much more
22:21than other women.
22:31The pain and discomfort
22:32that a woman's
22:33reproductive cycle
22:34can inflict
22:35has largely been ignored
22:36by the medical establishment.
22:39It wasn't until
22:40the 1920s
22:41that endometriosis
22:43had a name.
22:44Even then,
22:45women's pain
22:45was just a footnote
22:46in the development
22:47of medicine.
22:50Excluded from
22:51clinical trials,
22:52women's bodies
22:53were seen as
22:53too complex
22:54for rigorous study.
22:56Worse still,
22:57came a belief
22:57that women
22:58had brought the disease
22:59on themselves.
23:02In 1948,
23:03a gynaecologist
23:05named Dr Joseph Meigs
23:06gave a lecture
23:07to the American
23:08College of Surgeons
23:09linking endometriosis
23:11to women's
23:12increasing independence.
23:16Since then,
23:17progress in understanding
23:18this condition
23:19has been painfully slow,
23:21meaning generations
23:22of women
23:23have suffered silently,
23:24their pain
23:26hidden from full view.
23:34When I was a teenager,
23:35I was drawn to Marilyn Monroe.
23:39I remember
23:40just watching her
23:41on the screen
23:42and thinking
23:43how watchable,
23:46how addictive
23:46she was to look at
23:47and how beautiful
23:48she was.
23:50But also,
23:51she was a woman
23:53who was in
23:53a lot of pain.
23:57And then I started
23:58to read about
23:59the fact she was
23:59addicted to painkillers
24:01and then somebody
24:02said to me
24:02they think she had
24:03endometriosis.
24:06I found it
24:07very inspirational
24:08that she could
24:10not just live
24:10but thrive
24:11through horrendous
24:13levels of pain.
24:15the fact she
24:16couldn't have
24:17her own children.
24:19It was just so
24:20eerie for me
24:21that someone
24:23I had been watching
24:24who seemed
24:26absolutely wonderful
24:27was hiding
24:30a world of horror.
24:32And it turned out
24:33we had the same thing.
24:42When I got my diagnosis,
24:44they said,
24:45right,
24:45six more months
24:46you should get pregnant
24:47after this procedure
24:48because it's cleared
24:50it all out
24:50and you should feel better.
24:51Did not get pregnant
24:53and the pain
24:55did not change
24:56at all.
25:00So from my point of view
25:01that operation
25:02was next to pointless.
25:05Just from an
25:06outcome perspective.
25:10And that began
25:11the gauntlet
25:12of fertility treatment.
25:18And this is where
25:20my only bit of luck
25:22came in.
25:23It worked.
25:24First time.
25:27I'd done it.
25:28I'd done the most
25:30extraordinary thing.
25:31I was having a baby.
25:38after two and a half years
25:40I thought,
25:42do I push my luck?
25:43Do I dare
25:44to try and have another baby?
25:46Can this body
25:47do it?
25:51Jeremy and I
25:52were really tight
25:53during IVF.
25:54He never put any pressure on me.
25:56He felt terrible
25:57I was having to do it
25:58again.
26:00And thus what began
26:02I can only describe
26:03as a bit of a nightmare
26:04compared to the previous experience
26:06because it didn't work.
26:10After failing to get pregnant
26:12on the first round
26:13my husband and I
26:14then embarked
26:15on five more rounds
26:16of IVF
26:16which eventually
26:18resulted in the birth
26:19of our wonderful daughter.
26:22However,
26:23it wasn't
26:24without its challenges.
26:26It was gruelling
26:27because
26:28it's awful
26:29each time
26:30IVF doesn't work
26:31but also
26:32I had to go back
26:33to my own cycles
26:34in between
26:34because you had to have
26:35a few periods
26:36to start IVF again.
26:39And after each round
26:40of IVF
26:41I would find my periods
26:42and my hormones
26:43everything was raging.
26:44You know,
26:45I disrupted it all
26:46with loads of drugs.
26:59I had to go back
27:00We're having a look
27:01at your uterus first.
27:03Most of the lining
27:05appears to be clear
27:05which is good.
27:07That will be important
27:08for the transfer.
27:10Yeah.
27:11Let's have a look
27:12on your right ovary.
27:14In Bristol
27:15Kerry and Karl
27:16are on their
27:17sixth round
27:18of IVF
27:19in their quest
27:19to have their
27:20first child.
27:22We can see the cyst
27:23here.
27:24Dominates the whole screen.
27:26Yeah, it does.
27:27Like so many
27:29the start of Kerry's
27:30periods at 14
27:31brought with them
27:32intense pain
27:33that remained
27:33a mystery
27:34for years.
27:37We got married
27:39in 2021
27:40and we knew
27:41that we wanted
27:42to start trying
27:43for a baby
27:44for a baby
27:44as soon as
27:44we were married.
