Latest / Tom's Hirschsprung's Podcast / Episode 33 - With Rebecca Johnson-Richards

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Episode 33 - With Rebecca Johnson-Richards · Tom's Hirschsprung's Podcast

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Speaker 1: You are listening to Tom's Hirshbrung's Podcast, where our provide
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Speaker 1: a look into the remarkable experiences of the most inspiring
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Speaker 1: people around Hirshprung's disease and sports.
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Speaker 2: Hello and welcome to episode thirty three of Tom's Hirshprung's Podcast.
0:43
Speaker 2: Got something a little bit different for you today. We
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Speaker 2: are going to talk about something that's very rarely talked
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Speaker 2: about ever, really in endometriosis. And joining me to talk
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Speaker 2: about her diagnosis story is Rebel Johnson Richard's Welcome Rebecca.
1:02
Speaker 3: Hello, Hi, Thanks so much for coming on and for
1:08
Speaker 3: being willing to talk about this, because this is something
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Speaker 3: that we were sort of talking of, something that I
1:14
Speaker 3: didn't really know.
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Speaker 2: A lot about at all, that actually affects one in
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Speaker 2: ten women, which is enormous, certainly when we're talking about
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Speaker 2: chronic illnesses, that's a huge number. Would you like to
1:31
Speaker 2: sort of kick us off with your story and sort
1:35
Speaker 2: of starting around about sort of eleven twelve years ago
1:41
Speaker 2: when you were fifteen years of age and starting to
1:43
Speaker 2: sort of feel probably the first signs of vendometriosis.
1:49
Speaker 4: Yeah, yeah, sure.
1:50
Speaker 2: So.
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Speaker 5: Oh, I've been a hairdresser since I was well, not
1:56
Speaker 5: really quite effect. But I've been hairdressing storms fifteen, So
2:01
Speaker 5: I started with like really bad lower back pain and
2:05
Speaker 5: weirdly nay pain. It's like a lot of different things
2:08
Speaker 5: like that, and obviously I went back to my doctors,
2:12
Speaker 5: sent me for an MRIRI. They found there was nothing
2:16
Speaker 5: wrong with my back, but they found like an old
2:19
Speaker 5: varianceist and essentially I just got told I'll be fine,
2:24
Speaker 5: that's it, and just to.
2:25
Speaker 4: Carry on with that.
2:28
Speaker 5: And then obviously I was going back to the doctors
2:31
Speaker 5: for like other little things alongside, like my back pain
2:35
Speaker 5: and things like that, and I sort of didn't really
2:41
Speaker 5: know myself at the time, and I was trying to
2:42
Speaker 5: like look for something why I was in so much pain,
2:45
Speaker 5: because at this point I think I was taking the
2:48
Speaker 5: proxy and which obviously very strong, but I didn't have
2:53
Speaker 5: like an actual direct reason as.
2:55
Speaker 4: To why I was suffering. And it was sort of like.
3:03
Speaker 5: It was floated past me because one of the girls
3:06
Speaker 5: I worked with, Shi was kind of going through a
3:08
Speaker 5: diagnosed sevendo as well, and it kind of clicked and
3:11
Speaker 5: I thought, well, is it may maybe politicistic aubreed or
3:15
Speaker 5: anything like that, And again, like the doctors were just
3:19
Speaker 5: sort of like, od, you need to do exercise, you
3:23
Speaker 5: need to do this, you need to do that. Well,
3:24
Speaker 5: you know, I was I was young, it was fit.
3:27
Speaker 5: I was on my feet all day, so obviously like
3:30
Speaker 5: exercise isn't really going to make a massive difference. So
3:35
Speaker 5: I just kept going back and then it was just
3:37
Speaker 5: obviously like severely happy period It was just like obviously
3:43
Speaker 5: a lot of pain and the pain killers and things
3:45
Speaker 5: in a game. My doctor was just like, oh, it's
3:47
Speaker 5: just happy periods. You just kind of need to get
3:50
Speaker 5: on with it until sort of like properly it was
3:58
Speaker 5: twenty twenty two. My JP that I've seen was a
4:03
Speaker 5: new JP actually, and funny enough, obviously within the end
4:08
Speaker 5: of community there is a little.
4:10
Speaker 4: Bit of a.
4:12
Speaker 5: That's the way it's sort of like to build as such.
