Latest / White Fox Talking / E93: Endometriosis – Years of Pain, Misdiagnosis and the Fight to Be Heard | Sam Davies & Vicky Taylor

Transcript

E93: Endometriosis – Years of Pain, Misdiagnosis and the Fight to Be Heard | Sam Davies & Vicky Taylor · White Fox Talking

• 0:01
  SPEAKER_05: Hello and welcome to the White Folks Talking Podcast.
• 0:04
  SPEAKER_05: I'm Marcella Valentine, and at the side of me, ever reliable on the controls, is Seb.
• 0:10
  SPEAKER_05: Hi Charlie.
• 0:11
  SPEAKER_05: How are you?
• 0:12
  SPEAKER_05: Good.
• 0:12
  SPEAKER_05: How are the controls?
• 0:13
  SPEAKER_05: Flashing lights everywhere.
• 0:14
  SPEAKER_05: Where's my laptop?
• 0:17
  SPEAKER_05: In the bin.
• 0:19
  SPEAKER_05: Right.
• 0:19
  SPEAKER_05: We'll talk about that there.
• 0:21
  SPEAKER_05: How have you been?
• 0:22
  SPEAKER_05: I've been alright, yeah.
• 0:23
  SPEAKER_05: Do you know how you you make all your kimchi and stuff?
• 0:25
  SPEAKER_05: I do like a four-hour after.
• 0:27
  SPEAKER_05: When I'm in bread, when I'm in set, right, I'm gonna make kimchi and I go get it.
• 0:31
  SPEAKER_05: And it takes me about four hours to do this thing.
• 0:34
  SPEAKER_05: But it's yeah, go on.
• 0:35
  SPEAKER_05: I do sourdough bread.
• 0:36
  SPEAKER_05: Sourdough.
• 0:37
  SPEAKER_05: Where is it?
• 0:37
  SPEAKER_05: It's currently doing the cold proof in the fridge.
• 0:40
  SPEAKER_05: The what?
• 0:40
  SPEAKER_05: Cold proof?
• 0:41
  SPEAKER_05: Or fermenting.
• 0:43
  SPEAKER_05: Proofing.
• 0:44
  SPEAKER_05: Or proving.
• 0:44
  SPEAKER_05: Proving?
• 0:45
  SPEAKER_05: Is it proofing?
• 0:46
  SPEAKER_05: Ferment.
• 0:47
  SPEAKER_05: I suppose it is proofing.
• 0:49
  SPEAKER_05: I don't do you need it yourself?
• 0:50
  SPEAKER_05: Yeah.
• 0:51
  SPEAKER_05: Do you punch it?
• 0:52
  SPEAKER_06: No.
• 0:52
  SPEAKER_05: No?
• 0:53
  SPEAKER_05: Not with anger.
• 0:54
  SPEAKER_06: No, definitely not.
• 0:54
  SPEAKER_05: No, because when I do weekend, you can see me mix that.
• 0:57
  SPEAKER_05: It's like it's usually at a time.
• 0:59
  SPEAKER_05: Who do you think of when you do it?
• 1:00
  SPEAKER_05: Of the world.
• 1:01
  SPEAKER_05: Society, usually.
• 1:02
  SPEAKER_05: Politicians.
• 1:03
  SPEAKER_05: But it's usually yeah, it's one of them sort of I just sit in there.
• 1:06
  SPEAKER_05: I'm in my own space and I'm focused, and is that much the same?
• 1:09
  SPEAKER_05: Yeah, yeah.
• 1:10
  SPEAKER_05: I put a bit of music on.
• 1:11
  SPEAKER_05: What's that music?
• 1:12
  SPEAKER_05: Just listen to a mix by Laguna.
• 1:14
  SPEAKER_05: Oh Laguna?
• 1:15
  SPEAKER_05: Okay.
• 1:16
  SPEAKER_05: Very good.
• 1:16
  SPEAKER_05: I'll I'll share it with you.
• 1:18
  SPEAKER_05: So it's like, is it meditative?
• 1:20
  SPEAKER_06: Yeah.
• 1:20
  SPEAKER_05: Yeah.
• 1:21
  SPEAKER_05: It's a bit of a bit of therapy.
• 1:22
  SPEAKER_05: It's like it's almost like somebody's been talking to you about these all these holistic approaches to life, and now you're listening.
• 1:30
  SPEAKER_05: 94 episodes in.
• 1:34
  SPEAKER_05: So anyway.
• 1:36
  SPEAKER_05: Right.
• 1:36
  SPEAKER_05: Who have you brought into the studio and online?
• 1:38
  SPEAKER_05: Oh, right, yeah, big one.
• 1:39
  SPEAKER_05: The White Fox Talking podcast is sponsored by Energy Impact.
• 1:44
  SPEAKER_05: So, in the studio, welcome Samantha Davis.
• 1:47
  SPEAKER_05: Hello.
• 1:48
  SPEAKER_05: Calling you Sam or Samantha?
• 1:49
  SPEAKER_02: Sam.
• 1:50
  SPEAKER_02: Otherwise, I'll feel like my mum's an air telling me off.
• 1:52
  SPEAKER_05: Yeah, sorry, that's where if people call me Mark, I feel I feel like I'm in caught.
• 1:56
  SPEAKER_06: Yeah.
• 1:56
  SPEAKER_05: Um, and online we have Vicky Taylor.
• 1:58
  SPEAKER_05: Hello, Vicky.
• 1:59
  SPEAKER_06: Hi.
• 2:00
  SPEAKER_06: Hello.
• 2:00
  SPEAKER_06: There we go.
• 2:01
  SPEAKER_05: So we can hear you.
• 2:04
  SPEAKER_05: We've got you.
• 2:05
  SPEAKER_05: Obviously, by the wonders of internet, that doesn't really work in this country.
• 2:08
  SPEAKER_05: Welcome both.
• 2:09
  SPEAKER_05: Thank you.
• 2:10
  SPEAKER_05: We're going to be talking about endometriosis.
• 2:13
  SPEAKER_00: We are.
• 2:13
  SPEAKER_05: Yeah.
• 2:14
  SPEAKER_05: So I would like uh one of you, or both of you, to give us a little brief introduction.
• 2:18
  SPEAKER_05: You could do both, both of you could give us an introduction about yourselves, basically.
• 2:21
  SPEAKER_05: And then don't give us too much because we need to ask some questions and not not be over in 10 minutes.
• 2:25
  SPEAKER_02: So I'm Samantha Leona Davies, Leeds Born and Bred.
• 2:30
  SPEAKER_02: And I find myself here because a 14-year journey to get diagnosed with endometriosis has been um a particular struggle, and everyday mental health has been one of the biggest things to deal with.
• 2:42
  SPEAKER_02: So I think conversation and community is a big healing factor for me anyway.
• 2:49
  SPEAKER_05: 14 years anyway, we'll talk about that, right?
• 2:51
  SPEAKER_05: I can feel rants coming on from all of us.
• 2:53
  SPEAKER_05: But anyway, Vicki, could you give us a little brief introduction?
• 2:56
  SPEAKER_03: Hi, um I'm Vicky and I'm also from Leeds, born and bred.
• 3:00
  SPEAKER_03: My diagnostics journey, I think Sam's probably underestimating her journey actually, staying 14 years, because mine has been over 25 years.
• 3:10
  SPEAKER_03: So I've had issues since I was 10.
• 3:12
  SPEAKER_03: Wow.
• 3:13
  SPEAKER_03: Um and I reckon Sam's probably underestimating her journey there a little bit by saying 14 years.
• 3:21
  SPEAKER_03: So yeah, I'm also a stage four endo girly.
• 3:25
  SPEAKER_05: Wow.
• 3:25
  SPEAKER_05: Yeah, you got in contact with us, Sam, about doing this.
• 3:27
  SPEAKER_05: And I've been a mental health podcast.
• 3:30
  SPEAKER_05: Yeah.
• 3:30
  SPEAKER_05: And I don't know if you've listened to some of our others when we did PME and PMDD back in the early stages.
• 3:36
  SPEAKER_05: Then we've we had the menopausal teacher.
• 3:39
  SPEAKER_05: And as I said when we spoke, it's like, I've got friends or mates.
• 3:43
  SPEAKER_05: What you're talking about, why are you talking about stuff like that?
• 3:45
  SPEAKER_05: And it's like, well, we are a mental health podcast, but it's not all about men's mental health.
• 3:50
  SPEAKER_05: But I think things subjects like this affect they don't just affect the person as number one, it's number two and families and everything.
• 3:57
  SPEAKER_05: So which is why we're really keen to get you on and talk about this.
• 4:01
  SPEAKER_02: Yeah, we appreciate it.
• 4:02
  SPEAKER_02: Yeah, the knock-on effect is is massive.
• 4:04
  SPEAKER_05: So So can we can we ask you?
• 4:06
  SPEAKER_05: Yeah.
• 4:07
  SPEAKER_05: What is endometriosis?
• 4:09
  SPEAKER_02: Endometriosis is cells that are similar to the ones that grow in your uterus that grow instead outside of the uterus.
• 4:18
  SPEAKER_02: So that could be very commonly in the pelvis.
• 4:21
  SPEAKER_02: It can involve your organs.
• 4:23
  SPEAKER_02: A lot of women or patients find it outside of the pelvis as well.
• 4:27
  SPEAKER_02: So as high up as the brain, the nose.
• 4:29
  SPEAKER_02: I think there isn't anywhere in the body that they haven't found it.
• 4:32
  SPEAKER_02: Now, the spleen was quite recent, and that was where they hadn't.
• 4:35
  SPEAKER_02: And it's been found in men as well.
• 4:37
  SPEAKER_02: So this is not just a gynecological disease.
• 4:40
  SPEAKER_02: It affects the whole body.
• 4:41
  SPEAKER_02: And it comes with very obvious for some women heavy periods, but also for me and Vicky, GI symptoms, nausea, diarrhea, lots of different, you know, if it's in your lungs, for instance, cyclically, you could have lung collapses, seizures.
• 4:56
  SPEAKER_02: Yeah, so lots of stuff.
• 4:57
  SPEAKER_02: And the waiting times are immense.
• 4:59
  SPEAKER_02: So women are left to deal with it kind of day-to-day, and um we lean on each other really to do that.
• 5:05
  SPEAKER_02: Yeah, it's a full-body disease, really, and it impacts most systems.
• 5:10
  SPEAKER_02: Inflammation is probably for me the biggest, hardest thing to deal with.