27:46So I came
27:47off the pill
27:47I think the month
27:48after we got married
27:49and my periods
27:50just went
27:50straight back
27:51to how they were
27:52when I was
27:5314 years old again.
27:54The pain
27:55just all came back
27:56and it was just
27:57unbearable pain.
28:01How did you end up
28:02getting diagnosed?
28:03Finally,
28:04a doctor actually
28:05listened to me
28:05for the first time
28:07and I think
28:07they got me
28:08in for some
28:08blood tests
28:09and sent me
28:10for an ultrasound
28:10scan.
28:11They actually
28:12said to me
28:12in the scan
28:13that it was
28:14suspected
28:14endometriosis.
28:16My diagnosis
28:17was directly
28:18as a result
28:19of trying
28:20and failing
28:21to get pregnant
28:21over a year
28:23and a half
28:24or so
28:24and a lot
28:25went through
28:25my head
28:26you know
28:26like
28:28not even
28:28just about me
28:29like I'm
28:29going to let
28:30my you know
28:30Jeremy's not
28:31going to have
28:32a family
28:33like the whole
28:33thing just
28:34kind of imploded
28:35around me.
28:36I wonder
28:37how did it
28:38make you feel
28:38at the time
28:39about fertility?
28:40Yeah I
28:41I felt
28:42panic
28:43it was just
28:44a shock
28:44and I just
28:45was really
28:45really worried
28:47yeah just
28:48for both of
28:48us really
28:49and how
28:50our journey
28:51would then
28:51look moving
28:51forward
28:52like what
28:52what did
28:53that mean
28:54could
28:54could we
28:54still get
28:55pregnant
28:55was pregnancy
28:56even still
28:56an option?
28:57The first
28:58surgery
28:59wasn't
29:00particularly
29:01successful
29:01because
29:02when they
29:03got in there
29:03they found
29:04it was a lot
29:04worse than
29:05they'd originally
29:06yeah they
29:07weren't they
29:07weren't prepared
29:07for how bad
29:08it was
29:09they tried
29:10right they
29:10were still
29:10like three
29:11or four
29:11hours but
29:12they came
29:13out afterwards
29:13and were like
29:14hmm we weren't
29:15really able to do
29:15one of my ovaries
29:16was just
29:17completely
29:18inaccessible
29:19because they
29:20were they
29:20were just
29:21stuck together
29:22because endometriosis
29:23creates kind of
29:24webs of
29:25it's almost like
29:26glue inside
29:27your body
29:27and my
29:28ovaries were
29:29stuck together
29:30and they were
29:30being pulled
29:30behind my
29:31uterus
29:31and all
29:32of that
29:32was stuck
29:33to my
29:33bowel
29:33as well
29:34and I
29:35don't think
29:36they quite
29:36realised that
29:37until they
29:37got in there
29:37just how
29:38bad it
29:38really was
29:39did you
29:40then have
29:40to have
29:40another
29:41operation
29:42quite quickly
29:43or how
29:43long was
29:44the gap
29:44yeah it
29:45was about
29:45two months
29:45it was a
29:46five hour
29:47surgery
29:47and they
29:48excised
29:49as much
29:49as they
29:50possibly
29:50could
29:51in that
29:51time
29:51but
29:52both
29:52my
29:53fallopian
29:53tubes
29:53ended up
29:54being
29:54damaged
29:54so we
29:55went into
29:55surgery
29:56thinking
29:56that they
29:56were going
29:57to remove
29:57one
29:57but then
29:58when I
29:58woke up
29:59they told
29:59me
29:59they'd
29:59actually
30:00removed
30:00both
30:00of them
30:01which meant
30:01we couldn't
30:02then get
30:02pregnant
30:02naturally
30:04but yeah
30:04it was a
30:05bit of a
30:07shock
30:07yeah
30:08and like
30:09we knew
30:09it was
30:09necessary
30:10and they
30:11had said
30:12it was a
30:13possibility
30:15it's hard
30:15to tell
30:16until you're
30:16in there
30:17but yeah
30:18it was a
30:19shock
30:19but we
30:19just had
30:20to try
30:20and focus
30:20on
30:21okay
30:21this is
30:22for
30:22you know
30:23we want
30:23to go
30:24down
30:24the IVF
30:24free
30:24this is
30:25going to
30:25give us
30:25the best
30:26possible
30:26chance
30:27at IVF
30:27so
30:28we were
30:28very much
30:29like do
30:29what you
30:29need
30:30to do
30:34after three
30:35failed
30:35attempts
30:35at other
30:36clinics
30:36Kerry and
30:37Cal
30:37are giving
30:38IVF
30:39one last
30:40go
30:44good morning
30:45how are you
30:46nice to
30:47see you
30:47right
30:49exciting
30:50so that's
30:50the third
30:51collection
30:51of the
30:52package
30:52so hopefully
30:54the last
30:54one
30:58Kerry and
30:59Cal's
30:59fertility
31:00journey
31:00has been
31:00made
31:01all the
31:01more
31:01difficult
31:02by the
31:02damage
31:03endometriosis
