Tihesia, Freja’s Volunteer  0:01
Hi everyone and welcome to Freja's Open Up the Conversation series. Before we start, I want to do a quick introduction for anyone who's listening and hasn't heard of Freja's before. Freja's is on a mission to change the way that society talks, thinks and feels about conditions that can impact our reproductive health.
We believe that a key step in creating real and meaningful change is building a better understanding of how conditions like fibroids, endometriosis, adenomyosis, premature ovarian insufficiency, among many other conditions, really affect a person's day-to-day life.
Therefore, Freja’s have been collecting and sharing written stories from all over the UK and now are inviting some amazing guests to help us open up the conversation further. In this series of chats, we want to take a deep dive into topics we know can be difficult to open up about when it comes to conditions
that can impact our reproductive health so that we can all learn and inspire each other. So in this instalment of Open Up the Conversation, we're going to be discussing the topic, navigating a condition that can impact your menstrual or reproductive health as a black or brown person. Before I hand over to our two guests, to introduce themselves. I also want to mention that nothing discussed here is intended as medical information. This is purely the participants sharing their own real experiences. So if you're listening and you're worried at all about your reproductive health, you should consult a GP immediately.
If I can start by asking you to introduce yourself, Saff, if you can tell us your name, the conditions that you live with and a brief explanation of these. You can talk about how long you've lived with the condition and also about diagnosis or sort of when you were diagnosed because I know that these can offer
and differ how long someone's lived and when they've been diagnosed. I'll hand over to you.

Saff   2:00
Yeah.
Hi, so I'm Saff. I live with endometriosis. I was officially diagnosed three years ago, but I started experiencing symptoms when I was 16, so it's about 12 years ago now. Endometriosis is a systemic inflammatory condition where tissue similar to uterine lining grows outside of the uterus. For me, I started experiencing painful periods and pain outside of my periods, which sort of triggered that initial investigation. Alongside this, I also live with dysautonomia and chronic migraine.
So dysautonomia is an autonomic nervous system disorder. So in terms of how it impacts endometriosis for me. When I was sort of experiencing symptoms of this condition, it increased the bleeding that I experienced during my periods. And that caused me to feel more lightheaded, more faint, and made it a bit more challenging in terms of how to manage. And then with the migraines, it meant I then experienced hormonal migraines as well.

Tihesia, Freja’s Volunteer  3:21
Thank you for your introduction. I'm sure that we'll talk a lot more about sort of that overlap of conditions and navigating diagnosis with lots of symptoms that can overlap. Emma, are you okay to introduce yourself?

Emma    3:35
Yeah, so my name is Emma and my pronouns are she, her. I'm A black mixed race woman, so I'm African, Caribbean and white British. I was, so I've been diagnosed with polycystic ovaries, endometriosis, fibroids and also a polyp as well.
I was diagnosed with the fibroid and PCOS three years ago and the endometriosis and the polyp was discovered during surgery a year ago for the fibroid. And I probably have been living with very heavy periods, very painful periods, I would say for probably at least 10 years. And prior to that, I do think that I probably had PCOS from a very young age because my periods would come maybe two or three times a year up until, you know, my mid 20s. So

Yeah, there's definitely been a lot of things going on for quite some time. However, I just want to say that post-surgery a year ago, I am really starting to feel very well in myself. And after the fibroid, which was 15 centimetres and a 4 centimetre polyp and endometriosis was removed. I'm really starting to see a massive difference with my overall health and wellbeing. So it was quite a journey to get to that surgery and very stressful. However, I'm really pleased to sort of come out the other side a year later and actually seeing a lot of improvements in my life.

Tihesia, Freja’s Volunteer  5:27
Wow. Yeah, again, just that overlap of symptoms and that discrepancy between how long you guys have been living with these symptoms to how long the diagnosis has been. And we'll definitely get into that as well. And yeah, I know you mentioned about PCOS. Something exciting has happened recently with PCOS being renamed. So it now goes by the name of polyendocrine metabolic ovarian syndrome as well. So that's OK.

Emma    6:00
Yeah, I'm glad you said that because I forgot what it was. I'm glad we have the doctor with us to remember the term.

Saff   6:03
He.
Yeah.
It's A mouthful.

Tihesia, Freja’s Volunteer

So yeah, PMOS is the new acronym for it. So I think that encapsulates a lot more about the sort of metabolic consequences of things like diabetes, insulin resistance, the cardiovascular

Tihesia, Freja’s Volunteer  6:52
impacts as well. And I didn't introduce myself, which is very rude of me. I'm Tihesia, I'm a volunteer at Freja's. I'm a doctor that works in sexual health and I'm living with endometriosis, possibly adenomiasis as well, I found out recently. I was initially diagnosed

Emma    6:54
Yeah.