4:15
Speaker 5: You know, if you have a male doctor, then I'm
4:17
Speaker 5: going to understand specifically about these sort of things, which
4:21
Speaker 5: is understandable. But my doctor is amazing. He's done everything
4:26
Speaker 5: he passed me doing. And I went to him with
4:31
Speaker 5: like a literal who of like symptoms and it was
4:35
Speaker 5: just like a loveless and I just said, like, this
4:38
Speaker 5: isn't normal to be in best not to pay and
4:41
Speaker 5: my pay was gradually getting worse and worse, and he
4:44
Speaker 5: was like, right, I think it's end all our fauting
4:48
Speaker 5: general guy Andy, which now I've had two surgeries. Going
4:55
Speaker 5: back to that, I wish i'd asked for a specialist.
4:59
Speaker 5: But obviously you don't actually know. It's not like common
5:03
Speaker 5: knowledge to know that a general guyany can't find endo
5:08
Speaker 5: and they also can't remove it. And so I went
5:11
Speaker 5: to say the general Guiane obviously got referred for surgery.
5:14
Speaker 5: Had the surgery, I was told it was perfectly healthy,
5:17
Speaker 5: absolutely nothing wrong with way like that's it basically just
5:23
Speaker 5: to carry on. And obviously afterwards I was quite relieved.
5:27
Speaker 5: I thought, okay, great, but then that's all there's no
5:30
Speaker 5: explanation for why I'm so much pain. And at this
5:34
Speaker 5: point I was taken cordamoral so again and uhh yes yeah.
5:44
Speaker 5: And so then alongside that, obviously I went back to
5:48
Speaker 5: my JP and I said, look, like I know, it's
5:51
Speaker 5: like it's good news. And obviously, like during this time,
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Speaker 5: I was having blood tests, I was having m R
5:59
Speaker 5: I ultra sounds and everything you can possibly think of,
6:04
Speaker 5: and nothing was coming up on anything. And I was like, okay, well,
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Speaker 5: partly this has good for me because endel cannot be
6:14
Speaker 5: seen on ultrasounds, MRIs or anything unless deep infiltrating endel,
6:21
Speaker 5: which is obviously just like a lot way. So of course,
6:27
Speaker 5: like they never actually found anything. So my doctor was like, Okay, well,
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Speaker 5: I'm not happy that you had this surgery and nothing's
6:35
Speaker 5: been found, because there's there's a reason as to why
6:38
Speaker 5: you're in so much pain. There's a reason as to
6:41
Speaker 5: why you're taking these pink killers. And I was like,
6:42
Speaker 5: I'd rather not be taking painkillers because obviously at this
6:46
Speaker 5: point I was.
6:52
Speaker 4: Think about how well they appened.
6:55
Speaker 5: I was like twenty twenty one sort of, you know,
6:59
Speaker 5: and like I was like I don't want to be
7:01
Speaker 5: feeling like ill because of being killers as well.
7:05
Speaker 4: I hate the side effect.
7:06
Speaker 5: Yeah, so I actually asked to be referred to especially
7:11
Speaker 5: in July last year, the specialist went in did the surgery.
7:17
Speaker 4: Obviously I was terrified.
7:19
Speaker 5: I was so scared the kids I was gonna wake up,
7:21
Speaker 5: and we told that it's like nothing wrong with me,
7:25
Speaker 5: because I was like, I'm surely not making this up,
7:28
Speaker 5: like I feel like I'm going crazy, and obviously like
7:34
Speaker 5: you wake up and recovery. At first, I was like oh,
7:38
Speaker 5: I'll not ask all that ask And then I just
7:40
Speaker 5: had asked because I couldn't wait. And she was like
7:42
Speaker 5: the nurse, she was so so kind. She was like,
7:46
Speaker 5: with the foundendo and they've excised it, I'm so proud
7:51
Speaker 5: of you. And I was like, oh, thank you. So
7:53
Speaker 5: it's like such a nice thing to say, isn't it,
7:57
Speaker 5: because obviously it is quite trauma. I haven't work with
8:01
Speaker 5: the sagery. But they found it on my left eye
8:05
Speaker 5: adominal wall, the right abdominal. They found out my sacred
8:09
Speaker 5: ligament in my back. They found it between it's called
8:15
Speaker 5: a U bafold, which is basically it's just based between
8:19
Speaker 5: your bladder and U u urus.
8:22
Speaker 4: They found.
8:25
Speaker 5: Sif that that came back as end or on my
8:28
Speaker 5: philopian tubes and where else it was pretty.