• 5:13
  SPEAKER_05: I think from a lot of the the mental health podcasts, well, we're all mental health podcasts, but the one the way it's in in talked about physical side, then inflammation seems to have a massive effect.
• 5:24
  SPEAKER_05: But that also affects stress, doesn't it?
• 5:25
  SPEAKER_05: And stress, I suppose it's uh a cycle, isn't it?
• 5:28
  SPEAKER_05: Because you're stressed about having pain, that's gonna increase inflammation in the body.
• 5:32
  SPEAKER_02: Yeah, massively.
• 5:33
  SPEAKER_02: It becomes a vicious cycle.
• 5:35
  SPEAKER_02: And in Vicki's case, I do think I'm probably different to her because I did start my periods early, they were heavy, but really the explosion of my symptoms happened after I had my son.
• 5:45
  SPEAKER_02: But for Vicki, her experience has been really, really out there and challenging.
• 5:50
  SPEAKER_05: How common is this?
• 5:51
  SPEAKER_05: Both of you said it took forever to diagnose, I think Vicki mentioned 25 years, you mentioned 14 years.
• 5:59
  SPEAKER_03: So the latest, the the figures that are based on research say that it's one in ten women or those who are born female who have this.
• 6:08
  SPEAKER_03: That's 10%.
• 6:09
  SPEAKER_03: The likelihood is that that's actually an underestimate because we know, and then the recent data's just come out that it takes nearly 10 years on average to get a diagnosis.
• 6:20
  SPEAKER_03: So if you put those two stats together, I think it's probably actually a higher number than one in ten who have endometriosis.
• 6:28
  SPEAKER_03: There's just so many people out there who aren't diagnosed still.
• 6:31
  SPEAKER_03: So it's actually very common.
• 6:33
  SPEAKER_03: It's the second most common gyneological condition, as they still class it in the UK.
• 6:38
  SPEAKER_05: And can you tell us a bit about your journey as sounded with her herself?
• 6:43
  SPEAKER_05: Because yours has been, you were saying yours has been what 25 and longer years?
• 6:47
  SPEAKER_03: 25 plus now.
• 6:48
  SPEAKER_03: Um so yeah, my journey, I had issues from the moment I started menstruation, which for me was quite young.
• 6:56
  SPEAKER_03: That's another very common theme with people with endometriosis.
• 7:01
  SPEAKER_03: So started periods age 10 and was immediately in agony.
• 7:06
  SPEAKER_03: Very heavy bleeding, having to stay off school for a week every time I had my period, lots of GI issues as well, and it it just basically that that just continued and it just got worse as I as I got older.
• 7:20
  SPEAKER_03: And the solution the GPs gave me was to put me on contraception, very, very, very young, which is quite controversial now because they would not give somebody the depotera injection at my age because of the damage it does to the bones, which they now know about.
• 7:37
  SPEAKER_03: But I was put on to the depoprovera at age 14, which is very young for that.
• 7:43
  SPEAKER_03: And prior to that, I had tried two different contraceptive pills, which I'd have a lot of trouble with side effects with, so they weren't working.
• 7:51
  SPEAKER_03: That was kind of the start of my journey, and then it was just people telling you this was normal, this was just how your body was, and to accept it and get on with it and live your life.
• 8:03
  SPEAKER_03: And all the time I was getting more and more poorly, more and more symptoms.
• 8:08
  SPEAKER_03: The symptoms were getting more severe over time.
• 8:10
  SPEAKER_03: I was unable to conceive, and it was it was only at that point that um the doctors really sort of sat back and thought, okay, maybe a referral is due here.
• 8:20
  SPEAKER_03: And that was when I was in my mid-30s.
• 8:22
  SPEAKER_03: A lot of my symptoms were written off as IDS.
• 8:25
  SPEAKER_03: So yeah, I only I only actually got diagnosed two years ago now, Sam.
• 8:30
  SPEAKER_03: I think you probably know because that's when I joined it.
• 8:33
  SPEAKER_03: I only just had the answers two years ago.
• 8:36
  SPEAKER_05: So do you feel or do you think that some of the symptoms were just put in put off as this is just part of your menstrual cycle, you've just got put up with it.
• 8:43
  SPEAKER_06: Yeah.
• 8:43
  SPEAKER_05: Um, because uh because when we spoke about PMDD and the PME, you've got a week either side, and some people haven't, it's a four-week thing.
• 8:51
  SPEAKER_05: It's just it's constant.
• 8:52
  SPEAKER_02: Yeah, I mean I have PMDD, which I was diagnosed with at the same time as end of that that makes things much more sense now.
• 8:58
  SPEAKER_02: But I would have some months where I would have one week where I felt sane and normal, and one week maybe where I wasn't bleeding heavily and still functioning as a normal person in society day to day.
• 9:12
  SPEAKER_02: As you're expected to do this.
• 9:14
  SPEAKER_03: Absolutely.
• 9:15
  SPEAKER_03: I think it's also really important to stress that endometriosis isn't necessarily cyclopal.
• 9:21
  SPEAKER_03: So for me, my symptoms are 24-7 every day of every month of my life.
• 9:26
  SPEAKER_03: It does not matter if I hold my period or not, and that's because of where the lesions have grown inside my body.
• 9:33
  SPEAKER_05: So when the doctor first put you on or prescribed contraception at such a young age, you were in that pain then?
• 9:39
  SPEAKER_03: I wasn't in the level of pain that I got to as I got older because as time goes by, the disease basically spreads.
• 9:46
  SPEAKER_03: It is it behaves exactly like a cancer, it is actually being a lot of doctors are pushing for it to be reclassified as a benign cancer.
• 9:55
  SPEAKER_03: So by the time I got my diagnosis at 35, I was riddled with it.
• 10:00
  SPEAKER_03: But obviously, when I was younger, I didn't have that much endometriosis in my body at that point, so the symptoms certainly weren't as severe, but they were still bad enough for me to have to be off school during particularly during my period.
• 10:15
  SPEAKER_05: Right.
• 10:15
  SPEAKER_05: So you was mentioned there, uh Sam, about one one week a month feeling sane.
• 10:20
  SPEAKER_05: I don't I can't just say it's just it's just pain because I know from bits that I've done before when I've hurt myself and said now sorry, I didn't mean to laugh, Seb.
• 10:30
  SPEAKER_05: But Seb would now with his is going through he's done his back much the same as I did, which was I think it's probably I'm diagnosing you as a ruptured disc game, and it's absolute agony.
• 10:40
  SPEAKER_05: And it and it's when you move and it's the pain that you're in, and it can't be this, just get on with it.
• 10:45
  SPEAKER_05: You know what I mean?
• 10:45
  SPEAKER_05: It's a bit of pain because it's constant.
• 10:47
  SPEAKER_05: So how does that affect mood and state sanity?
• 10:50
  SPEAKER_02: Oh well, I mean, I think that was my biggest struggle with the GPs from when I first started going to inquire about all these symptoms that I had.
• 10:59
  SPEAKER_02: A lot of it was put off to GI like Vicky, but the route that my GPs went down was that I was a crazy lady and they offered me every antidepressant under the sun.
• 11:10
  SPEAKER_02: And I honestly I think recently realizing that I'm neurodivergent, going to the doctor for me, I was like quite literal.
• 11:17
  SPEAKER_02: You tell them everything, they will believe you, they'll sort it out what they say is true.
• 11:21
  SPEAKER_02: So I was going in there and bearing all, and in the outside world, you know, running two businesses and looking after my six-year-old and my partner who was sick at the time.
• 11:29
  SPEAKER_02: And they honestly just went through GI, every antidepressant possible, and then I was going through menopause.
• 11:37
  SPEAKER_02: Just before I got my diagnosis, they were about to start me on HRT.
• 11:40
  SPEAKER_02: But yeah, my biggest struggle was actually just being believed that I was in pain because they literally told me it was in my head.
• 11:46
  SPEAKER_02: And I was almost laughed at a couple of times.
• 11:49
  SPEAKER_02: One of the times after I'd had my second miscarriage, which was a particular head fuck.
• 11:53
  SPEAKER_02: And yeah, that shit messed me up good and proper.
• 11:56
  SPEAKER_05: I mean, for me, looking at that, and obviously I'm no expert in it, but for putting yourself in that position, it's going to fuck you at once because you're actually in that, you're living that.
• 12:05
  SPEAKER_05: You're you're living that, you're feeling that, you're knowing that, and then not being heard as well.
• 12:09
  SPEAKER_05: How frustrating.
• 12:11
  SPEAKER_02: Yeah, I mean, it's it's just an immense cycle, isn't it, Vicky?
• 12:15
  SPEAKER_02: I mean, I was very private and I found it really difficult to tell anybody.
• 12:19
  SPEAKER_02: So for me, I think it also took so long because it took me a while to wake up and be like, advocate for yourself.
• 12:25
  SPEAKER_02: You know, you're seeing the physical effects.
• 12:27
  SPEAKER_02: I was going to the toilet almost every hour and seeing what was coming out of my body, and the doctors were telling me that I was low iron, and but nothing else is wrong.
• 12:36
  SPEAKER_02: So, yeah, for me, I think to get to this point today is it has been to heal my mind more than it has to wrangle with the pain and my body and coming out of surgery.
• 12:46
  SPEAKER_02: I don't know what it's been like for Vicky, but you know, we do talk quite frankly about our mental health together.
• 12:51
  SPEAKER_05: What would you say to that, Vicki?
• 12:52
  SPEAKER_03: I'd say that on our support group, it's the most prevailing issue after the kind of physical symptoms that people come on, and people come on and they are at breaking points and they are suicidal because they have been pushed to the edge by this condition and the isolation that comes with it, the gaslighting from medical professionals, the effect it has on everything else around you in your life as well.
• 13:16
  SPEAKER_03: And then for a lot of women, obviously, there's a significant amount of women and those from female who have infertility issues linked to endometriosis, and like Sam has mentioned about miscarriage and the trauma that comes with any of that.
• 13:29
  SPEAKER_03: And there's a lot of women in the group who have gone through that.
• 13:33
  SPEAKER_03: And you know, it's kind of just almost like expected that that's your lot as a woman.
• 13:42
  SPEAKER_03: I also wanted to just touch on something that Sam had said privately about neurodivergence.
• 13:47
  SPEAKER_03: You are much more likely to have endometriosis if you have a condition such as ADHD and autism.
• 13:54
  SPEAKER_03: There's also a couple of autoimmune conditions as well, which are really comorbidly linked with endometriosis.
• 14:01
  SPEAKER_03: A couple, for example, are POTS and hypomorbile disorder.