31:04has caused
31:04to her
31:05reproductive
31:05organs
31:08today
31:09doctors
31:10will make
31:10a final
31:11attempt
31:11at
31:11retrieving
31:12eggs
31:12from
31:12Kerry's
31:13ovaries
31:13with the
31:14hope
31:14that they
31:14are
31:14healthy
31:15enough
31:15to
31:16become
31:16embryos
31:20this is
31:21the right
31:21ovary
31:22here
31:22we have
31:23a larger
31:23follicle
31:24up here
31:24the largest
31:26of the
31:26three
31:26and two
31:27smaller
31:27here
31:28so
31:29I'll try
31:30to get
31:30as many
31:30eggs as possible
31:31out of
31:31those
31:37okay
31:38we can
31:38pass
31:38that
31:38to
31:39Blair
31:51got the
31:52first
31:53egg
31:54very
31:55well
31:55here
32:04we have
32:04the
32:05second
32:05egg
32:05very
32:06well
32:17when we
32:18had
32:18our
32:19daughter
32:19I
32:20breastfed her
32:20until around
32:21six or seven
32:21months
32:22and then
32:23honestly within
32:24a week
32:25my periods
32:26started to
32:27make themselves
32:27known
32:28or rather
32:28I should say
32:29my hormones
32:29started to
32:30make themselves
32:30known
32:31and pain
32:32just
32:32straight back
32:33in
32:36so I
32:37just before
32:38going back
32:38to work
32:39at
32:39women's
32:39hour
32:39had
32:40the
32:40myrona
32:40coil
32:40fitted
32:44the
32:44coil
32:44has long
32:45been used
32:46as a
32:46method
32:46of
32:46contraception
32:47but the
32:481970s
32:49brought
32:49the
32:49hormonal
32:50coil
32:50which
32:51releases
32:51a
32:51synthetic
32:52hormone
32:52similar
32:53to
32:53those
32:53in
32:53the
32:53pill
32:55it's
32:56prescribed
32:56to
32:57patients
32:57with
32:57abnormally
32:58heavy
32:58or painful
32:59periods
33:00and is
33:01usually
33:01very
33:02effective
33:02but not
33:03always
33:06everyone
33:06thought this
33:06was going
33:07to be
33:07the answer
33:07I allowed
33:08myself a
33:09degree of
33:09hope
33:10oh my
33:11god
33:11it was
33:12the worst
33:12seven weeks
33:14my mood
33:15just disintegrated
33:17and then I
33:18tried three
33:19different
33:19contraceptive
33:20pills
33:20and that
33:21was honestly
33:21the worst
33:22few months
33:22of all
33:22I felt
33:24so low
33:24I had
33:25vertigo
33:26I had
33:27all sorts
33:27of side
33:28effects
33:31I can't
33:31use the
33:32word
33:32treatments
33:32with any
33:33of the
33:33things
33:33that I
33:34do
33:34to try
33:35and help
33:35live
33:35with
33:36endometriosis
33:36because there
33:37aren't any
33:37treatments
33:38the word
33:38to me
33:39means
33:40that you're
33:41treating
33:41something
33:41and it
33:42gets better
33:44there are
33:45workarounds
33:46there are
33:46potential
33:47fixes
33:48but they
33:49haven't moved
33:49on for
33:50decades
33:51they are
33:52take
33:52hormones
33:54surgery
33:55or have
33:56it all
33:56out
33:57that's
33:58it
34:00it has
34:01been
34:02horrific
34:03far more
34:04horrific
34:04than IVF
34:05far more
34:06the last
34:07two years
34:07to try
34:08and get
34:09to some
34:09kind of
34:09peace
34:09in my
34:10body
34:17I
34:18have trained
34:19myself
34:19to put
34:20a good
34:20face
34:20on it
34:21when I'm
34:21in pain
34:22had like
34:23quite a good
34:24run of it
34:25this morning
34:26with the
34:27children
34:27it's the
34:27weekend
34:29by about
34:31three o'clock
34:33I just
34:34pain back
34:37I just feel
34:39really ground down
34:40by it
34:42like I can't
34:43get out
34:44from under it
34:48it's
34:49it's not
34:50constant
34:50but it's
34:51so regular
34:52at the
34:53moment
34:53and it's
34:59hard to find
35:00the energy
35:00to keep
35:01overriding it
35:04I can't
35:05let myself
35:08go that
35:09about
35:11this is my
35:12life
35:13I don't want
35:13to feel
35:14sorry
35:14for myself
35:15I want
35:16to focus
35:16on
35:20but my god
35:21it would be
35:21amazing
35:22not to have
35:22endometriosis
35:24would be
35:27it would be
35:29incredible
35:31not to
35:33contend
35:33with this
35:34pain
35:42endometriosis
35:43is a force
35:44to be reckoned
35:45with
35:47is it worth
35:48having a
35:49diagnosis
35:50of course
35:51I think
35:52it is worth
35:52ultimately
35:53but I am
35:54reflecting
35:55on
35:57if you
35:57didn't
35:58would your
35:58life be
35:59that different
36:00in terms
36:01of your
36:02your condition
36:06in Scotland
36:0726 year old
36:08Chloe was
36:09diagnosed
36:09with
36:10endometriosis
36:11three years
36:11ago
36:16in that
36:17time