8:32
Speaker 4: Much all that over.
8:33
Speaker 2: I said, although, yeah, it sounds like it's a great deal.
8:37
Speaker 5: Uh huh oh yes, And he said, my us looks adenemiotic,
8:41
Speaker 5: which denemiosis is basically the sister disease to endle. But
8:48
Speaker 5: they can't physically cut it out obviously that there would
8:52
Speaker 5: be like a hysteraction with us. And that's basically where
8:57
Speaker 5: I'm at now. Obviously, when The difference between the surgeries
9:02
Speaker 5: are they can do it's obviously diagnostic labroscoy, they can
9:10
Speaker 5: burn away the angel.
9:11
Speaker 4: Or they can excize it.
9:13
Speaker 5: Burning away doesn't really offer any relief because it's more
9:17
Speaker 5: than like you're going to come back pretty much straight away.
9:20
Speaker 5: Although for myself excision, I had about six weeks paining
9:26
Speaker 5: free and then it's obviously come back. And now I'm
9:28
Speaker 5: one tramadol precablind in Paris anamal, so that's.
9:33
Speaker 4: Basically up it essentially.
9:37
Speaker 5: Yeah, but yeah, that's just basically where I'm at now,
9:42
Speaker 5: waiting for it to see specialists. I've been waiting since January.
9:47
Speaker 5: I don't know where he's at because as specialists I've said,
9:50
Speaker 5: last year's apparently left, so m yeah, so I don't
9:55
Speaker 5: really know what's happening there, but we're just it's what
9:59
Speaker 5: it's really.
10:00
Speaker 2: Okay, Okay, Well, thank you so much for sharing that.
10:05
Speaker 2: And there's there's a couple of couple of questions I
10:08
Speaker 2: haven't and I guess I think doing my research on
10:12
Speaker 2: ENDO that there is a really long wait for diagnosis,
10:16
Speaker 2: and I mean yours was roughly a decade or so,
10:21
Speaker 2: and I think people might be a little bit shocked
10:24
Speaker 2: to hear that that's fairly normal. Yah, in terms of
10:28
Speaker 2: so sort of how hard did you have to sort
10:31
Speaker 2: of really fight to go? I know something's wrong with me,
10:36
Speaker 2: I know, I know did you think it was? And
10:40
Speaker 2: I know you said you went with a list of symptoms.
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Speaker 5: Yeah, So it's honestly it's been like I wouldn't want
10:51
Speaker 5: to have to go through it again, the fight, And
10:54
Speaker 5: how do you feel like women who have to, because
10:59
Speaker 5: like there's just so much you have to like you
11:02
Speaker 5: have to build your own sort of case about it essentially,
11:06
Speaker 5: and it's hard because, like I say, certain doctors would
11:11
Speaker 5: just kind of brush it off. So having like a
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Speaker 5: sport of doctor, like I say, it does make a difference. Well, essentially,
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Speaker 5: I'm trying to think I've literally got a folder with
11:24
Speaker 5: like all of my hospitals, all of my symptoms, just everything,
11:31
Speaker 5: just to back myself up. And as far as like
11:37
Speaker 5: the way I had a goal was when I had
11:40
Speaker 5: my first surgery with a general guy and I went
11:42
Speaker 5: to him with, like I said, the list of symptoms.
11:44
Speaker 4: But what I did was.
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Speaker 5: I actually did a day by day like diary entry
11:51
Speaker 5: walk on my pain out of ten and obviously like
11:55
Speaker 5: symptoms as well, because it's not necessarily like because the
12:00
Speaker 5: people seem to think that it's literally based around your cycle,
12:04
Speaker 5: and sometimes it's not.
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Speaker 4: Your pain can be just like I would say, three
12:08
Speaker 4: weeks of a month, I'm like in pain.
12:12
Speaker 5: One week, I might not have pain, but I might
12:14
Speaker 5: have a migraine.
12:15
Speaker 4: I might have.
12:18
Speaker 5: You know, like muscle aches and things like that. So
12:23
Speaker 5: within that I did obviously brought like I wrote all
12:28
Speaker 5: of that out to obviously advocate for myself. I actually
12:34
Speaker 5: requested from my first surgery the images because I wanted
12:40
Speaker 5: to say for myself because obviously, again you have to
12:43
Speaker 5: research all yourself as well. And there's this guy I
12:47
Speaker 5: follow on Instagram and his I is so good and
12:52
Speaker 5: he's an end or search and he's like a specialist
12:54
Speaker 5: and he actually shows him doing surgery and.