Tihesia, Freja’s Volunteer  7:12
diagnosed in 2020. I think looking back, I do remember having quite painful periods, but then I was on a progesterone only pill for years, so I didn't have a period for years. And then it was when I came off that around sort of 21, 22, that I was like, something's not right.
And yeah, it started off as superficial and then sort of on recent scans, it looks like things have progressed a little bit. So I'm in that process of re-accessing care, thinking about surgeries and trying different sort of hormonal medications and things like that.
So yeah, thank you both for introducing yourselves. We'll start with the first question. So this is towards you, Emma. Could you tell us a little bit about what your experiences are of conversations around menstrual health in black and brown communities?

Tihesia, Freja’s Volunteer  8:12
In regards to that and thinking about over the time of those conversations and whether things have changed, do you feel that your relationship with your own menstrual health has changed over years? So A two-part question.

Emma    8:19
Yeah, this is a really great question. So part of the work that I do is work in specialist work with women of colour, black women and women of colour, and around wellness. And I've had many conversations with women and
There's some themes that come up. One of them is around pain being dismissed. This is something that comes up a lot where
people will present to A&E, they'll present in lots of, you know, really, they're in really significant severe pain. And this is actually diminished and dismissed and people are, you know, sent home, given, you know, painkillers or in some situations, they're not given painkillers because they may be seen as seeking.
pain medication. So there is this dismissal, which can occur, which is a really, really damaging actually, because it really gaslights people into thinking, is there really something wrong with me? Am I, am I making this up?

Emma    9:38
Is it, is it, you know, is it as severe as I think? And also this area around, you know, yes, it's been dismissed from outside the counity, but also there is this internalising of feeling as if you have to carry on with
with the pain and getting on with it, you know, and that our pain is not as important as other people's pain and feeling this need to push through regardless of how much pain, how much suffering you're in. So there's a couple of things. And I think for me personally, I definitely waited
to see my GP about the pain, because I think it was, you know, I think that was a part of, is it really that bad? You know, am I am I overreacting to actually quite severe symptoms? And also this normalisation of
pain, that actually your periods are going to be painful, just get on with it. And yeah, I think there is, yeah, there's definitely a lot of discussions around safety going into healthcare environments and trust. Is it going to be a place where I'm going to be listened to? Is it going to be a place that I will

Emma    11:03
receive good care or is it a place that I will be, you know, experience racism because it does happen and we will have that feeling of more anxiety, more stress around going into doctors, hospitals. So
There is a lot of things that we have to think about even before we get into that position. And, you know, maybe that lack of trust could also be why people are seeking help later. And that fear is, am I actually going to be cared for? Is this going to be somewhere that potentially something bad is going to happen because we've seen the statistics of black women and childbirth. And, you know, we hear stories from, you know, friends, from our community, from people, from elders and their experience of lack of care and actually leading to really significant loss of life, you know, so it is, yeah, it's, there's a lot to consider that's going on in the backgrounds of our minds that we may be not even aware of that these things are part of our experience of going to seek help.

Tihesia, Freja’s Volunteer  12:08
No, completely. I was just noting down some things as you were speaking there about sort of the drug seeking behaviour and, you know, my auntie's had, she's suspected endometriosis when she was younger and she described similar things.

That normalisation of symptoms, almost gaslighting ourselves that things are okay. And yeah, that waiting period. I think I'm going to be probably quoting the Cysters report quite a lot through this, but

Tihesia, Freja’s Volunteer  13:05
It's, you know, they've shown through their research that there is a big discrepancy in ethnically diverse counities in terms of how long it's taking for people to be diagnosed. And people are reporting, I mean, they said that 83% of people have been told that they were making a fuss about their symptoms.
And they've felt that their symptoms were dismissed before they were diagnosed. So everything that you're saying that there are the stats to back it up. Being in these counities, do you feel like that's changed your view of your own relationship with your menstrual health throughout that time or

Tihesia, Freja’s Volunteer  13:46
Do you feel like, like how do you feel that those have fed into your views around your own menstrual health?