36:17she struggled
36:18to find
36:18any treatment
36:19to help
36:20with her
36:20pain
36:20and after
36:22three
36:22unsuccessful
36:23surgeries
36:23she is
36:24preparing
36:24to make
36:25one of
36:25the hardest
36:26decisions
36:26a woman
36:27can make
36:31I feel
36:32like I
36:33went from
36:34being a
36:35version
36:35of myself
36:36and the
36:37way that I
36:37thought my
36:38life would
36:38go
36:38and then
36:39the second
36:40I got
36:40my first
36:40period
36:41that was
36:41taken
36:42from me
36:42really
36:43that quickly
36:44yeah
36:44like I
36:45just look
36:46back at it
36:46and it's
36:47like there's
36:47two
36:47or like
36:48maybe like
36:49three different
36:49people
36:50and it's
36:50like growing
36:51up and
36:51being healthy
36:52and then
36:52getting my
36:53period and
36:54getting ill
36:54and then
36:55as time
36:55went on
36:56as my
36:56endo got
36:56worse
36:58how you
36:58are now
36:59how I am
36:59now
37:00I've always
37:01got some
37:02form of
37:02deep
37:03ache
37:03and then
37:05I get
37:05these
37:05flare-ups
37:06where I
37:07feel like
37:07I can't
37:08speak
37:08like
37:09you can't
37:09sleep
37:10I can't
37:11eat
37:11I can't
37:12do
37:12anything
37:13and
37:14it's
37:15it's
37:15horrendous
37:15it's
37:15it's
37:17horrendous
37:18like there's
37:18nothing that
37:19will ever
37:19ever compare
37:20when and how
37:22were you
37:22officially
37:23diagnosed
37:23I was
37:24diagnosed
37:24in the end
37:26of July
37:262023
37:27I had
37:28had
37:28diagnostic
37:29laparoscopy
37:30and
37:31I'd
37:31woke up
37:32and
37:32they'd
37:32said
37:33you have
37:33endometriosis
37:35after that
37:36surgery
37:37I got
37:38really
37:39really
37:39poorly
37:40and
37:41my
37:42endometriosis
37:43went from
37:43something that
37:44was impacting
37:45me one to
37:45two weeks
37:46out of the
37:46month to
37:46impacting me
37:47every single
37:48day
37:49after surgery
37:50yeah
37:50they had
37:51done a
37:51scan
37:51and found
37:52that my
37:53endometriosis
37:54had like
37:54really rapidly
37:56progressed
37:56in a short
37:57period of
37:58time
37:58everything
37:58was stuck
37:59together
37:59like it
38:00was a mess
38:01and
38:02endometriosis
38:02specialist
38:03came to
38:03see me in
38:03hospital
38:04and said
38:04you need
38:04a bigger
38:04operation
38:05and I
38:06knew then
38:06that it
38:07was bad
38:08like
38:09I had
38:10no idea
38:12that it
38:13could get
38:13that bad
38:14oh
38:15I'm sorry
38:17it's okay
38:19I am though
38:20I am really
38:20sorry
38:22and
38:23when they were
38:24like your organs
38:24were stuck together
38:25I was like
38:25what
38:26what
38:27what do you
38:28mean
38:28and
38:29every aspect
38:30of my life
38:31was so
38:31significantly
38:32impacted
38:32I thought
38:33surgery
38:34maybe maximum
38:35like four
38:36or five
38:36months
38:37and I'd
38:38went to the
38:39appointment
38:39and I was
38:40told it would
38:40be years
38:41and
38:42I was like
38:44I knew
38:45as soon as she
38:45said that
38:46I was like
38:46I will not
38:48be able to get
38:49to that point
38:51and of course
38:53that brings up
38:54suicidal feelings
38:55because the
38:56life that you
38:57thought you
38:57would live
38:58is nothing
38:59like the
39:00life that I'm
39:01living
39:05Desperate to
39:05have her
39:06removal surgery
39:07Chloe felt she
39:08had no choice
39:09but to pay for it
39:10privately
39:11in Abu Dhabi
39:13what got me
39:14through that
39:15period of time
39:16between my
39:16first and my
39:17second was
39:18think about the
39:19life that I'm
39:20going to have
39:21after
39:23they said that
39:24they were hopeful
39:25that I would get
39:25at least five years
39:26before the next
39:27surgery
39:28so I was
39:29really hopeful
39:30of a different
39:31life
39:31unfortunately my
39:32endometriosis had
39:33shown signs that
39:35I'd started to come
39:35back
39:36pretty much
39:38just everywhere
39:39I just think
39:40that I'm at the
39:41point where I'm
39:41so desperate
39:43for a change
39:44so I've requested
39:46a full
39:48hysterectomy
39:48and I'm waiting
39:50to hear back
39:51so you don't know
39:53if that's going to
39:53happen
39:54I don't know
39:55no
39:57if I could get
39:58like a
39:5830-40% reduction
40:00in pain
40:02my life would
40:03just be improved
40:03and I just want
40:04to go live it
40:05and not be
40:07in this
40:08in this
40:09yeah