• 14:05
  SPEAKER_03: So often, a lot of the time, people who are suffering from endometriosis actually have a really complex health presentation and then also possible neurodivergence as well.
• 14:16
  SPEAKER_03: So it's not just like one battle, it's like you know, a lot of us have multiple things going on.
• 14:22
  SPEAKER_03: We don't know why the links, the research is only kind of emerging at the moment.
• 14:26
  SPEAKER_03: I think it's quite significant in terms of the ADHD and autism link and how that affects it affects mental health as well.
• 14:34
  SPEAKER_05: So do you think the diagnosis takes so much time because of the complexity or controversial?
• 14:39
  SPEAKER_05: Are people being taken seriously?
• 14:41
  SPEAKER_05: You know what I mean?
• 14:42
  SPEAKER_02: Yeah, I think it's twofold.
• 14:44
  SPEAKER_02: I think the average for black and brown women to be diagnosed is 11 years plus.
• 14:50
  SPEAKER_02: I think speaking personally, the barriers are not being believed and going into a system that is highly misogynistic and is already set up with a narrative that periods are gross and they're painful and to shut up and do it.
• 15:03
  SPEAKER_02: And then, yeah, the other side of it is that they don't know much about this condition.
• 15:08
  SPEAKER_02: It presents very differently for most women.
• 15:10
  SPEAKER_02: And I think unfortunately for women like me and Vicky who are complicated, you've been left so long that you end up with this alphabet soup of diagnoses and they don't know what to do with you, really.
• 15:22
  SPEAKER_02: I think the the decades have been left, and knowing that ender does very much act like cancer, it grows its own blood supply, it affects nerves, it's pretty hardcore.
• 15:33
  SPEAKER_02: So I understand now for myself why it was so damaging because of the length of time, but I don't know what the solution is because the problem with the system is so deep-rooted.
• 15:43
  SPEAKER_05: Well, that's what I was just gonna say.
• 15:44
  SPEAKER_05: Do you think part of the problem is that historically a lot of medicine and the textbooks were written by men?
• 15:51
  SPEAKER_00: Yeah, ficking.
• 15:54
  SPEAKER_03: There's a great book called Unwell Women, which is really interesting.
• 15:59
  SPEAKER_03: She's studied into how women have been completely dismissed throughout all of sort of medical development history.
• 16:05
  SPEAKER_03: And I think one of the things that I do think impacts in terms of the diagnosis as well is medical practitioners' awareness and understanding of endometriosis.
• 16:15
  SPEAKER_03: And unfortunately, even general gynecologists don't have a good understanding or graphic of endometriosis, which is just insane because it's it falls under their um remature specialisms, but it's not part of standard gynecology training.
• 16:31
  SPEAKER_03: It's really difficult just to give a personal example.
• 16:34
  SPEAKER_03: When I was I was admitted to hospital with an impacted bowel and we didn't know it was because of endometriosis.
• 16:40
  SPEAKER_03: So I was very, very poorly and I was fairly young at the time, and I was reasonably mobile.
• 16:47
  SPEAKER_03: And the gastrosurgeon said to me, I I asked him because I did my own research and I said, Could this be endometriosis?
• 16:56
  SPEAKER_03: Because I have a lot of gynee issues.
• 16:58
  SPEAKER_03: And he told me, and these were his exact words, that it was impossible to have endometriosis on your bowel.
• 17:05
  SPEAKER_03: That is a complete myth.
• 17:07
  SPEAKER_03: Like it I have endometrios on my bowel.
• 17:10
  SPEAKER_03: So it but he was adamant 100% that it was impossible to have endometriosis on your bowel.
• 17:17
  SPEAKER_03: And that delayed my referral onwards to a specialist service by three years because he put that on my record.
• 17:24
  SPEAKER_05: Even that the state the NHS is anything for you think, you know, that's that's delayed a referral by three years.
• 17:31
  SPEAKER_05: But that's not just all right, I've got to wait another three years for to see someone.
• 17:34
  SPEAKER_05: It's like the three years of stress, the three years of pain, the three years of lost income.
• 17:40
  SPEAKER_05: All the yeah, all the other symptoms.
• 17:41
  SPEAKER_05: And then I mean, the lost income's a stressor, so that's in adding to the inflammation.
• 17:45
  SPEAKER_02: Yeah, yeah.
• 17:46
  SPEAKER_05: And like you say, it's just this big cycle, in it.
• 17:49
  SPEAKER_02: Yeah, it's it's a really vicious cycle that you get into.
• 17:52
  SPEAKER_02: It was actually an AE doctor who used to do bowel surgeries, he said, that suggested to me that I might have bowel ender.
• 17:59
  SPEAKER_02: I'd been on the waiting list about that point, I think 24 months for general gyne.
• 18:04
  SPEAKER_02: So I went and got into debt and paid for an endocrine test at a clinic, just heard of it on a podcast, found a consolation somewhere near Leeds and got a positive test after an hour and somehow manifested my consultant as well at that private appointment of 11 possible consultants.
• 18:22
  SPEAKER_02: But up until that point, I work-wise, I had been devastated, literally closed my business because of it and stopped working.
• 18:29
  SPEAKER_05: Well, this is another aspect to it, to this, and I suppose any medical and mental health issue is that if there are delays in getting diagnosed, if there are delays in getting the right advice and cures or healing, then there's this knock-on effect to the financial to the country, to be fair.
• 18:46
  SPEAKER_05: You know what I mean?
• 18:47
  SPEAKER_02: Yeah, and I think that's why blokes need to be interested in this, because you know, speak to my fella and my son, and they have had to carry a big load for me.
• 18:56
  SPEAKER_05: Well, this is another thing that we talked about lower with the PME and PMDD, it's that it's a shared load, innit, in a f in a family environment or a partner environment, that it's not a a blame, but it's a passing on and seeing your partner in pain and seeing your partner depressed.
• 19:10
  SPEAKER_05: Yeah.
• 19:11
  SPEAKER_05: What do you wish the men understood about it?
• 19:14
  SPEAKER_02: Oh, good one.
• 19:15
  SPEAKER_03: Well, I think it's really important just to like also say that, you know, if it's one in ten women, think about how many uh women are those who are female who might be in your life right now.
• 19:25
  SPEAKER_03: It's not just partners, it's family members, friends, colleagues, co-workers.
• 19:30
  SPEAKER_03: There's so many people who whom you might not be aware of has this condition.
• 19:35
  SPEAKER_03: And I think the biggest distinction for me is understanding that it it really isn't just having a bad period.
• 19:41
  SPEAKER_03: This disease is killing women, you know.
• 19:44
  SPEAKER_03: Some women are taking their lives because they are waiting so long for treatment.
• 19:49
  SPEAKER_03: And it's taking organs as well.
• 19:51
  SPEAKER_03: You know, so many stories we get where women have ended up having to they've lost a kidney because the endometriosis has spread parts of their lungs.
• 19:59
  SPEAKER_03: A lot of the time it's their uterus and their ovaries.
• 20:03
  SPEAKER_03: So it is quite a serious disease, and I don't think it has the level of gravity attached to it that it it needs, and just just believe us.
• 20:15
  SPEAKER_03: You know, we're bone-tired and the pain is to the point where you know you need morphine to get through the day sometimes.
• 20:22
  SPEAKER_03: And I I think that would just be such a great place to start, is just having that level of just believe us to start with when we say these things.
• 20:31
  SPEAKER_03: If someone's saying those to you, don't know what else to add to that.
• 20:35
  SPEAKER_03: It's a hard question.
• 20:36
  SPEAKER_02: Yeah, no, I think that's perfect, Vicky.
• 20:38
  SPEAKER_02: I think the believing part is the biggest for me.
• 20:40
  SPEAKER_02: Luckily, I had a partner who really listened and he trusted that I knew my body.
• 20:45
  SPEAKER_02: Once I knew that the doctors were on it and I started to do my own research and went off on my own determined tangent, I realised in the community how many of the patients with endo had literally nobody that believed them.
• 20:59
  SPEAKER_02: And I think for partners and particular blokes out there who will know somebody or with somebody with endo is to trust that they are trying their best to communicate what's going on.
• 21:10
  SPEAKER_02: I think there's such a madness that can be involved in this process.
• 21:14
  SPEAKER_02: I was literally taken to a point of madness with it that when I did clock in and switched in, I'm glad that he believed that the mad things that I was doing to cope with it, the ways that I was not wanting to end up in an ambulance, an AE, it looked mad, it sounded mad, but it helped me gain control of what was going on and make sense of it and then get to a point where I could advocate for what I needed to get better.
• 21:38
  SPEAKER_02: If I hadn't have had him believe me so hard and trust that process of what I needed to do, then I don't think I would be here telling this story, to be honest.
• 21:47
  SPEAKER_05: That's why I'm so glad that you got in touch with us and get these conversations out there.
• 21:50
  SPEAKER_02: Yeah.
• 21:51
  SPEAKER_02: For sure.
• 21:51
  SPEAKER_05: And it's not like we kept ourselves in that position, you know what I mean?
• 21:54
  SPEAKER_02: It's and some stats actually about, you know, while we're on the dark stuff, half uh So this is from BBC research in 2019 of over 13,500 endo patients.
• 22:05
  SPEAKER_02: Half of them reported having active suicidal thoughts at some point.
• 22:09
  SPEAKER_02: There is a Yale study also that has identified gene overlaps with depression, anxiety, and eating disorders.
• 22:17
  SPEAKER_02: So it's not only a result of endo that we end up with mental health conditions.
• 22:21
  SPEAKER_02: There is some shared genetic mechanism there, which means that it is a whole body condition and there are complex links to mental health and neurodivergence, like Vicky mentioned.
• 22:30
  SPEAKER_05: Well, again, I go back to Laura's um podcast PME and PMDD, and when we're talking about the figures there.
• 22:36
  SPEAKER_03: A lot of the sort of treatments that they push on to women with endometriosis are hormonal.
• 22:43
  SPEAKER_03: So a lot of it is about suppressing and changing your natural hormone levels.
• 22:48
  SPEAKER_03: And the biggest side effect of most hormonal treatments is depression and anxiety.
• 22:54
  SPEAKER_03: Oh, and I was in the thick of that.
• 22:56
  SPEAKER_02: I mean, Vicky and Alice will testify from group chat recently.
• 23:00
  SPEAKER_02: I, you know, probably against medical advice and I would never advise any person with ender to do this, but I've stopped taking my synthetic hormone and I'm planning to have my coil removed because for me, mental health-wise, the trade-off of that little bit of maybe less bleeding, it doesn't really impact my pain.