Emma    13:46
I would say since I've been more open about my own struggles, that has really helped me a lot, actually. So that has helped me to feel less alone and being able to talk about it openly because once you start talking about it, then lots of people start to say, oh, yeah, I know.
I've been going through this, I've had surgery. People that you may have known for quite some time, they then open up about their experiences. And yeah, I think for me, what's helped is having that counity of support and people who understand what it's like and being able to kind of hold some of them anxieties, holding them stressors and saying,

Emma    14:35
Yes, it's valid, but you still need to go and get the help. So a bit of that compassion, but also know you need to advocate for yourself because you're in a serious situation and you can't avoid seeking help, which you do, even though you might be very anxious, you're very scared, which I was.

Emma    14:55
Um, you know, so I think...
Opening up has encouraged me to be more empowered about my own health. And I'd just like to mention a support group that was really helpful for me was the guidance suite with Dawn Heels. Joining that group at a time when I was going to have surgery was absolutely a lifeline because
many women in that group had had surgery and they could, you know, they were sharing their stories. And we also had different medical professionals come into the group that we could actually speak to. And that helped me so much to keep going with the surgery and not back out and not feel like I can't do this.
So I just want to mention the power of counity and actually supporting each other is just, you know, it's a godsend. It really is. It makes such a difference in, you know, your overall wellbeing and feeling like you can do it because it's very difficult to manage all on your own. So many different symptoms and pain, but if we can just be a part of that group, even for an hour once a month, it just gave me a little bit of hope that yeah, I can get through this. It's hard, but there is a way through this.

Tihesia, Freja’s Volunteer  16:17
Yeah, and I think that combination of having people with lived experience and also healthcare professionals as well, because I think everyone is an expert of their own experience and everyone's experiences are valid, but sometimes if someone's had a negative experience that can really put someone off as well, something that might be really positive for them.

Tihesia, Freja’s Volunteer  16:38
So having that balance of someone that can give both sides and sort of the more medical side, but also that lived experience is absolutely invaluable. Completely agree.

Emma    16:38
Definitely.
Yeah.
Yeah, definitely. Yeah. And there was people, there was people who do the surgeries in the group that you could, were talking to you. And that was, you know, we had several people who were surgeons and, you know, getting that sort of talking to somebody because it's so difficult to actually speak to your consultant once you put up.

Emma    17:10
(…) have been put on the list for your surgery, that's it. There is no way you can get hold of them and ask them a single question. So just to ask them questions where you're not quite sure about this, and what do you think about this? Just again, it's alleviating some of that unknown and those anxieties, which if you don't have anyone to really support you with that it can be, you know, you can completely avoid getting any treatment, which can go the other way where your symptoms are going to progress. And yeah, it's about getting help at the right time.

Tihesia, Freja’s Volunteer  17:39
Yeah.
Saff, does this sound similar to you and your experiences or were there any sort of big differences in what Emma was mentioning there?

Saff   17:58
I think when I sort of first started experiencing symptoms, it was very easy to talk to my mum about it because she was very open about periods and all that sort of stuff when I first started experiencing them. I think the problems we had was there was not very much information about endometriosis at all. So I had lots of different like ultrasounds and nothing came up. And then he put me on a list for a laparoscopy. But what I didn't know is the importance of having a trained surgeon specifically in that area. So I ended up having surgery which from (…) nothing. And so I was like, given the pill, go back to your GP is probably IBS as well. And then that was it. There was no fault care, no sort of information on the fact that, you know, I was on the combined pill that was probably not helping my symptoms, even though it
sort of manage the period pain. The oestrogen over the years was probably just feeding into things to the point when it did stop working. I was hit with a lot of pain, a lot of bleeding, a lot of challenges. And then there was nothing from there apart from try the Mirena before surgery or then have the surgery. And it was sort of a shock to my system in terms of how much pain there was because once I'd started the combined pill, that was fine for most of my adult life until I was about 24 and everything just sort of bam, hit at once. So that was sort of the issue we had. We sort of believed in everything the doctors told us, that they like everything is true. You know, that's what you expect. You hope the person you're seeing knows the most about your condition, but that's not necessarily true. Like there's a big difference between an endometriosis specialist and a general gynaecologist or gynaecologist specialised in a different area.

And then sort of in terms of talking about periods, you know, I grew up in a Pakistani Muslim household. It was only reserved for like women. And it was only between me and my mum, maybe my aunts and stuff like that. And I remember it was like, my mum was pretty good at dispelling some of the cultural myths because my grandma would say you weren't allowed to shower until your period was over. I never really understood why. Mum was like,

Tihesia, Freja’s Volunteer  20:04
Yeah.