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Speaker 4: Showing like the end or.
12:59
Speaker 5: So I looked at reports and I found okay, I
13:02
Speaker 5: can say and doo myself. So I was like quite
13:05
Speaker 5: baffled by that. But it's literally just you know, I
13:09
Speaker 5: was like at the doctors every week. At this point,
13:13
Speaker 5: I was like, I think I've got war infection. This
13:15
Speaker 5: is happening, and it just started to build up and
13:20
Speaker 5: build up and you've just got to essentially like find
13:25
Speaker 5: out for yourself really, which is really frustrating and it
13:30
Speaker 5: is such a like it's so such a hard way
13:32
Speaker 5: because I had so many people being like, well, there's
13:37
Speaker 5: nothing wrong with you with you, why do you want
13:39
Speaker 5: to like have something wrong? And I'm like, I just
13:43
Speaker 5: would prefer to have an answer likely.
13:47
Speaker 4: Like you know, but.
13:50
Speaker 2: Like I.
13:53
Speaker 5: Went to I was going to ACTUPU chuck for about
13:56
Speaker 5: a year before my last surgery and actually maybe to
14:01
Speaker 5: help try and treat it. No, it was definitely longer
14:03
Speaker 5: because after my first surgery, I had obviously I had
14:09
Speaker 5: the diagnosis and I was like, oh, great, well sorry
14:11
Speaker 5: I didn't have the diagnosis, Like okay, great, well the
14:14
Speaker 5: acupunction has been helping. And then obviously I still continue
14:19
Speaker 5: to have that. And then I had a surgery literally
14:22
Speaker 5: yeah and there and the end all was from all
14:24
Speaker 5: over and I was like like, literally this just goes
14:29
Speaker 5: to show like there's nothing that can physically help it.
14:32
Speaker 5: But the main thing I would want to say for
14:36
Speaker 5: other people especially is if you do think you've got it,
14:42
Speaker 5: asked just to say specialists, because I just think it
14:45
Speaker 5: is a waste of time, will go to say general
14:47
Speaker 5: guy Andy for one, because they're not equipped to a
14:50
Speaker 5: little bit of cont and then number two, I just think,
14:56
Speaker 5: I you know, obviously if you have that option go
15:00
Speaker 5: straight with specialists, it does cut the time down a
15:03
Speaker 5: little bit, i'd imagine, but I think it's partially because
15:07
Speaker 5: obviously they have you go and do all the tear,
15:09
Speaker 5: but then they have you on every single current reception
15:14
Speaker 5: because they're like, all of this will minimize the pain,
15:17
Speaker 5: this will stop your period, so then you won't get
15:19
Speaker 5: anything they try to put you in too, Like I
15:25
Speaker 5: got offered the injection that puts you in a medical menopause. Okay,
15:32
Speaker 5: obviously in my age, I do not want to have
15:35
Speaker 5: that because I just don't know what can happen later
15:39
Speaker 5: on down the line. But yeah, that's essentially what they do.
15:43
Speaker 5: They do, like they push a lot of things like
15:47
Speaker 5: that before the do a diagnostic lab resk. But you've
15:50
Speaker 5: got to like be quite certain about it and you've
15:53
Speaker 5: got to go with your fat Essentially, Yeah, definitely.
15:57
Speaker 2: I mean it sounds like you to orful lot of
16:00
Speaker 2: research beforehand. And there's one one point I do want
16:05
Speaker 2: to pick up on, which is kind of advocacy or
16:07
Speaker 2: advocacy for yourself. Obviously you thought and thought and thought
16:12
Speaker 2: and thought. And I know we we sort of know
16:16
Speaker 2: each other from something that we used to do. There's
16:20
Speaker 2: very much about advocacy and advocating for other people. But
16:27
Speaker 2: I think how important was that for you to think? Right?
16:30
Speaker 2: I need to keep going and going and going, and
16:33
Speaker 2: I need to find an answer even if I'm told,
16:37
Speaker 2: you know it's going to be you know, everything's to
16:40
Speaker 2: be fine, there's nothing wrong with you, et cetera, cetera.
16:44
Speaker 2: How important was that for you to just go right?
16:46
Speaker 2: I need to keep going, keep going, keep going.