40:09when you imagined
40:10your life
40:11did you imagine
40:11children in it
40:12I did imagine
40:14it in my life
40:15and that
40:16feeling was brought
40:17on to me
40:17when I heard
40:18that my
40:18endometriosis
40:19was getting worse
40:20I had the sudden
40:21feeling of
40:22I'm running out
40:23of time
40:23I'm at the point
40:24now where
40:25I would not be able
40:27to look after
40:27a child
40:28and I just
40:31wouldn't
40:32I wouldn't
40:33like
40:34it wouldn't be fair
40:36it would be
40:39yeah
40:39and I just want
40:42I want everything
40:43out
40:44and I know
40:45it's not a cure
40:46but I just
40:47I need to have
40:49a better quality
40:50of life
40:51and I think
40:52that having a child
40:53would probably
40:54end up
40:55worsening
40:55my quality
40:56of life
40:56because I just
40:57wouldn't be able
40:57to give it
40:59what it needs
41:01so
41:02I've kind of
41:04closed the door
41:05on that chapter
41:06and
41:07accepted that
41:08this is
41:09not in my
41:10cards
41:10and I'll be a
41:11fun auntie
41:12and a
41:14good auntie
41:15to my friends
41:16kids
41:17and I love them
41:19but I just
41:19know that
41:21I can't
41:23sorry
41:24I shouldn't
41:25I just
41:25feel very sad
41:26to hear that
41:28but yeah
41:29what a thing
41:30to have to
41:32realise
41:32because it is
41:34yeah
41:34I'm very sorry
41:36to hear that
41:36no that's okay
41:37sorry
41:37I'm sorry
41:41because I just
41:42think
41:46you know
41:46if you don't
41:47want kids
41:47it's one thing
41:48of course
41:48but if
41:49you wanted
41:50that choice
41:50yeah
41:51I think
41:51it's like
41:52it's just
41:52such a terrible
41:53thing to take
41:54from you
41:54yeah
41:55yeah
42:01I have a
42:02huge amount
42:02of rage
42:02about endometriosis
42:05I'm angry
42:06at how hard
42:07it is
42:08and how difficult
42:09it is
42:10to be looked
42:10after
42:11you're not
42:12a patient
42:13in this scenario
42:14with this
42:14particular disease
42:16you have to
42:17become some
42:17kind of advocate
42:19some kind
42:20of knowledge
42:21warrior
42:22why am I
42:23a warrior
42:24I'm not
42:24very well
42:27you can't
42:27really have
42:28some of the
42:29sorrow that
42:29you could have
42:29with other
42:30diseases
42:30because
42:32there's no
42:33redemption
42:33really from it
42:36and I now
42:37have a daughter
42:39and I have
42:40to say
42:40when she was
42:41born
42:42I just
42:42thought
42:43I fucking
42:44hope it's
42:44not inside
42:45you
43:14Scottish
43:14researchers
43:15are hoping
43:15to develop
43:16the first
43:17new treatment
43:17for endometriosis
43:19in 40 years
43:22a clinical trial
43:23by the universities
43:24of Edinburgh
43:25Aberdeen
43:25and Birmingham
43:26is investigating
43:27whether a drug
43:28called
43:28dichloracetate
43:30is effective
43:31at pain management
43:32oh
43:33the weather
43:34in Scotland
43:34hello
43:35it's so nice
43:36to meet you
43:37Dr Lucy Whittaker
43:39is the clinical lead
43:40for endometriosis
43:41research studies
43:42at the University
43:43of Edinburgh
43:45why don't we
43:46give you this
43:46one
43:46okay
43:47and
43:47so you just
43:48pop that on
43:49and then do it up
43:50and I'll take you
43:51through into the labs
43:51and you can see
43:52where do we do
43:52some of our work
43:53okay
43:55thank you very much
43:58Lucy and her team
43:59run one of the few
44:00research centres
44:01in the UK
44:02dedicated solely
44:03to studying
44:04endometriosis
44:12what do you think
44:13it might end up
44:14looking like
44:14a cure
44:15for endometriosis
44:16would it be a pill
44:17would it be
44:17something you wear
44:18would it be
44:19an injection
44:20I don't know
44:21have you got any sense
44:22of how a disease
44:23like this
44:25would be tackled
44:27there's probably
44:27not going to be
44:28a one size
44:28that fits all
44:29and I think
44:30some of that
44:31if it is a cure
44:33it's going to have
44:34to start incorporating
44:35elements such as
44:36what type of disease
44:37have you got
44:38to an extent
44:39where it is
44:40but also things
44:40like your genetics
44:41how your immune
44:42system's working
44:43that's going to need
44:43to factor in
44:44all of those things
44:45is it an autoimmune
44:47disorder
44:47I think we
44:49don't fully know
44:51we certainly know
44:51there's a lot of overlap
44:52between different
44:53autoimmune conditions