Saff   20:29
You know, you don't have to, you shower when you want, and that shouldn't change things. But I don't know what her reasoning was. And like, we grew up with Ramadan and when you're on your period, you don't fast. That was sort of like, oh, you were supposed to sort of just hide when you were eating. But my dad, like, there's me, my sister, my mum in the household. My dad's well aware of what's happening, but it was just such a strange thing. And we never really talked about it until
My symptoms got really bad and I was having to go to hospital, having all of these appointments. It was severely impacting my physical mobility, you know, not being in work, that sort of thing. I kind of just had to explain to my dad what endometriosis was because I only at that point learned properly what
the definition was, you know, the fact that I needed to see a doctor that was specialising in that area. And that's probably why when I was younger, things weren't found either properly at the time or the follow up care wasn't good enough. And
It was it was difficult in terms of I think it was more difficult for me to talk about it. My dad did just listen. And then now it's very easy to talk about any of my conditions with my with my dad. And it then has made it easier to talk about it with
Actually, anyone has gone from feeling really awkward about it to not feeling awkward about it at all.

Tihesia, Freja’s Volunteer  22:07
Yeah, it sounds like, you know, I'm really glad that you're, you mentioned at the beginning, like your mum was always really open when your symptoms first started and when your periods first started. And I think, yeah, that transition of, you know, things feeling a bit awkward to talk about, you know, this is impacting your health and it's something that I think that's the thing with lots of things under the umbrella of women's health, right? It excludes men out of the conversation. And I really think sometimes that label can be more harmful for these conditions. I think it needs to be something that everyone is involved in talking about, because it does impact so much of your life and sort of that transition at the time, obviously you look back and it's maybe been a smooth transition, but at the time things probably felt that that very first conversation with your dad maybe felt quite awkward. And I feel quite similar as well.

Ilaughed when you said about the IBS thing. I think our stories are quite similar. I also, I had a lap and it was superficial endo they found in a couple of spots and I was told I don't have endometriosis and I should be grateful that I don't have endo because it was just a couple of spots of superficial.

And then on my discharge letter, it said maybe it's IBS. So yeah, that did make me chuckle. It's obviously, you know, there's multiple people that have had this experience and it's not just me and you that I've heard say this as well. So yeah.

Saff   23:32
Is ridiculous.
Yeah.

Tihesia, Freja’s Volunteer  23:46
just goes to show that these experiences are, you know, it's not just a couple of us, there's a lot of people having these same experiences of, you know, realising that, you know, the person that's doing your care needs to be an endometriosis specialist. And yeah, the
family dynamics. I only realised about a year ago that so many of my aunties have endo and fibroids. Why hasn't that been a conversation that...

Tihesia, Freja’s Volunteer  24:16
we've been having before? Why do I only know that now? After I've already sought care, I could have gone into the appointment armed with, you know, I've got a really strong history of endometriosis and, you know, is it because, and then I spoke to my dad and he was like, yeah, yeah, your auntie, she always really, you know, in her period, she just was locked away in her room and it's like,

Tihesia, Freja’s Volunteer  24:38
you know, why are these things not spoken about? And I think there is, yeah, that sort of air of taboo around things and it's just women's health and it's, you know, that's for the women to deal with. But it does, you know, when things go wrong, they go really wrong. And I think everyone needs to be involved in those conversations.

Tihesia, Freja’s Volunteer  24:59
Thank you for that, both of you. Okay, next question is for you, Saff. And I think you've touched on this a little bit already as well, but a bit more of a deep dive into times where you felt dismissed.
in the doctor's room and what that felt like for you. And in those situations, either during that or sort of into future appointments that you've had, how do you then advocate for yourself in those situations?

Saff   25:37
So yeah, there have been a few instances. The first sort of one that, when I talk about how, when I mentioned, they mentioned it was just IBS, at that point, I didn't really feel dismissed because I thought everything had been done at that point. But it was the first time I saw emergency care because I couldn't manage the endometriosis pain at home. I'd maxed out on the codeine I had and I just, I was in tears and couldn't control it. So we went in and I was seen by a nurse and you know, I listed all my symptoms, what I was under investigation for and you know, what I'd taken and what hadn't worked and what
I wasn't allowed to take. For me, I don't tolerate oral NSAIDS. They made IBS for me worse because I do have those sort of symptoms. And the nurse didn't really want to hear about the fact that I was under investigation for endometriosis. She didn't.
really sort of take into account that I didn't tolerate those. And I say, she's like, well, you've had the codeine and all I can offer you is naproxen and you're refusing that. And I'm refusing that because I won't tolerate it and it's going to make me feel worse. And after examining me, just said it's musculoskeletal pain.