16:49
Speaker 5: And you know what, I think it was because, like
16:52
Speaker 5: part of bring obviously theater in general, I would like
16:55
Speaker 5: to have children myself, and I just think if I
16:58
Speaker 5: had a daughter and she so fight like me, and
17:02
Speaker 5: I didn't do anything about it to help myself, then
17:06
Speaker 5: how could I help her? And I just think, I mean,
17:10
Speaker 5: obviously it's not I mean hope free. I really hope
17:14
Speaker 5: to God that she doesn't. Ever I'm sure she doesn't
17:17
Speaker 5: have end or that's my main thing. If she does,
17:20
Speaker 5: I've got the right tools to be able to like
17:23
Speaker 5: advocate by her as well. And it's also for other
17:26
Speaker 5: women too, because obviously within my industry, I work with
17:31
Speaker 5: a lot of different clients and people and mainly women,
17:35
Speaker 5: and we obviously we discussed these sort of things and
17:39
Speaker 5: just getting the word out so people kind of understand,
17:42
Speaker 5: like the actual impact it has on your life is
17:45
Speaker 5: so important to me, and like I just think it's
17:50
Speaker 5: so easy to take it as a negative course and
17:53
Speaker 5: being like this is awful, Like and I have this
17:57
Speaker 5: well as soon as I've gotten diagnosed last time, from
18:00
Speaker 5: like quite high to a load to think like, Okay,
18:03
Speaker 5: I'm actually this is my life. This is how I'm
18:05
Speaker 5: going to be for the rest of the life unless
18:07
Speaker 5: have a hysterectory, but there's no guaranteed that's going to help.
18:11
Speaker 5: But then as all, you know what, like I could
18:13
Speaker 5: help other people, you know, if this just helps one person,
18:19
Speaker 5: and that means a lot. And I just think, like
18:23
Speaker 5: it's good to like I say, touched on it before.
18:26
Speaker 5: But I think, like you know, teaching young girls, I'm
18:30
Speaker 5: always actually to be honest that it's not okay to
18:35
Speaker 5: be in a much pain. You're not actually supposed to
18:37
Speaker 5: have any pain. Like apparently from what I've heard is
18:43
Speaker 5: sometimes like some people just having to take a paracy
18:46
Speaker 5: role and that's it. So and some people just don't
18:50
Speaker 5: even need any pain really at all. And it's it's
18:55
Speaker 5: like people just only think, well, you know, you're supposed
18:58
Speaker 5: to being quite a bit of pain with it, and
19:01
Speaker 5: you're supposed to be beaten quite heavily.
19:04
Speaker 4: You're not actually supposed to you at Also, that's just
19:08
Speaker 4: my main reason why.
19:10
Speaker 2: Yeah, no, very very much. So that I know you
19:13
Speaker 2: mentioned about doing lots of different activities and et cetera,
19:17
Speaker 2: I'd like to change tax slightly and talk about a
19:19
Speaker 2: little bit about your hobbies, because if anybody has seen
19:24
Speaker 2: your Instagram, they will know that you're very keen on embroidery,
19:27
Speaker 2: very talented on Oh but thank you. How did you
19:31
Speaker 2: How did you get into that?
19:35
Speaker 5: I've seen on tik Shok of course and the Ountain
19:39
Speaker 5: of All Knowledge, but yeah, of course all the inflow
19:43
Speaker 5: that you get from there. This girl that embroiders is
19:47
Speaker 5: like a ting shirt with like these cherries on, and
19:50
Speaker 5: I was like, I've got obviously a ruined quite a
19:53
Speaker 5: lot of my clothes with beach and everything else, you know.
19:58
Speaker 5: So I seeing it and I was like, oh, that's
20:02
Speaker 5: quite interesting to do. And I had a germine jacket
20:05
Speaker 5: that I was like, either going to take that a
20:08
Speaker 5: charity open it, but you know, I'll make like use
20:11
Speaker 5: of it, giving a little bit of a new life,
20:14
Speaker 5: and just started doing it.
20:17
Speaker 4: I didn't.
20:18
Speaker 5: I watched one video and did it. But I find
20:22
Speaker 5: it quite like therapeutic. It switches my mind off as well,
20:27
Speaker 5: because obviously, alongside like with her chronic ills, that supper
20:32
Speaker 5: with anxiety, so obviously, like I'll be worrying about just everything.
20:38
Speaker 4: So yeah, that's all I started.