44:54so say you've got
44:55things like
44:56arthritis
44:58inflammatory bowel disease
44:59you're much more
44:59likely to get
45:00endometriosis
45:01so we're also
45:02thinking about it
45:02as being a whole
45:03body condition
45:03so the immune
45:05system not working
45:06quite the same
45:06across the body
45:07as well as those
45:08elements about how
45:09your brain processes
45:10pain
45:11it's just terrible
45:12why do you want
45:13to work on such
45:14a ghastly disease
45:15wasn't that the answer
45:16why we should work
45:17on it
45:17look at breast
45:18cancer
45:19so in the 70s
45:20majority of women
45:21with breast cancer
45:21would die of it
45:22and the treatments
45:23we had were
45:24really mutilating
45:25surgery
45:26or really
45:27really
45:29difficult
45:29chemotherapy regimes
45:30that had horrible
45:31side effects
45:32and then over time
45:33cancer research
45:34had so much money
45:35put into it
45:36and then they
45:36unpicked the disease
45:37and then that's
45:38helped them to have
45:38these better treatments
45:39so I live and hope
45:40that if we have
45:40the same investment
45:41in endometriosis
45:42we will have
45:43these changes
45:44but the comparison
45:45you're drawing
45:46puts me in a world
45:48and puts us in a world
45:49where anyone would
45:50take endometriosis
45:52as seriously
45:52as they now take
45:53breast cancer
45:54and I know that
45:55wasn't without a fight
45:56but breast cancer
45:57was killing women
45:59endometriosis
45:59for a lot of people
46:00it's not a death
46:02but there's a living
46:03death element
46:08if you were to compare
46:09the funding
46:10of breast cancer research
46:11and endometriosis
46:12I mean they couldn't
46:13even exist on the
46:14same page
46:14could they?
46:15not at all
46:16so I think that's
46:17again one of the
46:18things that's held us
46:19back
46:22endometriosis costs
46:23the UK economy
46:2412.5 billion pounds
46:25every year
46:26because one in six
46:27women will leave
46:28the workforce permanently
46:29because of their
46:29endometriosis
46:32but I think
46:32dare I say
46:33the pressure is going
46:34to come from the
46:34policy makers
46:35who are realising
46:36the impact
46:36on endometriosis
46:37so you can tell them
46:38about how awful it is
46:39how painful it is
46:40but actually
46:41if you bring it
46:42into economics
46:43then sometimes
46:44that is what
46:45stimulates change
46:46so in this case
46:47women
46:49won't die
46:50so it won't get
46:51the attention
46:51of policy makers
46:52in that way
46:52but because they
46:53can't contribute
46:55financially
46:55economically
46:56fiscally
46:56because they've
46:57been totally
46:58waylaid
46:58out of the workplace
46:59out of their
47:00family lives
47:01that will be the
47:02thing that makes
47:03policy makers
47:04take notice
47:04you think
47:05sadly I think
47:05that is in
47:06research and
47:07women's health
47:07is one of the
47:08things that will
47:08drive change
47:22I have been
47:24in an enormous
47:25amount of pain
47:27since around
47:28nine o'clock
47:29last night
47:29coming up to
47:30nine o'clock
47:32today
47:34so nearly
47:3524 hours
47:37I don't know
47:37how to communicate
47:44the depth
47:45of the agony
47:46and how utterly
47:53disabling
47:54this is
47:57I just want it
47:58out
47:59I just want my
48:00womb out
48:05something's got
48:06to give
48:21last night was
48:21quite frightening
48:22actually because
48:22I haven't had a
48:23flare for a
48:24really long time
48:26compared to the
48:27very worst ones
48:28I've ever had
48:29it wasn't
48:31the worst
48:32but I was
48:32really really
48:33lucky that my
48:34husband could
48:35just scoop up
48:36the kids
48:36and let me
48:38just go in
48:39bath and
48:39then lie
48:39down
48:42the irony
48:43is
48:44I'm pretty
48:45laid low
48:46with endometriosis
48:47today
48:47coming to
48:48interview the
48:48health secretary
48:49about
48:49endometriosis
48:56hello
48:57nice to see
48:58you
48:58welcome to
48:59the department
48:59of health and
48:59social care
49:00thank you so much
49:00for having me
49:01and having us
49:02makes a change
49:02from talking to
49:03you down there
49:03I know I never
49:04get to see
49:05microphone in a
49:06studio
49:07exactly
49:07I know it's a
49:08busy day but
49:09thank you
49:09I wanted to
49:10start by asking
49:11you a slightly
49:12strange question