• 23:19
  SPEAKER_02: But I would rather have a bit more bleeding than deal with the intrusive thoughts.
• 23:25
  SPEAKER_02: And I have not been good on these synthetic hormones.
• 23:28
  SPEAKER_02: And again, you're left out in the wild.
• 23:30
  SPEAKER_02: There's no calling your consultant up or a specialist nurse available, you know, to return your email in a week.
• 23:36
  SPEAKER_02: They are slammed, you know, so we don't hear from them for months.
• 23:40
  SPEAKER_05: So they're slammed because of the numbers.
• 23:41
  SPEAKER_05: Yeah.
• 23:42
  SPEAKER_02: Yeah, yeah.
• 23:42
  SPEAKER_05: That says something anyway, doesn't it?
• 23:44
  SPEAKER_05: That there's a there's a massive failure.
• 23:47
  SPEAKER_00: Absolutely.
• 23:48
  SPEAKER_03: Is it a failure or is it just not being developed quite as rapidly as not being invested in that's the problem is decades of underinvestment in women's health in general has led to, like I said, knowledge gaps within the medical field for those supposed experts.
• 24:05
  SPEAKER_03: I mean the amount of gynecologists who misdiagnose endometriosis is traded.
• 24:10
  SPEAKER_03: Um so you only have a very, very small pool in the UK of endometriosis specialists who know what they're doing and know what they're talking about.
• 24:20
  SPEAKER_03: And those are the only people who can treat complex cases.
• 24:24
  SPEAKER_03: So if you have anything above stage two endometriosis, anything that's cost is deep infiltrating, which means it's eaten into another organ further than I can't remember how many millimeters is it?
• 24:38
  SPEAKER_03: Yeah, or if it involves any other major organ, you can you you immediately, whatever, whoever you're under, they have to stop surgery on you.
• 24:47
  SPEAKER_03: They cannot touch you any further, and you have to be referred to as specialist D FGE surgeon.
• 24:53
  SPEAKER_03: Um and they are few and far between in the UK, and the wait lists are huge across the UK for them.
• 24:59
  SPEAKER_02: There are stories of women being opened up several times and waking up and finding out repeatedly they've not had their surgeries done because the right surgeons weren't in the room, and they were promised as they were going into anesthesia that, you know, this time it's gonna happen, girl.
• 25:13
  SPEAKER_02: And they wake up and they've souped them up, made everything worse, and back on a waiting list.
• 25:18
  SPEAKER_05: Well, there's a stress associated with going into surgery, isn't there?
• 25:21
  SPEAKER_05: And then coming out of surgery and find that you've gone through that and it's then you've added more information because you've got scar tissue and you've gone through an impressive process.
• 25:29
  SPEAKER_02: And Vicky had that situation.
• 25:31
  SPEAKER_00: Yeah.
• 25:31
  SPEAKER_03: I didn't have any scans or any when I finally got to the endometriosis clinic, I was with a BSG surgeon, so that's a specialist, but there was no scan done beforehand.
• 25:42
  SPEAKER_03: I just opted straight away for a laparoscopy.
• 25:44
  SPEAKER_03: So she went in on her own.
• 25:46
  SPEAKER_03: And if I had just had endometriosis just on my gynecological organs, then she would have been able to treat it.
• 25:54
  SPEAKER_03: But it was so widespread, affecting my kidneys and also my bowel that she wasn't allowed to do anything because she needed a bowel surgeon present because the chances of bowel injury um are really high.
• 26:06
  SPEAKER_03: And when you're exercising in endometriosis, then they try to avoid people having stomas, obviously, with that.
• 26:12
  SPEAKER_03: So I had to then wait a further 18 months for a surgery with her and a bowel surgeon before it could be removed.
• 26:19
  SPEAKER_05: It's this thing about oh, you've got to have to wait another 18 months while you're living in that situation, but that situation is like dropping a stone into a pond, isn't it?
• 26:29
  SPEAKER_05: Because it ripples out everything and affects everything, really.
• 26:32
  SPEAKER_05: Yeah, I mean, no one of these stats exist for suicidal thoughts.
• 26:35
  SPEAKER_05: If you're constantly being looked down and they're down.
• 26:38
  SPEAKER_05: Yeah.
• 26:39
  SPEAKER_05: Well, yeah, it's like I mean that's really bad.
• 26:41
  SPEAKER_05: I suppose it's simplifying it, but it's like offering a kid a candy stick and taking it off, innit?
• 26:44
  SPEAKER_05: Right, yeah, you can have a candy stick.
• 26:46
  SPEAKER_05: Where do I get that from so much?
• 26:48
  SPEAKER_03: It's also important to say that once you have you there's no cure for endometriosis, so surgery is just an interim measure to remove it before it kills you, basically, or eats your organs.
• 27:00
  SPEAKER_03: So there's no cure.
• 27:01
  SPEAKER_03: So I will have to have surgeries for the rest of my life, is is the very likelihood because I'm stage four, which is means it comes back if the standards are much more high for me to have it return aggressively in future.
• 27:15
  SPEAKER_03: So there were there are women on our group who have a surgery every 12 to 18 months for endometriosis.
• 27:21
  SPEAKER_05: So have we have we mentioned is it genetic?
• 27:24
  SPEAKER_05: Is this what they don't know?
• 27:25
  SPEAKER_02: Yeah, they don't know.
• 27:26
  SPEAKER_02: Though there was some very, very mad old uh theories which are too ridiculous to repeat.
• 27:33
  SPEAKER_02: But what they do know is that there's a more of a likelihood if it's in your family, you it looks like you're more likely to get it.
• 27:39
  SPEAKER_02: They are doing some early research that maybe it looks like something linked to your gut.
• 27:44
  SPEAKER_02: But no, I don't know whether you know of anything else that they think, but the theories are just theories.
• 27:50
  SPEAKER_02: Just out there.
• 27:51
  SPEAKER_03: Yeah, there's been quite a lot of theories that are then published and then they're lay-proven.
• 27:55
  SPEAKER_03: It's quite hard when you when you're living with this condition to kind of keep up with does that is that being disproven now?
• 28:01
  SPEAKER_03: Is it being debunked?
• 28:02
  SPEAKER_03: Because the retrograde menstruation was a theory for ages, wasn't it?
• 28:06
  SPEAKER_03: And then said that God just loaded rubbish now.
• 28:10
  SPEAKER_05: It just throws more into the bucket of hope, uh, taking it away, and then ways of helping yourself and ways of interventions and taking it away.
• 28:19
  SPEAKER_05: Doesn't sound like there's much clarity.
• 28:20
  SPEAKER_02: No, there isn't.
• 28:21
  SPEAKER_02: And I think the other thing that gets a bit tricky and dicey that I didn't expect is that once you are diagnosed and you maybe reach out to the community, is that there's a lot of charlatans in there or just very, very bad people who want to tell you that they've got a miracle cure.
• 28:36
  SPEAKER_02: And I have obviously heard of that idea, but my God, is it devilish in situations like this when you're already up against it?
• 28:45
  SPEAKER_02: But no, there is nothing authentically hopeful out there.
• 28:49
  SPEAKER_05: Are you aware of worldwide?
• 28:52
  SPEAKER_05: Sort of, is there differentials in or differences in societies and countries and was it wealth-related or you know, third world?
• 29:01
  SPEAKER_02: I mean, what I do know about women's health is that the prevalence of issues that women are those born female, it doesn't seem to be such the case in eastern traditions or in more tribal communities.
• 29:16
  SPEAKER_02: Certainly for menopause, I've um seen a lot of stories that, particularly in the West, we seem to struggle with it and they don't understand why.
• 29:23
  SPEAKER_02: I would say possibly it is environmental.
• 29:25
  SPEAKER_02: I would say it's maybe cultural and how we're told to think about our cycles and our mental health as women and how that ties into your period.
• 29:35
  SPEAKER_02: I think all of that impacts it negatively, unfortunately.
• 29:39
  SPEAKER_05: Can I ask you about any sort of methods, any things that you would do yourself, any practices that may not be recommended, not recommended or disrecommended by the medical community.
• 29:50
  SPEAKER_05: But you know, there may there may be other what what do you discuss in your groups about how to help each other?
• 29:55
  SPEAKER_02: Oh, Vicku, Vicca's a good one for this.
• 29:57
  SPEAKER_02: Yeah.
• 29:58
  SPEAKER_02: Vic has taught me a lot.
• 29:59
  SPEAKER_03: So not not everything works for everybody, is just something really important to say.
• 30:05
  SPEAKER_03: There is a lot of holistic things which are suggested a not it won't treat your endometriosis, but it's more about managing the symptoms and also like your mental health.
• 30:16
  SPEAKER_03: So there's lots of dietary changes that are recommended, such as a low inflammation diet and or a sometimes a low fog mat diet.
• 30:24
  SPEAKER_03: There's emerging research about how like gluten worsens inflammation, so it's about trying to cover some of those things out.
• 30:31
  SPEAKER_03: Stress is a big factor because it's always not good for inflammation.
• 30:35
  SPEAKER_03: You you just mentioned that earlier.
• 30:37
  SPEAKER_03: So about trying to do things to change your lifestyle, which is all easier said than done.
• 30:43
  SPEAKER_03: But yeah, I think in terms of holistic treatments, I I think the most the most things people tend to ask us about really on the group that comes up all the time is stuff to like manage your well-being and your mental health, relaxation strategies like what we get a lot of people suggesting things to do with like mindfulness, to do with like breathwork, um you know, that kind of alternative healing.
• 31:06
  SPEAKER_03: Um which the NHS is catching up a little bit with now.
• 31:09
  SPEAKER_03: Acupuncture is one that's also suggested a lot.
• 31:12
  SPEAKER_03: And finally, the NHS to recognize the acupuncture is a valid treatment for certain conditions.
• 31:18
  SPEAKER_03: And like I say, none of this will treat endometriosis.
• 31:22
  SPEAKER_03: It's about trying to make your life as manageable as it is when your symptoms are there.
• 31:28
  SPEAKER_03: Um I probably missed loads that that gets suggested.
• 31:31
  SPEAKER_05: But would you look at it as two different things, two different things?
• 31:34
  SPEAKER_05: So it's not like you say, it's not gonna treat, it's not gonna help your endometriosis, but it's gonna help your mindset and help your pain levels, hopefully, and pain management, which in turn hopefully reduces your your stress, yeah, which then reduces inf inflammation.
• 31:50
  SPEAKER_02: Absolutely.