20:41
Speaker 5: My mom, Like, my mom's always been like quite well,
20:46
Speaker 5: she told me how it was. So when I was younger,
20:49
Speaker 5: she's always been into sort of that sort of thing.
20:52
Speaker 5: She used to make like miniature dolls for people to
20:58
Speaker 5: like collect, the like porcelain do and then now she
21:03
Speaker 5: does like a lot of like needle work as well.
21:06
Speaker 5: So I suppose, yeah, I've.
21:08
Speaker 4: Just picked that up.
21:10
Speaker 2: Fantastic. And I think that's a really important point you
21:13
Speaker 2: make about it being a sort of distraction from pain,
21:18
Speaker 2: because obviously with my illness I can relate to that.
21:22
Speaker 2: I've had a lot of stomach surgeries, a lot of pain,
21:26
Speaker 2: and doing something crafty or sort of artwork or something
21:33
Speaker 2: or oud really really helps me and going. I mean,
21:36
Speaker 2: I'm I'm not talented in the slightest in craft art work.
21:41
Speaker 2: I can't draw, et cetera. But just doing something to
21:45
Speaker 2: take your mind off, I mean, the pain is still there,
21:49
Speaker 2: but I've found that really really helps me that if
21:53
Speaker 2: I if I'm doing something it can it can help
21:59
Speaker 2: a lot. And I said with the anxiety as well.
22:02
Speaker 2: Was part of that sort of waiting for the pain
22:06
Speaker 2: to arrive as well or was it? Yeah?
22:11
Speaker 4: Yeah, I think.
22:16
Speaker 5: Because again with end or because of the way it
22:19
Speaker 5: is with your home ones anyways, if found to give
22:22
Speaker 5: you a formal of anxiety anyways, But I just sort
22:28
Speaker 5: of think like I used to. I mean, now it
22:33
Speaker 5: kind of just hits me, so I don't really like
22:35
Speaker 5: have time to probably think about it. But sometimes I
22:38
Speaker 5: can start off being like an object of pain and
22:41
Speaker 5: I can feel it, and then I'm like, I'm like, well,
22:43
Speaker 5: this is going to get Like I know this is
22:45
Speaker 5: going to get worse, and I would expect it to.
22:49
Speaker 5: So yeah, it is obviously it just alongside that. But
22:54
Speaker 5: it's also I find like social situations I get so
22:59
Speaker 5: anxious about because I'm like, I don't know what my
23:01
Speaker 5: opinion is going to be, Like I don't know how
23:02
Speaker 5: tired I'm going to feel, so it obviously affects us
23:08
Speaker 5: quite often.
23:09
Speaker 2: Too pertly definitely, but I guess as well, you know,
23:15
Speaker 2: keeping active. And it was interesting that again reading your article,
23:21
Speaker 2: that one of the ways that they thought they would
23:26
Speaker 2: help by saying, we'll just do some more exercise, which
23:29
Speaker 2: just sounded really really generic to me. We all, I
23:33
Speaker 2: think we all know, you know, exercise, moving, all of
23:36
Speaker 2: that really really good, but I think that just sounds
23:38
Speaker 2: incredibly incredibly generic. Mmy, what did you sort of think
23:45
Speaker 2: of the time when they said, oh, yeah, just do
23:47
Speaker 2: a bit.
23:47
Speaker 5: More honestly, right, like the doctor she just literally watched
23:56
Speaker 5: her tight in on Google exercises, and I was like,
24:01
Speaker 5: why am I here like green?
24:04
Speaker 4: It's cool. I just thought, like.
24:09
Speaker 5: When I was younger, at first, I thought, well, that's
24:11
Speaker 5: just rude, Like I don't really need to do exercise.
24:14
Speaker 5: As I've got older now I know that I have
24:17
Speaker 5: to be so careful, so I have to do like
24:19
Speaker 5: low impact exercise and things like that because it can
24:23
Speaker 5: just kick a flare or off, because like I said,
24:27
Speaker 5: I have no control or b it. So I just
24:30
Speaker 5: think it's honestly, it's a ridiculous thing to say. But
24:35
Speaker 5: like you say, I think it's just your generic thing.
24:38
Speaker 5: I think they just say it because they don't know themselves,
24:42
Speaker 5: and I think because they haven't got an answer for it.
24:45
Speaker 5: And you know, obviously, if JP is just a general practitioner,
24:50
Speaker 5: they can only do so much. They don't specialize in
24:54
Speaker 5: the same thing.