49:13which is
49:13do you feel
49:15you as health
49:15secretary know
49:16what endometriosis
49:18is
49:18so bearing in
49:19mind I'm not a
49:20clinician but
49:21I do get that
49:22it is not as
49:23straightforward
49:23as having this
49:24thing somewhere
49:25that just needs
49:26to be treated
49:28and similarly
49:29a member of
49:30my family
49:32has been through
49:33utter hell
49:34trying to get
49:35a diagnosis
49:36I suppose I
49:38wanted to
49:39start with that
49:40because this is
49:42flummoxed doctors
49:42it's a huge issue
49:44and yet I suppose
49:45that brings me to
49:46the question of
49:47why in Britain
49:48one of the biggest
49:49economies in the world
49:50we've invented
49:51things like IVF
49:53you know
49:53one of the first
49:54Covid vaccines
49:55why do we not
49:56have a dedicated
49:56fund for researching
49:58a cure and treatment
50:00for endometriosis
50:01I think that
50:03this country
50:04has for
50:06a long time
50:08now
50:09had an issue
50:11with not just
50:12everyday sexism
50:13but medical
50:15misogyny
50:15and to your
50:17point on
50:18research
50:19I think that
50:20is the right
50:21challenge
50:21why is it
50:22that we still
50:23don't know enough
50:23but why
50:24you are now
50:25health secretary
50:26this government's
50:26coming up to
50:27two years in power
50:28why haven't you
50:29done what France
50:30and Australia
50:31have done
50:31national action
50:32plans specifically
50:33for endometriosis
50:35Australia did it
50:36to officially
50:36recognise it
50:37as a chronic
50:38condition
50:38you have this
50:39power I suppose
50:40why can't
50:41can you not
50:42do it
50:42before we started
50:43so we just
50:44launched our
50:45renewed women's
50:46health strategy
50:47there are a few
50:48things going on
50:49one is research
50:50funding is increasing
50:51but why are
50:52researchers saying
50:53to me I've been
50:53doing this film
50:54for six months
50:55we don't have a
50:56dedicated endometriosis
50:57fund we don't
50:58have many millions
50:59to play with
51:00we just don't have
51:01that in the UK
51:04well let me go
51:05away and look at
51:06that because
51:06because if you
51:07could
51:07this isn't our
51:09usual
51:09no I know
51:10it's not the usual
51:11this is me
51:12coming here
51:13trying to take
51:14with me
51:15the experiences
51:17the experiences
51:17of these women
51:17that I've been
51:18speaking to
51:18throughout the UK
51:19you know I suppose
51:21it's just trying
51:22to communicate
51:23the sense of
51:24urgency
51:24and that emergency
51:25yeah and tell me
51:26when you talk to
51:27some of our
51:28leading gynecologists
51:29and some of the
51:31leading kind of
51:31clinical
51:32yes
51:33professionals in
51:34this space
51:34what's their
51:35account for
51:36what's gone wrong
51:38there isn't
51:39funding
51:39there isn't
51:40interest
51:40they don't have
51:42any answers
51:42the only
51:43potential option
51:44is hormones
51:45or surgery
51:48and they have
51:49to leave women
51:50as they sort of
51:51you know it is
51:51what it is
51:52yeah and that's
51:53where I think
51:54there's two things
51:55one is
51:55on the research
51:57side both in
51:58terms of
51:58diagnostics and
51:59treatment
52:00there is more
52:01money going in
52:02I take up your
52:03challenge though
52:03that there needs
52:04to be more
52:05of a dedicated
52:06focus
52:07you know there
52:08are things that
52:09we're trying to
52:09do that would
52:10speed up women's
52:11access to
52:12the diagnosis
52:13because
52:14because 10 years
52:15is it just about
52:16oh it's just
52:16atrocious and
52:17in the case of
52:18one of my family
52:18members 21 years
52:19it's taken to
52:21get to the bottom
52:21of what's been
52:22going on with her
52:23but even when
52:24you get diagnosed
52:25it's then
52:26completely topsy
52:27turvy what might
52:28happen to you
52:28so why is there
52:29no specific
52:30endometriosis pathway
52:33well there should
52:34be I think
52:35is the simple
52:35answer to that
52:36you're the health
52:38secretary
52:38but also some
52:39of these
52:39so on clinical
52:40pathways these are
52:41clinically led
52:42decisions as well
52:43of course
52:43so there are
52:44some improvements
52:45that are coming
52:45firstly we should
52:47get it right first
52:48time so when a
52:49woman goes to see
52:50a GP that GP
52:52should then say