• 31:51
  SPEAKER_05: And again, this is only going through stuff that I've gone through myself, and obviously it's in by no means comparison, because I always thought, right, you know, I broke my back, it's gonna be it's gonna get better.
• 32:01
  SPEAKER_05: And if I manage the pain and keep moving and keep fit and eat a proper diet, but when you're depressed or if you've got depression because of the pain, it's so easy to reach out for something else.
• 32:09
  SPEAKER_05: So do we know if there's any links to sort of alcohol abuse and drug taking by going off time there?
• 32:16
  SPEAKER_02: I don't no, no, I don't I don't know.
• 32:17
  SPEAKER_02: I mean, pff again, I would say it for me personally, it actually did the opposite.
• 32:22
  SPEAKER_02: Well really, um, yeah.
• 32:24
  SPEAKER_06: Yeah.
• 32:24
  SPEAKER_02: I think because I found alcohol so inflammatory and yeah, party lifestyle such a trigger to it all that I've not touched it.
• 32:33
  SPEAKER_02: I mean, it's since I've got my head right and understood what's gone on, it's actually been a really positive term for me in my lifestyle in that way.
• 32:41
  SPEAKER_02: But I I would say, yeah, and I would say probably before you're diagnosed, certainly.
• 32:45
  SPEAKER_02: For me, I was using alcohol as as um as something to cope with before I knew actually what I was dealing with because I just was being told that I'm crackers and the doctors were just giving me lots of different types of antidepressants.
• 32:56
  SPEAKER_02: I was like, yeah, let's add a few bottles of wine to that as well every night.
• 32:59
  SPEAKER_02: And that was probably the thing that cracked it for like my partner and family, and they did like a bit of an intervention because they could see I was not coping.
• 33:07
  SPEAKER_02: I was running my own business, kind of trying to look after my child, had parents to help with that, but I was just in like some weird auto dead behind the eyes go mode and using, yeah, a lot of booze and you know, sometimes other stuff to help me through it.
• 33:22
  SPEAKER_05: Yeah, I mean obviously I can't put myself in your position, but I mean, my experience with antidepressants, and this is someone I got diagnosed last year, 29 out of 30 for depression and 30 out of 30 PTSD, but even I got rid of it, I stopped taking the antidepressants because it just made me feel like carrying a wet mattress around.
• 33:38
  SPEAKER_05: No ups, no ups, and there was just you know, if it's uh if there was a scale of 50-50, I'd be at 30 all the time.
• 33:44
  SPEAKER_01: Yeah, just like same, it made me very dead.
• 33:47
  SPEAKER_01: Yeah, it didn't really solve anything.
• 33:49
  SPEAKER_03: So, one thing that comes up a lot on on the group chats I've noticed is a lot of patients' concern around their opiate usage.
• 34:00
  SPEAKER_03: So, you know, obviously we know that codine is addictive and tramadomorphic.
• 34:06
  SPEAKER_03: These are the painkillers that all unscribed.
• 34:08
  SPEAKER_03: Yeah, these are being prescribed to endo patients to get them through, and they're all supposed to be short term, but you know, people when you're waiting 25 and 14 years, they're not the answer.
• 34:21
  SPEAKER_02: And there's a weird kickback with that that I really struggled with, and it's only recently I've got my head around, is that they tell you you have to take these opioids to wait until you get your physiotherapy or your surgery or whatever, but they will give you the addiction talk every time you have to have them prescribed.
• 34:36
  SPEAKER_02: So once a month, it's like taking your begging pot to the doctors to get your opioids that they've told you to take, and then they want to lecture you about addiction.
• 34:45
  SPEAKER_02: Without shortening the the uh waiting list, without shortening the waiting list or having any real interesting painkillers women's health hormones or pain.
• 34:54
  SPEAKER_02: Yeah, which is another head fuck.
• 34:56
  SPEAKER_02: Yeah, that for me was very challenging.
• 34:58
  SPEAKER_02: I found that such a trigger, you know.
• 35:00
  SPEAKER_05: Do you know any incidents of people I'm sure that it happened, but you and personally know people are becoming addicted to painkillers through this.
• 35:07
  SPEAKER_05: Oh yeah, yeah.
• 35:08
  SPEAKER_05: Because it's it's one of them where it's just you know, you've got an it you've got something and it just like I say, it just spreads out, doesn't it?
• 35:14
  SPEAKER_05: You're looking at not leading to worse, but leading to additional issues by not just swapping one thing for another, essentially.
• 35:22
  SPEAKER_02: And again, it for me I would wanted to be very careful with the opioids and I didn't want to be reliant upon them, but I have to use them because I don't want to end up in AE.
• 35:31
  SPEAKER_02: But yeah, I see women who are just like, it takes you to a nice place, and why not just fall into that?
• 35:37
  SPEAKER_02: Because you're gonna be waiting at least 18 months for your surgery.
• 35:40
  SPEAKER_02: And 18 months on channel dollars are long term, innit?
• 35:43
  SPEAKER_05: Yeah.
• 35:43
  SPEAKER_03: I think there's also a lot of where they don't start not working as well, so then you find a tolerance growth up up to the point where not they're not working at all, and then they're presenting in A and E constantly because they need something via intravenous so slippery slope.
• 36:02
  SPEAKER_03: It is, yeah.
• 36:03
  SPEAKER_05: I think when people are starting to really you know need to present to A and E for some intravenous painkillers, then it's like I'll be honest, I had heard of endometriosis and we did some research, although Seb gave my laptop away.
• 36:17
  SPEAKER_05: But you're like, bloody hell, you know what I mean?
• 36:19
  SPEAKER_05: It's like when you're when these painkillers have been being prescribed.
• 36:23
  SPEAKER_05: I have been on Tremodol, and I have been on other things from when I brought me back and stuff like that, but they present their own issues themselves, massive issues.
• 36:30
  SPEAKER_05: Yeah, they do I mean the antidepressants.
• 36:32
  SPEAKER_02: And that's again, that's that's the lottery.
• 36:34
  SPEAKER_02: It's like you're dealing with the rolling of the dice of those types of drugs, and then like Vicky was saying before the hormones, because women like me with PMDD, or if you're neurodivergent, you could be very sensitive to all these things.
• 36:46
  SPEAKER_02: So for me, it's like had my surgery, tried these synthetic hormones, no contact with a nurse or a surgeon, really, and they've sent me cuckoo, so now I'm rolling the dice and just taking myself off it all to do my own thing.
• 36:59
  SPEAKER_05: So you're going back doing like a reset basically.
• 37:01
  SPEAKER_02: Yeah.
• 37:02
  SPEAKER_02: Yeah, I think so.
• 37:03
  SPEAKER_02: Yeah, I can never said the ghost of the day, I was like, I keep on hearing my consultant's head in voice in my head telling me off because I do have an appointment, hopefully coming up next month, where I would have been discussing that, but it was getting too much for me with kind of just dozing off some intrusive thoughts, and I was like, no, I need to take a handle of this.
• 37:22
  SPEAKER_02: So yeah, I'm going full woo-woo, full out where learning about bioenergetics.
• 37:27
  SPEAKER_02: I'm somatically dancing, I am twerking to shake out the trauma.
• 37:32
  SPEAKER_02: So yeah, that was my plan from the beginning, but they bullied me into the hormones, which again, I think you feel like you have to do to a certain extent what they suggest, because otherwise you'll be cast off as well.
• 37:42
  SPEAKER_02: I've given that a go and now I'm gonna do it Sam's way.
• 37:46
  SPEAKER_05: I don't think oh well, I mean, I don't think that's a bad way to go back down to basics and then start and work again.
• 37:54
  SPEAKER_02: Yeah, and I think again, since having the surgery, I really gosh, our consultants are great, and the team there are incredible when you get to them.
• 38:01
  SPEAKER_02: They validate you, they have great knowledge, they understand what is going on, and I trust that he did a good job of my surgery.
• 38:07
  SPEAKER_02: Like Vicky, I had deep infiltrating and my pouch of Douglas, I had a rectum shave.
• 38:12
  SPEAKER_02: I just want to strip back all of the other external noise and stuff that I'm putting into my body and yeah, see where I'm starting at.
• 38:19
  SPEAKER_02: And and it's scary, but I'm actually quite excited to do it.
• 38:22
  SPEAKER_05: Do you know what?
• 38:22
  SPEAKER_05: I was just gonna ask you then, what is your mindset like going into this?
• 38:26
  SPEAKER_05: But you sound doing it's a mission.
• 38:29
  SPEAKER_02: Probably only about five days after hormone, like stopping taking it, and I'm already like, yeah, I feel a bit better.
• 38:34
  SPEAKER_02: I'm not sweating as much.
• 38:35
  SPEAKER_02: I'm not, you know, wanting to jump out of a window sometimes, and yeah, I feel good.
• 38:40
  SPEAKER_05: You laugh that you laugh then about the thought about jumping out of windows, but this is what these are the effects.
• 38:44
  SPEAKER_05: Where's that thought coming from?
• 38:45
  SPEAKER_05: This is what sort of fascinates me about the mind or the mind and the brain is like, where's that coming from?
• 38:50
  SPEAKER_05: That voice telling me to do it.
• 38:51
  SPEAKER_05: Because I have been there and I've spoken about it open on the podcast.
• 38:54
  SPEAKER_05: I've been there.
• 38:54
  SPEAKER_05: Where's that?
• 38:55
  SPEAKER_05: Is that coming from this tablet like it used to do?
• 38:56
  SPEAKER_05: And then when we had Gazo and Gaz Morgan, they were talking about you know, it's probably got the give him anti impressions, and it tells you you will feel so more suicidal for a while.
• 39:05
  SPEAKER_05: What?
• 39:05
  SPEAKER_05: Yeah, so who was suicidal?
• 39:08
  SPEAKER_05: Who was suicidal when we said that final thought?
• 39:10
  SPEAKER_05: And like oh, I mean slightly off topic, but you know, it's all this now.
• 39:14
  SPEAKER_05: It is complex, isn't it?
• 39:15
  SPEAKER_05: Think you mentioned a support group quite a few times and uh and uh in a group chat as well.
• 39:20
  SPEAKER_05: Is this something that is funded or is this something you've set up yourself or oh god, we're going into a rant I can smoke.
• 39:29
  SPEAKER_06: Come on, ladies.
• 39:30
  SPEAKER_03: There is still like I said, I can say even the endometriosis specialists in the medical professional world are so few and far between that there is like nothing that's tailored for endometriosis support.
• 39:43
  SPEAKER_03: Everything is usually run by other patients, so it's usually peer support or it might be run by an endo charity.
• 39:50
  SPEAKER_03: There's a there's a couple which have sort of started up.