24:55
Speaker 4: But I just think, like.
24:58
Speaker 5: For me as a person, I just wouldn't I wouldn't
25:01
Speaker 5: even ever dream have seen something like that.
25:04
Speaker 2: No, well, I think, yeah, I think it's it's yeah,
25:11
Speaker 2: it sounds incredibly, incredibly generic, and I know it just
25:16
Speaker 2: sort of wrap up a little bit. But we we
25:19
Speaker 2: talked at the start about it being a sort of
25:22
Speaker 2: eight to ten year.
25:25
Speaker 3: Wait.
25:25
Speaker 2: I mean, the average in the UK is eight years
25:27
Speaker 2: ten months for a diagnosis, and in the same article,
25:35
Speaker 2: the government has said that they would like by twenty
25:38
Speaker 2: thirty for it to be down to a year. How
25:42
Speaker 2: possible do you think that is? Having been through yourself,
25:47
Speaker 2: you know what, I.
25:48
Speaker 5: Actually do think it is quite possible, because I think
25:53
Speaker 5: if they cut out a lot of the things that
25:56
Speaker 5: they do then it would probably make more sense. Because
26:01
Speaker 5: for myself personally, I've found no content receptive but I
26:05
Speaker 5: have helped my opinion, it's actually accelerated, it made it worse.
26:10
Speaker 4: And again from doing.
26:11
Speaker 5: Research myself, it doesn't actually like there's no like research
26:16
Speaker 5: or there's no sort of like evidence based that any
26:21
Speaker 5: of the contraceptives actually help I mean personally. I mean
26:28
Speaker 5: some people have had the CAWL I've heard obviously with
26:32
Speaker 5: being and having my Instagram, and they have worked for
26:39
Speaker 5: some people, but then some people have found it hasn't
26:42
Speaker 5: or it's just kind of like a side effects as
26:44
Speaker 5: well or worse. And so that couldn't that a lot
26:49
Speaker 5: of that out would make a lot of sense if
26:52
Speaker 5: they were to have a look at it. There's literal
26:55
Speaker 5: books that you can read that I've been reading myself
26:59
Speaker 5: that literally give you a table of what the contraceptive
27:03
Speaker 5: does to endometriosis essentially. So there's that, and then I think, like,
27:08
Speaker 5: you know, if it's not shown up on blood tests,
27:11
Speaker 5: and I think if it's not shown on maybe like
27:14
Speaker 5: an older sound, I wouldn't like nine times out of
27:17
Speaker 5: tending an m right is a waste of NHS is
27:20
Speaker 5: money in time because you know it's not going to
27:23
Speaker 5: be found then and of course as a studying yeah,
27:27
Speaker 5: I just wouldn't even go and say a general guian.
27:29
Speaker 4: Because, like I say, they know the basic and that's it.
27:35
Speaker 5: I mean, like a general guarany probably. I mean, I've
27:39
Speaker 5: been told this before is I will get pregnant, I'll
27:42
Speaker 5: cure your endometriosis. Really yes, I'm like, okay, because that
27:51
Speaker 5: really gets rid of scar issue. But you know, but yeah, okay.
27:57
Speaker 5: I do you think that if they if they put
28:00
Speaker 5: more time into research in it, and it's not necessarily
28:04
Speaker 5: like wesearch like research and the scientific side of it.
28:09
Speaker 5: It's literally we get to women and have ended we
28:12
Speaker 5: know so much about it. I've had too, and I
28:18
Speaker 5: mean to a certain extent, I'm sore in tune with
28:20
Speaker 5: my body. I'm like, before I went into my surgery
28:23
Speaker 5: last year, I was like, this is where my end
28:26
Speaker 5: or is, and I know it because this is how
28:29
Speaker 5: I feel. And I came around and I was like
28:33
Speaker 5: I knew it. I was like, actually knew it. So
28:36
Speaker 5: if they literally spoke to women, then it would make sense.
28:40
Speaker 5: And there's such a like a repetition of women having
28:45
Speaker 5: gone through all of this, and every woman that I've
28:48
Speaker 5: spoken to it's truck ten years at least, Like you
28:51
Speaker 5: said to get a diagnosis, so like, it just absolutely
28:55
Speaker 5: makes no sense to do everything. Just cut out quite
28:59
Speaker 5: a few of those things, save them the NHS money
29:03
Speaker 5: and also the patient time, and then just skip to that.