52:53okay I'm going to
52:55refer you on to
52:55a specialist
52:57so we are now
52:59building into the
53:00training for GPs
53:03those sorts of
53:04women's health
53:05gynaecology issues
53:06but it's a very
53:07specific condition
53:10will you commit
53:11to creating an
53:12endometriosis pathway
53:13specifically not
53:14gynaecology not
53:15gynaecology or how
53:17you've just described
53:19yes I mean because
53:21I mean that should
53:22already it's what
53:23you've just described
53:23should already exist
53:24and I'm telling you
53:25it doesn't
53:26and it should
53:27and I accept that
53:28do you see it as an
53:29emergency endometriosis
53:30yes but we also
53:33we need kind of
53:35clarity from
53:35clinical leaders
53:36about like what
53:38is it that's
53:38getting in their
53:39way what blockages
53:40can we unblock
53:41because certainly
53:42as a government
53:42we are trying to
53:43change both practice
53:44and culture
53:45because it has
53:47unquestionably been
53:48disabling for so
53:49many women
53:51it may not always
53:52be but I think
53:55it ought to be
53:55where it is having
53:56that disabling
53:57effect it needs to
53:58be recognised
54:05A few weeks
54:07after her surgery
54:08Madda is back
54:09at the hospital
54:09for her first
54:10post-operative
54:11appointment with
54:12her surgical team
54:17Great to see you
54:19it's been six
54:20seven weeks or so
54:21yeah so officially
54:23seven weeks today
54:24Wednesday yes
54:25good a landmark
54:27how have you been
54:29it's been hard
54:30I won't
54:31sugar called it
54:32it's been
54:33it's been a long
54:35recovery but
54:36obviously I know
54:37it's still early
54:38days
54:39yeah going back to
54:40what we saw at
54:41surgery what we did
54:43and hopefully I'll
54:43contextualise a little
54:44bit of what your
54:44experience has been
54:45since then
54:47we found endometriosis
54:49diagnosis you know
54:49which is exactly what
54:51we were expecting
54:52finding and confirming
54:53that diagnosis I think
54:54is a really important
54:55step and you know
54:56that's something that
54:58of course has its
54:59implications but it's
55:00a positive to show
55:01that we found the
55:02reason why you're
55:03potentially having
55:04these pains for such
55:04a long period of time
55:05going way back
55:07I'm just relieved
55:08that's all
55:08yeah what's relieved you
55:10most is finding that
55:11diagnosis
55:12yeah to finally
55:15found somebody who
55:16actually listened
55:17that was a shock to me
55:20at the same time
55:22I wished I had that
55:23earlier
55:25and yes it's taken a
55:27long time to get here
55:28but at least I'm here
55:30and at least I'm not
55:32crazy
55:33sorry
55:47my own condition
55:49has rapidly worsened
55:50in the last few months
55:53I'm now looking at
55:55one of the only options
55:56left
55:58a hysterectomy
56:01I'm just going to
56:02look once again
56:03this area here
56:04which is the most
56:05likely to find
56:08superficial
56:09dermatriosis
56:10at the very bottom
56:11of the pelvis
56:14an ultrasound scan
56:15can help to see
56:16if the disease
56:17has progressed
56:17and whether surgery
56:19is the right path
56:20for me
56:22are you okay?
56:24sure
56:24you're not
56:25suffering in silence
56:26are you?
56:27no
56:28I'm okay
56:30the pain
56:31I'm experiencing
56:32is now every day
56:34it's not every other day
56:35or every two days
56:36or maybe just half an hour
56:38it's every day
56:39and it's for hours
56:41okay
56:41I don't know
56:43what's happening
56:43inside me
56:44and I think
56:44I need to see
56:46some doctors now
56:46I need to
56:48explore
56:49what they say to me
56:52but what if
56:53the doctor says
56:55have a hysterectomy
56:59it's hard
57:00to know
57:01what to do
57:02because there isn't
57:02a cure
57:03and there isn't
57:04a treatment
57:05but surgery
57:06is a form
57:07of something
57:08and there are
57:12success stories
57:14what if
57:42you
57:42who
57:42who
57:42who
57:42and
57:42with
58:07Honestly, the pain that women like me live with,
58:11you get to a point where having yourself operated on for two, three, four, five hours,
58:18whatever it takes, you'll go through it because what you're living with is not life.
58:57For more information, visit www.fema.org.
58:58Visit www.fema.org.
58:58Visit www.fema.org.
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