• 39:53
  SPEAKER_03: The ours is is just completely peer support, patient-led, and we're just doing it all by ourselves.
• 40:00
  SPEAKER_03: We have no funding, we have no support.
• 40:05
  SPEAKER_03: Um, but we just decided we were gonna make a space because people needed it, and also because we're doing a lot of active campaigning work to make some changes locally in terms of funding for the endometriosis department.
• 40:18
  SPEAKER_03: We kind of needed a space to share and collect data, and it's really grown, hasn't it, in sort of support?
• 40:24
  SPEAKER_02: It has, and I think Vicki's been a little bit like undragging herself there because she really, you know, started all of this with a with a petition, you know, and I just read this petition and felt this energy of like this boss bitch, and I was like, let me fucking chat to her and see what she's about, you know what I mean?
• 40:42
  SPEAKER_02: And no, like I think, you know, I let tick Vicky talk more about the campaign inside of it, but for me personally, that's actually what has got me by the scruff of my neck, reminded me who I am, and thought, no, do you know what?
• 40:54
  SPEAKER_02: There are other women out this, it's as bad as it is for you as it is for them, Sam.
• 40:57
  SPEAKER_02: And you know, they've got the get up and go that Vicky's got to actually do something about it.
• 41:01
  SPEAKER_05: I've lost word that why there's no funding and things like this.
• 41:04
  SPEAKER_05: Have I touched the nerve?
• 41:05
  SPEAKER_05: Oh god, it's all done.
• 41:06
  SPEAKER_05: It's gotta go off.
• 41:07
  SPEAKER_03: Yeah, I mean, obviously, women's health is is very underfunded historically anyway.
• 41:12
  SPEAKER_03: We're pretty much 20 to 50 in some cases 50 years behind other conditions that don't affect one gender.
• 41:20
  SPEAKER_03: It's it's a problem of historic underfunding and like I say, practitioner knowledge.
• 41:25
  SPEAKER_03: The big charities that there are out there, whatever money they have, they have to decide what we're going to use those funds for.
• 41:32
  SPEAKER_03: And quite a lot of them are leaning more into working in parliament to try and make some actual change from the top.
• 41:39
  SPEAKER_03: But the problem is that takes so long to trickle down when if it even ever gets changed, that you know, you've got patients on the ground, you know, nobody to talk to, nowhere to go.
• 41:49
  SPEAKER_02: And again, it's a postcode lottery, isn't it, in this country?
• 41:52
  SPEAKER_02: So, like Vicky said, the the endospecialists are far and few between.
• 41:55
  SPEAKER_02: And when you do find one, I mean, we're lucky we we live in Leeds and we've got two fabulous ones here.
• 42:01
  SPEAKER_02: But let's throw out to, you know, the surrounding areas and they have nobody, and they are figuring out that they have choice and they have voices, and they want to come and see the endospecialist, which is great, but that has a huge knock-on effect when already I think the guy in a department is overrun.
• 42:20
  SPEAKER_02: But then, yeah, you become more niche as you kind of go down that pathway, and there are less and less resources, the waiting lists become longer and longer.
• 42:28
  SPEAKER_02: I mean, their stat is 54 weeks at the moment to see from your first appointment.
• 42:33
  SPEAKER_03: Yeah, they've been two weeks for surgery.
• 42:35
  SPEAKER_03: So your actual once you've got it into the clinic, it's a year's wait to see someone, and then it's a further year plus for your actual surgery.
• 42:45
  SPEAKER_02: And who knows how it has grown since then.
• 42:48
  SPEAKER_02: We've got a l we've got somebody in the support group who I believe has been waiting 94 weeks at the moment.
• 42:52
  SPEAKER_02: Just to be seen.
• 42:53
  SPEAKER_02: Just to be seen by a specialist.
• 42:56
  SPEAKER_02: Yeah.
• 42:57
  SPEAKER_02: So then she will have to wait for that.
• 42:59
  SPEAKER_03: Even getting a medical practitioner to believe you to send that referral into the endometriosis just so hard.
• 43:08
  SPEAKER_03: This is why the start of showing is it's nearly 10 years on average now, because uh yeah.
• 43:14
  SPEAKER_03: I mean your dad against it.
• 43:19
  SPEAKER_05: They lead to endom endomotive oh god, I can't say.
• 43:25
  SPEAKER_05: Yeah.
• 43:25
  SPEAKER_05: Yes.
• 43:26
  SPEAKER_02: Yeah.
• 43:28
  SPEAKER_05: When did you start that?
• 43:29
  SPEAKER_02: Two, three weeks ago.
• 43:31
  SPEAKER_05: Oh, really?
• 43:32
  SPEAKER_05: Yeah, it's not good.
• 43:33
  SPEAKER_03: We were running it, we can't we can't speak too much about this because we were running it to affiliated with somebody else, but we we had to part ways.
• 43:42
  SPEAKER_02: Oh, can we not talk about that?
• 43:43
  SPEAKER_02: I want a slam and we w we we will say I will say because, you know, I think we deserve it.
• 43:49
  SPEAKER_03: We we were told you what we can say and what we can't say.
• 43:52
  SPEAKER_03: So if you want to.
• 43:53
  SPEAKER_02: We we were sacked as volunteers by a national charity.
• 43:57
  SPEAKER_02: Oh really?
• 43:58
  SPEAKER_02: Yeah, we can't say any more than that.
• 44:00
  SPEAKER_03: And the reason why because I was snatched for being by volunteers.
• 44:05
  SPEAKER_03: No, we had we had a very large group of about 700 patients and and we put I put endless unpaid hours every week into running the support group online and we did speakers, guests meetups, and yeah, as soon as we the campaign has grown so big I asked Sam to set us up some social media for it because it was just kind of hovering on change.org but didn't really have anywhere else to be Victor's inbox was popping off.
• 44:34
  SPEAKER_03: Yeah, and it was always coming to like my people contacting my personal thing all the time.
• 44:38
  SPEAKER_03: I was like, I can't cope with this anymore.
• 44:39
  SPEAKER_03: So as soon as we launched that stake, the large national charity felt it was a conflict of interest for us to run that social media space and also be support group volunteers for them, which is very upset.
• 44:55
  SPEAKER_02: Which we were doing for free.
• 44:56
  SPEAKER_03: Yeah, and I mean I devoted over a year of my time.
• 45:00
  SPEAKER_02: Yeah, Vicky had been doing it for 18 months.
• 45:01
  SPEAKER_02: She had done fundraisers, she had arranged meet in person, get a free venue, do prizes for women at celebrity speakers.
• 45:10
  SPEAKER_02: My girl threw her heart into it and they slapped her in the face.
• 45:13
  SPEAKER_02: So that's as much as we will say about it.
• 45:15
  SPEAKER_02: But these national charities to be honest.
• 45:20
  SPEAKER_02: It's their loss.
• 45:20
  SPEAKER_02: Yeah.
• 45:21
  SPEAKER_02: I just don't know why they're in it.
• 45:22
  SPEAKER_03: But their group, their group had to shut down because there's no volunteers.
• 45:26
  SPEAKER_03: They now have no volunteers.
• 45:28
  SPEAKER_02: So there's 700 women who literally sometimes life or death because we have suicidal posts going up there, they just literally took it overnight.
• 45:37
  SPEAKER_02: No consultation with us, no kind of gap, no plans.
• 45:40
  SPEAKER_02: 700 women, just no access.
• 45:42
  SPEAKER_05: This sounds like sort of service that you're getting about the endometriosis anyway.
• 45:46
  SPEAKER_02: Yeah.
• 45:47
  SPEAKER_02: From a national charity that is supposed to be representing women who have endometriosis.
• 45:53
  SPEAKER_05: Well, I I mean, national charities for me shouldn't really exist.
• 45:56
  SPEAKER_05: It's a failure of a system, it's a failure of a society that we have to have all these charities.
• 46:01
  SPEAKER_05: But wow.
• 46:02
  SPEAKER_05: Do you feel better for getting that?
• 46:03
  SPEAKER_02: Yeah, I do, I do.
• 46:04
  SPEAKER_02: Yeah.
• 46:05
  SPEAKER_02: We just some demons.
• 46:07
  SPEAKER_05: Yeah.
• 46:07
  SPEAKER_05: That's fair enough.
• 46:08
  SPEAKER_05: You can say what you want, on it.
• 46:09
  SPEAKER_05: I mean, we're not quite liable for all I would say.
• 46:11
  SPEAKER_00: Sorry, Vicka.
• 46:12
  SPEAKER_00: No, it's fine.
• 46:14
  SPEAKER_00: It's the truth.
• 46:15
  SPEAKER_00: Yeah, it is actually.
• 46:18
  SPEAKER_05: But by us putting this out there now, uh very shortly, then hopefully people will hear about the group anyway.
• 46:24
  SPEAKER_00: Yeah, yeah.
• 46:26
  SPEAKER_05: And obviously you've got freedom of reign with that group, yeah?
• 46:30
  SPEAKER_01: Yeah, we do, yeah.
• 46:31
  SPEAKER_05: And you're speaking from a comeback company nearly 40 years, well, 40 years of experience.
• 46:36
  SPEAKER_01: Mm-hmm.
• 46:37
  SPEAKER_05: Yeah, absolutely.
• 46:38
  SPEAKER_05: And there will be other people out there with longer and more experience.
• 46:41
  SPEAKER_02: So and they're already finding us, yeah, and the stories are uh harrowing.
• 46:46
  SPEAKER_02: What are your plans with this group?
• 46:48
  SPEAKER_02: Ficky, what are the plans, girl?
• 46:50
  SPEAKER_03: Well, obviously, the the original reason the group was set up was solely linked to the campaign work that I started.
• 46:57
  SPEAKER_03: And basically, just to give you a context of that, we're trying to pressure the West Yorkshire ICB and the NH or NHS England to fund leads as a specialist um endometriosis center to increase their funding basically to meet the demand that they've got.
• 47:13
  SPEAKER_03: Yeah, and it's it's been going on for a while and and things take a while.
• 47:17
  SPEAKER_03: And so that was originally the point of the space was for me to be able to collect data from patients, to share updates about the meetings with a lot of MPs involved.
• 47:27
  SPEAKER_03: Um Councillor Andrew Scott has been absolutely amazing.
• 47:30
  SPEAKER_03: He's the head of Leeds Health Scrutiny Board, and they have back just 100%.
• 47:36
  SPEAKER_03: But because obviously of what's happened with the national charity, we've now said, Well, all that time we were giving to the support group, actually running it as a support space, then why don't we just do this on the group as well?