I just lost it. I ended up shouting at her, which felt it was it was very strange. Like I've never really shouted at a medical professional before. It's not something I would think to do. But I was like, well, you can't let me go home like this. You've not listened to what I've said. I need to be seen by gynaecology this evening or tomorrow, like I need to be seen by somebody else. I can't just be seen by you. And that's when she left and then did ring gynaecology for me and I had to get my partner in from the waiting room because I was so distressed about what had happened because that was the first time I really felt let down because I was like, well, I've come here, clearly in a state, clearly in a lot of pain.
I've exhausted all the options I have available to me at home and then for someone to be like, well, you're not taking what I'm offering, so you should probably just go home. That was sort of really, really challenging to deal with and that made
experiences with going to seek a most of care way more challenging for me to do. I never really wanted to do it. And a lot of the times I've had to be pushed by my partner to go and seek it because I'm not managing at home. And then I had it quite a lot later on when I, when I had my Mirena coil removed.

.

Saff   28:17
When I spoke to my GP, they sort of just said to me, there's only one person in the surgery that inserted them and removed them and she wasn't my regular GP. And she said, I think you're going to be worse off without it, so you should probably just stick with it. And I felt like at that point, okay, I guess
I don't really have an option. So I stuck with it for a bit longer, but I had nagging pain after the surgery with it. It really affected my moods. Like I didn't feel emotionally stable on the Mirena coil. And then it took a lot for me to get it removed because when I went to see gynaecology at the hospital, again, this was up for some reason. I'd never really been referred to the endometriosis team. It took a long time to get to that.

But I was seen by a general gynaecologist who talked about have I tried to get pregnant or would I be considering that?
Then she asked me if I wanted it removed there and I mentioned I really struggle with pain. I couldn't have the coil inserted during surgery before surgery because it was so painful. And I became aware through sort of online groups that you can have gas and air to have it removed. So it's supposed to help ease the pain. And when I sort of mentioned that, the doctor got really puzzled, but I was very thankful that the nurse in the room was like, oh, we do it on this ward. I'll go find out to make sure. And that meant I could have that procedure done in less pain. Whereas if with internal exams, it would have set me back quite a lot. It was really challenging. And then it kind of got more and more difficult once I got diagnosed with a dysautonomia and a chronic migraine because going into the room, I then had to
sort of be more aware of my other conditions. I sought care for pain last year, and the consultant wanted me to go back on hormonal suppression. I thought, well, I want to wait a bit of time because I've just started this new drug for my migraines. If I start both, I'm not going to know what side effects or what, even though it's like,

Oh, I think that's definitely your next step. But I can't start that now. That might have to be three or four months down the line. What can be done in the meantime to sort of try and help my symptoms? And that's when they sort of got me referred for pelvic floor physiotherapy and stuff like that. But it's again, having to be aware of those things.

I've had a... When I've been to A&E and I've exhausted a lot of the endometriosis investigations, I've had several scans and because my symptoms last year overlapped with a lot of different conditions, so there's pelvic vascular conditions, because I have the dysautonomia, they sort of go hand in hand, so I needed to investigate those. But again, I'd gone in to hospital because I couldn't manage the pain at home. And the A&E doctor was like, oh, it's probably just your endometriosis. And I'm like, well, these endometriosis specialists have told me at this point, it seems quite unlikely.
It's causing all your pain. You need to investigate these things. Why can't you help me in doing that? You can't just say it's the endometriosis when everybody's been telling me it's not. And that's the problem you come across when you have multiple conditions, is that it's very easy to just blame it on the other one and just say, oh, it's just that you just need to see this person go back to the gynaecology or go back to whoever. And that's it. But I'm here. I'm not managing at this point. Last year it was on morphine at home. You know, it was severe. I couldn't walk on my left leg. I was out of work. All of these things were severely impacted, but it's just being passed from one person to another to another without any of those groups actually talking to each other as well. And I think a lot of the situations where I felt the most dismissed have been in emergency care, which makes it then very hard to go and seek it because you just think, oh, well, I may as well just stuff it out for a few days at home and it might be all right. But that puts you in a dangerous position because a lot of the pain in the pelvic and abdominal area could be other things aside from an endometriosis flare up that are worth being investigated or worth looking at. But you know, you might not necessarily go, you know, I know someone who, you know, had a really bad kidney, was having a really bad kidney infection, but didn't go because they just thought, oh, it was just the endometriosis and it's unlikely to get help for it. You know, I've had times where the pain has been so severe, it's woken me up and I'm like, oh, do I go, do I not? And then you kind of have to decide, well,