29:07
Speaker 5: It would just make more sense. Really well yeah, no, no.
29:12
Speaker 2: That's how it sounds like a very sound plan to
29:15
Speaker 2: be Yes, that that doesn't seem to heavily flaws at all,
29:20
Speaker 2: But no, thank you, thank you ever so much for
29:23
Speaker 2: sharing your story. And just as we sort of wrap
29:25
Speaker 2: up here, and I know you talked about your Instagram
29:30
Speaker 2: and there's a lot of really sort of useful stuff
29:32
Speaker 2: about your journey and everything on that in the future,
29:36
Speaker 2: what would you like sort of I know you're an
29:40
Speaker 2: advocate for ENDO. What would you like that to look
29:43
Speaker 2: like sort of in the future? Do you know what?
29:49
Speaker 5: Like, I really I'm really really great both the opportunities
29:55
Speaker 5: that I gave me that Instagram. I only say that
29:59
Speaker 5: all I will go as well, and I think if anything,
30:05
Speaker 5: I just would like to be able to get my
30:07
Speaker 5: story across, which obviously I've been able to do with
30:10
Speaker 5: quite a lot of things. But my main thing is
30:14
Speaker 5: obviously to help or they're wearing and be supportive of
30:19
Speaker 5: them because it's during the time I was going through
30:23
Speaker 5: my diagnosis. Its quite lonely because obviously, yes, yeah, the support,
30:28
Speaker 5: but it's so hard because people don't understand like what
30:33
Speaker 5: it's like to sort of be told you're absolutely you're
30:37
Speaker 5: perfectly healthy.
30:38
Speaker 4: When you're not.
30:40
Speaker 5: So for me, like, I just love having my Instagram
30:44
Speaker 5: because I get every now and then I'll get like
30:47
Speaker 5: a little message of someone saying I've been being follow
30:51
Speaker 5: your account. You don't understand how useful it is because
30:54
Speaker 5: you gave me like the tools to be able to
30:56
Speaker 5: go to my doctor. I mean, I've had clients, like
31:02
Speaker 5: one of my clientry message Ray saying what would you
31:05
Speaker 5: pack for your surgery? And I was like, oh, I
31:07
Speaker 5: got doing a video, but and I'll send like a
31:09
Speaker 5: full a message about it because to me, I just
31:12
Speaker 5: think like having that support and having someone there just
31:16
Speaker 5: to be able to give advice is the most important thing.
31:18
Speaker 5: But I definitely think having the community and is really
31:24
Speaker 5: really good because I've made some really good friends they're
31:27
Speaker 5: it as well. So that's mainly, like my main reason
31:30
Speaker 5: is just to be able to help others and hopefully
31:36
Speaker 5: in the hopes that obviously, even if I'm just a
31:39
Speaker 5: small part of their journey. That's a big thing to me.
31:42
Speaker 2: That's huge. No, that's fantastic And where can people find you? Honest?
31:49
Speaker 4: So it is Rebecca's dot Journey under school.
31:54
Speaker 5: I think I can't write, I can't remember it's you
32:00
Speaker 5: can just take my name and Rebecca Johnson Richards and
32:03
Speaker 5: you'll find me. That is literally I pause everything on
32:08
Speaker 5: the highest the laws. I've posted my surgery for us
32:11
Speaker 5: as well, just because again I think it's interesting for
32:15
Speaker 5: people to see and if they wanted to, they can
32:18
Speaker 5: literally compare. Yeah, that's where I am. I think that's
32:23
Speaker 5: actually can't imagine it.
32:25
Speaker 2: It's all right. I've just checked it whilst we've been recording.
32:28
Speaker 2: It's fine. It's Rebecca's dot Journey underscore. Oh so I
32:32
Speaker 2: was wait if anybody wants to borrow rebecca a journey,
32:36
Speaker 2: inspirational message and some great embroidery work if you want
32:39
Speaker 2: to have a look as well, But just for me,
32:42
Speaker 2: thank you so much for coming on, for sharing your story,
32:48
Speaker 2: and I wish you all the luck in the future.
32:51
Speaker 4: Yeah, thank you so much for having me on. Thank you,
32:54
Speaker 4: charm I really appreciate my pleasure.
32:59
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Speaker 1: Tom's Underscore Hirshbrun's Underscore podcast. Listen to previous episodes on
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