• 47:49
  SPEAKER_03: So it we've we've opened it up to people and said, look, just use it how you used to use the other space.
• 47:54
  SPEAKER_03: And this week in particular has been quite busy, hasn't it?
• 47:58
  SPEAKER_03: People reaching out for advice, asking questions about you know things.
• 48:03
  SPEAKER_03: A lot of the time it's even questions about wait lists, and we were quite limited as to what we could say sometimes working with the other organization because of they they don't they have rules around you're not allowed to mention hospital names or practitioners or speak about this or speak about that, whereas we don't really have that in our own.
• 48:20
  SPEAKER_05: Surely that should be in the open.
• 48:21
  SPEAKER_03: It is, yeah, we can be completely transparent and things like people coming on and saying what's almost like they don't want to be talking to each other.
• 48:29
  SPEAKER_02: Yeah, but no, like Vicky said, we've opened it up like that, and it has just instantly become really busy in quite a positive way as well.
• 48:39
  SPEAKER_02: Like I've been really surprised by it being, you know, it got big quick.
• 48:42
  SPEAKER_02: We had 700 in the old group, this one's got to 150 quite quickly, lots of new faces and different faces, and instantly they've like vibed and they're jumping on and giving each other advice.
• 48:52
  SPEAKER_02: And what does this look like on your NHS app?
• 48:54
  SPEAKER_02: Has anybody tried this particular hormone?
• 48:56
  SPEAKER_02: You know, is anybody on a waiting list for pelvic floor physiotherapy?
• 48:59
  SPEAKER_02: It's really actually quite encouraging to see.
• 49:02
  SPEAKER_02: It's lovely.
• 49:03
  SPEAKER_03: My my idea behind that space now is very much it it's about empowering these women and the patients with endometriosis to have access to organisations that might be able to help them.
• 49:15
  SPEAKER_03: So we have loads of signposting links to anything at all that could be like we have stuff for domestic violence, don't we?
• 49:22
  SPEAKER_03: We have things for like financial advice, balance water advice, like and just empowering people with knowledge about how to help themselves with advocating for themselves through the medical side of the journey, but also just like improving their own well-being and get getting through this battle because that's what it feels like for most people.
• 49:44
  SPEAKER_05: When I had conversations or when I met people I had conversations with people that had PTSD and we were open about PTSD, that little click and sharing that information and just chatting, I made some really, really good friends through that because you just think actually used a bad word about myself then, but I actually I'm not as weird as I thought I was.
• 50:04
  SPEAKER_05: And just having that just there was this and you're not alone.
• 50:08
  SPEAKER_05: And you're not alone, exactly.
• 50:09
  SPEAKER_05: So I mean my mate Brett Woods when we sadly lost, demons got him, but we used to have some of the darkest humour about PTSD.
• 50:16
  SPEAKER_05: And I suppose you've got that it's like having it's like having, you know, someone's someone's arm around your shoulder, isn't it?
• 50:22
  SPEAKER_05: So just that feeling of oh, I'm not actually you know what I mean.
• 50:27
  SPEAKER_02: It's proper camaraderie.
• 50:28
  SPEAKER_02: I mean, you know, I'm a I'm a daughter of uh of a military dad in who was in the RF for, you know, so I was at air cadets, so I really like get a lot from that type of camaraderie and you know, having done EMDR therapy for PTSD and finding a community there, but finding Vicky and Alice, like something certainly clicked between us.
• 50:49
  SPEAKER_02: I think we all have a similar skewed view on things and we're willing to put our necks out there for other people and for what's right.
• 51:00
  SPEAKER_06: Brilliant.
• 51:01
  SPEAKER_02: We've got big mouths, but mine's is the biggest.
• 51:04
  SPEAKER_02: But no, truthfully, I think the biggest thing for me that's been empowering is to see how we are helping the other women and pattern on skills.
• 51:14
  SPEAKER_02: You know, I've done you know a bit of activism, so I'm gonna teach them a bit about that.
• 51:18
  SPEAKER_02: Vicky is really good with pathways for healthcare, and we've got Alice who's a real cheerleader, and we've all found that we can tell each other our stories, but actually it's helpful to navigate your pathway as well by doing that.
• 51:33
  SPEAKER_05: Yeah, I suppose it's um similar to obviously mental health podcasts, that's what we do, but they it's that thing of everybody I get labelled under PTSD.
• 51:42
  SPEAKER_05: But if there's a thousand of us labelled under in that PTSD box, our individual journeys it can be totally different.
• 51:48
  SPEAKER_05: Some can be massively different, some similar, but it's all yeah, totally true.
• 51:53
  SPEAKER_00: Yeah.
• 51:54
  SPEAKER_03: I think the space for me as well, like I I find, and this is a lot less talked about, I've noticed in public conversations about endo, is there's a lot of shame and stigma attached to this condition because some of the symptoms that come with it are quite gruesome.
• 52:10
  SPEAKER_03: I think is probably a fair word to say and and not very pleasant, and there's a lot of like stigma about can I ask if this is normal?
• 52:19
  SPEAKER_03: Can I put a picture up and say this just came out of me?
• 52:22
  SPEAKER_03: Like, do I need to go daily?
• 52:25
  SPEAKER_03: You know, I'm this is the kind of things we're talking about, and and I just want women and people who have this condition to feel like they have a space where they could come on, and they can do that anonymously.
• 52:34
  SPEAKER_03: We have that option on the group, so it doesn't show your profile.
• 52:37
  SPEAKER_03: And they you know, if they want to put a picture on, if they've just had a decide decidual cast come out of them, which is a horrible experience, where you lose basically part of your uh uterus lining just comes out in one, and you might think you're giving birth to an alien because that's what it looks like, and you're thinking, What the F is this?
• 52:55
  SPEAKER_03: Like, you know, and you don't know where to at.
• 52:57
  SPEAKER_03: So, you know, I want like a space where women can put up the, you know, the the things and not have any shame attached to you know, this this condition has some really, really horrible things that that and your and scary things that your body does that traditionally are sort of associated with like taboos because they're seen as being like dirty, or we can't talk about that, you know, we can't talk about poo, we can't talk about blood.
• 53:21
  SPEAKER_03: So I think that's really important as well, that that's removed.
• 53:25
  SPEAKER_03: And you know, people can talk about the things that are happening to their bodies openly if they need to.
• 53:31
  SPEAKER_02: And some women still do need encourager, and they're like, what is it, the abbreviation to TMI, too much information?
• 53:36
  SPEAKER_02: I'm always like, There is no such thing as too much information with me.
• 53:40
  SPEAKER_02: But I'm the original oversharer.
• 53:42
  SPEAKER_02: I'm not gonna do it now, but yeah, show me all your pictures, document it all, bring it all to us, speak to us, because I think you need to get it out as well.
• 53:51
  SPEAKER_05: I think you do it if there's no no way, no sort of like this thing with an official official pathway.
• 53:59
  SPEAKER_05: Um I've had it, I've heard I've known it, I've heard it said by I'm not gonna name them or something, but some very learned people saying one of the biggest problems we've got in this country is the NHS.
• 54:08
  SPEAKER_05: And what they say with that is because people rely on it.
• 54:11
  SPEAKER_06: Yeah.
• 54:11
  SPEAKER_05: But then if you're trying to rely on something, if I had to relied on NHS going through my pizza, I wouldn't be here now.
• 54:17
  SPEAKER_05: I had to go out and do my own thing and find me and find your stuff.
• 54:21
  SPEAKER_05: Um but that was a very lonely experience, whereas you've got this group now and that sharing of information, yeah.
• 54:26
  SPEAKER_05: And people could choose to accept it or not, I suppose.
• 54:29
  SPEAKER_02: Absolutely, and and I think they do take it or leave it, and I think we've got a real broad spectrum of what people do bring to the group, or you know, for instance, going back to like what tools people use, it it is quite different, and it seems really nice that people feel safe enough to say, you know, this is the weird thing that I do to deal with my pain, whatever it is.
• 54:47
  SPEAKER_02: And there's some women who are like, Oh my god, I'm gonna give that a try because why not?
• 54:51
  SPEAKER_05: I just had a like a comparison there with like, you know, this thing of Andy's manqueb where people turn up and they go in and they share that space and talk.
• 54:59
  SPEAKER_05: I know it's slightly it'd be slightly different because they have a you know, they ask three questions or four questions and then and open it up.
• 55:05
  SPEAKER_05: And that's been such a massive thing, and the thing about men's mental health has been such a massive thing about talking, and then you're now offering the space, aren't you?
• 55:12
  SPEAKER_05: It's brilliant, I'll be honest that I do.
• 55:14
  SPEAKER_03: Yeah.
• 55:14
  SPEAKER_03: Well, we were saying earlier about sort of how this might impact on men as well.
• 55:19
  SPEAKER_03: I I think it's also really important to have a space where you can come and talk about sex and relationships as well, and how it's impacting on that aspect of your life because some people won't feel comfortable to fully divulge the the gory details of this disease sometimes to their partner, and you know, that's all very individual and depends on the relationship dynamics and length of the time and stuff.
• 55:44
  SPEAKER_03: But there's lots of things where people come onto the group and they want to talk about they can't have sex anymore because it's too painful.
• 55:50
  SPEAKER_03: So, how do how I'm worried I'm gonna lose my partner?
• 55:53
  SPEAKER_03: Like, you know, conversations like that, which you know, where else are people supposed to go to have those conversations?
• 56:02
  SPEAKER_00: It's true.
• 56:02
  SPEAKER_00: I want to talk about masturbation behind the group.
• 56:05
  SPEAKER_00: Sorry, guys.
• 56:07
  SPEAKER_00: Just throw that out of there.
• 56:08
  SPEAKER_00: Sam, you can actually inward.
• 56:10
  SPEAKER_02: I know, I don't know, I know, but I just think no it is.
• 56:13
  SPEAKER_02: I think we are getting much, much better with that.
• 56:15
  SPEAKER_02: I see, I follow a lot of very saucy accounts on Instagram that tell people that are instructing kind of people how to get a bit more comfortable with themselves.
• 56:23
  SPEAKER_02: But I am telling you now, there were moments when there was nothing else, and I wanted to tap into my own energy.
• 56:30
  SPEAKER_02: And do you know what?
• 56:31
  SPEAKER_00: It does work for me sometimes.
• 56:34
  SPEAKER_02: Joking aside, you know, I think because ladies for so long have had so many conversations that are so taboo, we do with the lovely anonymous part of it, you do see it all spilling out, and I literally welcome all of it.