It's quite late now. Do I go, do I go now? Do I go in the morning? There are so many things to weigh up and for me, sitting up in A&E for a long time is too challenging. That puts me at risk of fainting. I've had it before where I've had my blood run. I've fainted because I've been sat up waiting for a long time. You know, hospitals are hell for migraines. So I've got to consider, am I going to be comfortable waiting that long? And when you do go in, it's very hard. I know hospitals are under a lot of strain to accommodate those needs because the likelihood when you go in with sort of abdominal pain is you're going to wait longer because especially being quite young when there are other things that are probably going to be more emergent. So it's a lot of, I guess, mental gymnastics or deciding what you're going to do in those situations.

Tihesia, Freja’s Volunteer  34:39
A lot of mental gymnastics when, you know, that's not something that you're seeking help, that should be the only thought is that I need help, I'm going to the place to get help. But what you've described is a trope of that word that you use people saying refusing.

You weren't refusing it. It's something that would have made you feel worse, that trope of being a difficult patient, being a woman, being young, being someone of colour, having, you know, already bad experiences with care. You use the word feeling traumatised all of that and then also the multiple conditions as well, all of that going into you know, it should be just from here to here, but it's actually all of these other thoughts. And you're completely right, I've had that as well where the pain is so bad and I quite often made me reflect myself the times that I've had really, really severe pain and it's not even sort of jumped in my head about going to ED because in my head I'm like, one, maybe it's just my endo and two, I'm going to wait for ages. So it's you know, and what are they going to do? I know that I've had experiences of being dismissed and that's, you're completely right. What if it is appendicitis? What if it's an ovary that's turned around on itself? You know, we quite often forget that other things can happen when you have these conditions. You can get

Tihesia, Freja’s Volunteer  36:17
you know, a cue on chronic of what you're experiencing or other conditions that are quite serious. But we do, because we're so dismissed all the time and there's all of these other things going on, it just stops you from doing that simple A to B that you should be able to do as someone seeking help. I'm really sorry that you've had all of those experiences with healthcare. Emma, what's your sort of thoughts on that? Is that something that resonates with you? Is that something that you've experienced or heard of other people experiencing as well?

Emma    36:40
Yeah.
.
Yeah, so I have had experience with my gynaecologist where I didn't really feel that it was taken seriously. It felt like he was, like the first appointment, he was coming in and out of the
appointment. So he was seeing multiple people at the same time coming in and out. And this was my first ever experience with gynaecology. So I was quite anxious, not really knowing what to expect. And yeah, I was, there was quite a few like jokes.
throughout the appointment, which I was just like, absolutely traumatised because I'm like, I'm really worried about what's going on. And there's some jokes. So that kind of like personal interaction just felt like, to him, it was a normal every day. I see all this sort of thing all the time, but I was like, oh my gosh. And the first thing that he actually did say to me is like, you have a tumor. He didn't actually say fibroid. So as soon as I heard the word tumour and he said, I'm 99% sure it's not cancer, I think my whole everything just began to shut down. As soon as you say tumor,
that really, you know, I was in that fight or flight and I was, you know, I couldn't even really process what he was saying after that, even though he did say, yes, it's 99, I'm 99% sure. I thought, well, you're not 100%. So you are saying to me, I may have cancer. But in that time, you know, the language is so important that you use with people who are already in a vulnerable position. And I don't know if, I'm not sure at what point if he said fibroids, but I just remember the first thing was,
it's a tumour, you know. And it was also you going in for surgery straight away. That's the first thing he said, I'm putting you in for surgery. And there wasn't really a conversation about any of the options or, you know, is this something you want to do? And at that point, I had had a surgery a year ago and I was just starting to get my health back. So I was like, oh my gosh, I'm just starting to work again. I'm starting to get my life back and you're telling me I've got to have surgery. And I was like,
completely overwhelmed and yeah, just, it was not a good experience at all. So, and then following some other, I think I maybe had one other appointment, I was really like, I felt very uncomfortable to see this consultant again, but I was like, no, I need to get the help.
And there was some kind of weird things said to me around, like, are you having children? And my partner was in the room because I, you know, wanted him to come here. And there was kind of like some joking, like to my partner of like, oh, why not having children? Do it for England. And I was like,

Emma    40:15
So that was really what I want to hear. There was just so many curve balls coming and so many like, what is going on? I like, you know, I just felt like, can I really trust this person who is making these derogatory coents, who is making these jokes about

Emma    40:35
Oh, just have a baby. You know, why? Why not? Like, are you seriously speaking? You know, like, it was just too much. There was quite a few different things that were said during the very short appointment that I was like, I, you know, I just thought, who is this person? And this is the person who's going to do my surgery and why is he making so many strange jokes? However, my partner was in the room with me as like another perspective. And he said, look, he's got a very strange humor, but when he's talking about your
condition. He says he, I do think he knows what he's talking about because he's, he was actually going into a lot of detail. He was showing me the scan and you know, that sort of thing. So.
Yeah, it was it was it was a challenge to move forward with that particular surgeon. It did go well. They were actually, they are one of like a specialist on what they do, but I think the like human interaction was very difficult for me to kind of process what is this, what's going on here? I'm not expecting these weird sort of jokes and I don't know if he's trying to make it, make me feel comfortable by making like high jokes, but they just didn't, they were not landing. They were really like, oh, okay, let's talk about all my insecurities when I'm, you know, being examined. This is, this is, yeah, it was very...

Tihesia, Freja’s Volunteer  42:03
No.
Yeah.
And that was during the examination.

Emma    42:16
Yes, yeah, before, yeah, yeah, I was like, okay, this is, yeah, so it was, yeah, I definitely had a lot of challenges with that particular, and on the day of the, and that made the surgery that much more difficult where I had to think, okay, do I trust this person and can I move forward? And there was a lot of like back and forth. So I did cancel the first surgery because I was like, actually, I'm not, I wasn't in a mentally in the right place to be able to go through with that. And then it was, rescheduled there, it was cancelled twice. And then finally I did go in for it. So it was a very difficult situation of did this person genuinely care about my feelings? You know, it was just the very much like, let's just break this person down. Okay, we'll just look at the the uterus, this is XYZ, but then what about me as actual person and with feelings and, you know, having that sensitivity. So that's definitely been lacking. However, I have had a very good GP who as soon as I said, I think I have endometriosis, they referred me straight away, didn't question me, you know, went through some questions and said, I'm going to refer you. On the day of surgery, I did have a very good team who, you know, I had a very good nurse who came over and she was talking to me about, you know, some other health issues that I had. And
how can we support you? She was very good at listening and giving me information to make me feel more comfortable. And also what made me feel comfortable as well is actually the assistant surgeon was a black man, which actually I felt like relief when I was like, okay, I feel a little bit better that there's black people on the team while I'm going into this surgery. I just felt a bit, I just felt more safe and more secure thinking, okay, you know, if, you know, we don't know what the values of the person is that we're putting our lives, you know, in their hands. But I did feel actually that helped me to have more trust. And I think the person waking me up, it was also a black nurse. And them sort of things actually really made a difference for how I felt and also the nurse talking to me and making sure that my other needs were met because, you know, as Saff was talking, it's the whole person and going in with this one thing, but we, you know, lots of us, especially with endometriosis, you have lots of other conditions that are also going to impact your wellbeing, your mental wellbeing, your physical wellbeing as well. So, so yeah, there's been some very, very uncomfortable conversations, but there has been some very, like,

Emma    45:36
The people who were good, they made such a difference. They were there, I thought, oh, you listened to me, you explained. And actually the black doctor, he come afterwards and he explained exactly what happened. He said, we found this fibroid, we've removed it. He did a diagram, so it felt I had a lot of information and care. And also the surgeon who I had a more challenging relationship with, he also come and spoke to me afterwards, which I appreciated. And he also explained to me. So I think communication is so important, really. It can make such a difference. Or if you like, you know, Saff was saying about do I go in or do I not? It can, if you've had bad experiences, you maybe won't go in and something's going to be missed or you're going to progressively get worse. And that's, yeah, it can be really serious, you know, so we need to feel safe that our needs are genuinely going to be listened to, we're going to be understood and yeah, it's really so important.

Tihesia, Freja’s Volunteer  46:39
Yeah, I think a big theme that you've spoken about there is trust and distrust. And we know that historically there has been a lot of distrust between, you know, ethnically diverse counities, black and brown people and the healthcare system. And I think it's important for all clinicians to be aware of that. And, you know, it's not necessarily every patient that you see that's black and brown that might, you know, be might have had those experiences, but it's just having it in the back of your head that, you know, maybe the approach that I take with everyone might not be suitable for this patient. Maybe I need to gauge a bit more what they need before making jokes or etc, etc.
And talking back to the Cysters report, they'd said that only 11% of people that were asked felt that healthcare professionals had been culturally sensitive, which was obviously a tiny amount. And I think, you know, there's the cultural aspect of it, but there is just general sensitivity.