• 56:47
  SPEAKER_02: I'm on that group.
• 56:48
  SPEAKER_02: Oh Charlie.
• 56:50
  SPEAKER_01: Well, did you miss that sentence?
• 56:52
  SPEAKER_05: As are there many other guys on that group.
• 56:55
  SPEAKER_03: We we said that our group was not going to be specifically only for people uh with that condition because we wanted to grow people's and allies' understanding.
• 57:06
  SPEAKER_03: Right.
• 57:07
  SPEAKER_03: We want we want partners to join, we want parents, maybe dad who's got a child who's potentially have struggling with periods.
• 57:14
  SPEAKER_03: We want them to come on and learn about the condition and see how it's affecting women and patients with this condition, you know, firsthand.
• 57:22
  SPEAKER_03: Because I think that's the best way to spread information and understanding.
• 57:26
  SPEAKER_03: So that's why we have the anonymous option on for when people do come on and talk about those very in-depth sub subjects, and obviously we asked for a content warning as well.
• 57:37
  SPEAKER_03: You know, you can choose to scroll past that if you're not ready for that level of like detail yet.
• 57:42
  SPEAKER_03: But I I didn't want it to be a space that was strictly only for patients with the condition because um I think it's really important that we had we had well, we had some people, didn't we, in the previous group who became on, like somebody asked if they could join because they their partner has it and they wanted to educate themselves.
• 58:02
  SPEAKER_03: I don't know.
• 58:02
  SPEAKER_02: We had a single dad of a teenage girl as well who had just been diagnosed, who asked to join the group because he just knew nothing.
• 58:08
  SPEAKER_02: And my god, he was lovely.
• 58:09
  SPEAKER_02: But yeah, he actually said he gained a lot from it just by asking other women uh kind of what they would advise him to know as you know, a dad of a teen girl who's just been diagnosed with it.
• 58:20
  SPEAKER_02: And we've seen so many more young ones as well, which frightens me to death.
• 58:24
  SPEAKER_05: Yeah, it's quite scary, isn't it?
• 58:25
  SPEAKER_05: Yeah, it is.
• 58:27
  SPEAKER_03: I think that's because of awareness though, because obviously it has been in it's been a buzzword for a while in in headlines.
• 58:34
  SPEAKER_03: There is more coverage and more people talking about it, and I do think that more people are going.
• 58:40
  SPEAKER_03: I think going, okay, maybe I'm not having a normal period, maybe I should go and to the doctors and speak about this and feeling like impact.
• 58:48
  SPEAKER_03: So there's that's great.
• 58:49
  SPEAKER_03: I think that that side of the work needs to be done and is amazing.
• 58:53
  SPEAKER_03: But what worries me is that all of those people are just gonna get funneled into the wait list for the end of each rest of special.
• 59:00
  SPEAKER_03: There's gonna be a massive level now.
• 59:03
  SPEAKER_03: And then what happens then, you know, the it feels like the system might collapse, you know.
• 59:08
  SPEAKER_02: And I'll be damned if they leave the young ones to end up like us, you know.
• 59:11
  SPEAKER_02: I just gosh, it's um, you know.
• 59:14
  SPEAKER_02: Well, we know I mean, I know that sounds funny, but do you know what I mean?
• 59:18
  SPEAKER_02: I know what you mean.
• 59:18
  SPEAKER_02: Two decades down the line, and you know, you're in a real bad stage for area where Vicky is like Well, I I lost my fertility because of it.
• 59:27
  SPEAKER_03: I was told had I been diagnosed even ten years ago, I probably would have been able to have children, but it's made me completely fertile.
• 59:34
  SPEAKER_05: What would you say to a young woman or maybe a young listener who's experienced severe pain and who thinks maybe going through things, keep being told that it's just part of being a woman and get on with it.
• 59:46
  SPEAKER_05: Well, what will you say to them?
• 59:48
  SPEAKER_05: I think you're laughing at the time.
• 59:50
  SPEAKER_02: I would I yeah, Vicky's got really good practical advice, but mine would be very just like find your warrior woman energy.
• 59:58
  SPEAKER_02: I think find a safe person if you can't take with you, if you're not being listened to at the GPs.
• 1:00:03
  SPEAKER_02: Yeah, do you know what?
• 1:00:04
  SPEAKER_02: I had to say to my partner, come with me because your white male first will probably get me heard a little bit harder.
• 1:00:10
  SPEAKER_02: And it did.
• 1:00:10
  SPEAKER_02: So I would say take somebody with you if you're not being listened to, find a group like cars to to learn about what you need to say when you get into those appointments, and just do not take no for an answer.
• 1:00:22
  SPEAKER_02: Keep going.
• 1:00:23
  SPEAKER_05: Go on, Sam.
• 1:00:24
  SPEAKER_05: I love it.
• 1:00:25
  SPEAKER_05: What a force of nature.
• 1:00:28
  SPEAKER_05: What's your answer to that, Vicky?
• 1:00:30
  SPEAKER_05: Same question, not the force of nature.
• 1:00:33
  SPEAKER_03: I am well, yeah.
• 1:00:34
  SPEAKER_03: I mean, like Sam said, like I'm more kind of like on the clinical pathways side of things, and I would be like straight away, I well, quote Jesse's rule at them because if it's if that's law now, and if you are in there three times about the same problem and you are not referred on Jesse's law, throw it at them and they will have to refer you on to the specialist.
• 1:00:53
  SPEAKER_03: And then educate yourself about endometriosis scans.
• 1:00:56
  SPEAKER_03: Who is you who is doing your scan?
• 1:00:58
  SPEAKER_03: Are they a qualified endometriosis specialist?
• 1:01:00
  SPEAKER_03: Because if they're not, they're probably going to tell you your scan's normal and it might not be.
• 1:01:04
  SPEAKER_03: And that's don't let that fob you off.
• 1:01:08
  SPEAKER_03: In fact, also like quote quote quoting nice guidelines at people.
• 1:01:11
  SPEAKER_03: As soon as you arm yourself with knowledge, I found that medic them in the medical practitioner world, people take you a lot more seriously.
• 1:01:18
  SPEAKER_03: If you go in and say, Well, hang on a minute, the nice guidelines guidelines say this, or we're breaching Jessie's rule here.
• 1:01:24
  SPEAKER_03: As soon as you they're like, Okay, well, you know what you're talking about, and they tend to buckle up and listen, then don't they?
• 1:01:31
  SPEAKER_00: Yeah.
• 1:01:31
  SPEAKER_00: And also join your group.
• 1:01:33
  SPEAKER_02: Yeah.
• 1:01:34
  SPEAKER_02: Yes, absolutely.
• 1:01:36
  SPEAKER_02: Because Sam will teach you how to be a bedroom activist and shout louder and shaky tits.
• 1:01:41
  SPEAKER_02: And um Vicky will give you some really great practical advice.
• 1:01:46
  SPEAKER_02: I'm just really in awe of how the petition's flown recently as well.
• 1:01:49
  SPEAKER_02: We've had a recent push again.
• 1:01:50
  SPEAKER_02: That's what Vicky started, kind of started all of this.
• 1:01:53
  SPEAKER_02: And I think well, we're not far off three and a half thousand signatures now.
• 1:01:57
  SPEAKER_02: But no, arming yourself with knowledge, I think, is probably the biggest game changer because yeah, they do clock you and they think, okay, this person knows what they're talking about, so we won't bother wasting their time.
• 1:02:08
  SPEAKER_02: We'll actually push them on to the next bit now.
• 1:02:10
  SPEAKER_05: We are gonna have to wrap up before we because we'll get thrown out.
• 1:02:13
  SPEAKER_05: Oh deal.
• 1:02:14
  SPEAKER_05: So, how long we've been talking?
• 1:02:19
  SPEAKER_04: No.
• 1:02:20
  SPEAKER_03: We need a two parts today.
• 1:02:22
  SPEAKER_04: Yeah, yeah, well, well, we'll see how it goes.
• 1:02:25
  SPEAKER_04: Yeah, I'm sure there's something.
• 1:02:27
  SPEAKER_03: We didn't even talk about endometriosis and the impact on work and jobs and stuff.
• 1:02:32
  SPEAKER_05: Yeah, it's so much.
• 1:02:34
  SPEAKER_05: I've got an idea that I may mention to Sam afterwards, but I'm a bit scared that she might she might be too warrior, too warrior for some of us.
• 1:02:41
  SPEAKER_05: We'd have to have a lot of things.
• 1:02:45
  SPEAKER_05: We'd have to have doors that phone.
• 1:02:46
  SPEAKER_05: So uh yeah, we are gonna have to wrap it up, unfortunately.
• 1:02:49
  SPEAKER_05: So thank you both very, very much for joining us.
• 1:02:53
  SPEAKER_05: We will get this out as soon as we're uh when Ted's edited it with we need obviously anyone that has any of the uh anybody.
• 1:03:02
  SPEAKER_05: Yeah, it's just one of them.
• 1:03:03
  SPEAKER_05: But what I'm so glad we got you.
• 1:03:05
  SPEAKER_03: So sorry if you if you've heard my cat throwing up at one point as well.
• 1:03:14
  SPEAKER_00: You probably don't know.
• 1:03:17
  SPEAKER_00: She does know.
• 1:03:18
  SPEAKER_00: She knows which part of us is insane.
• 1:03:20
  SPEAKER_03: I know it only happened six pounds.
• 1:03:23
  SPEAKER_03: Oh shit, I thought that's me.
• 1:03:24
  SPEAKER_03: All right.
• 1:03:25
  SPEAKER_05: Top it all going wrong.
• 1:03:27
  SPEAKER_05: Top it all, top it all off.
• 1:03:28
  SPEAKER_05: The phone's going right.
• 1:03:30
  SPEAKER_01: Reminding me to pick up my child.
• 1:03:31
  SPEAKER_05: We will wrap up.
• 1:03:32
  SPEAKER_05: Don't disappear just yet, Vicate, but we will say thank you for joining us.
• 1:03:36
  SPEAKER_05: Thank you very much.
• 1:03:37
  SPEAKER_05: Yeah, and we will get this get this story out there.
• 1:03:39
  SPEAKER_02: Cool.
• 1:03:40
  SPEAKER_05: Take care, folks.
• 1:03:41
  SPEAKER_02: Thank you.
• 1:03:42
  SPEAKER_02: Bye.
• 1:03:44
  SPEAKER_04: And if you would like to support us and help us keep the podcast going, then you can go to buyers a coffee or you can click that on our website, whitefoxtalki.com, and look for the little thank you.