Tihesia, Freja’s Volunteer  48:06
as well. With dealing with these things, I think it's very easy. Obviously, as a clinician, you see things on a daily basis and it's your norm, but for that person in front of you, that's not their norm and it's really scary and it's probably something that they've had for years and years. And, you know, they've probably waited for ages to come and sit in that 20 minute appointment with you. And they've got a list of questions and they're really scared and they've had to bring someone with them so that they can feel empowered. And it's just bearing all of that in mind when, you know, that's me reflecting as a clinician, but also, you know, that's the experience that people are saying that they've had. And, you know, I've also, I've taken a list into the GP and I've had someone sat there with me as well. And I remember when I was first accessing care after sort of, you know, having an experience of being dismissed, I did wait a good few years before, you know, having the symptoms and being like, okay, yeah, no, it is actually really painful and it's getting worse. And
I probably should go back to the GP. And I took a list and I apologised because I felt like I was having brain fog on the day. And, you know, it's, you know, you really build yourself up. And that was me as a doctor at that point, going to see another doctor. And I thought to myself, you know, if I'm feeling this way, what is it like for other people?

Tihesia, Freja’s Volunteer  49:27
So yeah, I think, yeah, thank you for sharing that. Thinking a bit more about, I guess, the things that I think we've all spoke about, you know, those moments of enlightenment or like realising that, you know, it's good to have someone who's
endometriosis, a specialist or things like that.
What do you feel the knowledge gaps have been for you and what have you done to fill those knowledge gaps? And looking back in hindsight, I guess for people that are listening that are looking forward, what do you think is helpful for filling those moving forward? I'll start with you, Emma.

Emma    50:20
I think the support groups really was really good for my knowledge and, you know, that balance of the actual, the doctors speaking and actually the lived experience.
And I think, you know, talking about that specialism, having the different...
consultants coming in and discussing actually you, you know, the level of difference between a really experienced one and an inexperienced one. That's something I had no idea about. I really didn't think about, you know, how many surgeries have they done? What's their specialism?
And that definitely, that made me think slightly differently. So yes, I had the personal issues, but actually I looked at the consultant. You can have a look on Google and you can see your gynaecologist and you can see how many years experience they have. And you can also see
you know, testimonials and all that additional training. So I think, yeah, actually Googling the people that you're seeing. And if you're not happy, you can get a second opinion, which is what I learned in the support group, having a second opinion. And also if you're if you feel as if you're being dismissed, going to PALS. So that can be a way of really pushing your voice forwards. And it generally, from what I've heard, if you're being dismissed for a long time, that's where things start to move a lot quicker.
So yeah, so in my immediate life, I didn't really have many people who had fibroids or endometriosis. And for me, it was really, you know, looking online and being very discerning with online because there's a lot of nonsense out there and people promising you a  cure, or you take this tea for three months and your fibroids are going to shrink, which I did go down a bit of that rabbit hole of can I find natural alternatives? I think there is some, you know, some aspects that can work.
but you have to look at how severe your situation is. And yeah, I think you have to try and find that balance between what people have said and also what is the medical advice as well. So yeah.
Yeah, and I think also using like the proper website, so like endometriosis, is it endometriosis UK? And yeah, yeah, be careful that you're not being sold. Hope.
where you're going to delay treatment for a very, very severe condition because it really can cause a lot of issues, which I've definitely heard of people wanting to go down a natural route and things have not gone well for them because
their situation was so severe and they've left it for a very long time.

Tihesia, Freja’s Volunteer  53:45
Yeah, I think that's really important. Yeah, I think there is a lot of information out there and online is a space where people can make money, right? So a lot of, yeah, I come across a lot of things as well. And it's about making sure that there's evidence behind things and being very individual. Like we've said before, you are, everyone is the expert of their own condition and maybe, you know, some sort of magical tears works for them, but that doesn't necessarily mean that it will work for you. It's really important. What about you, Saff? Have you got any other bits to add on to that?

Saff   54:31
Yeah, I think in terms of the online, you do have to be careful. I think support groups are helpful, but it depends on the purpose of them. Sometimes consuming a lot of content where, you know, people in various severe situations can be really hard to constantly read all of the time. So you have to make sure you sort of separate yourself a bit from that because you can easily just be sucked in reading all these pages all the time. But there are some that are really, really helpful on Facebook. There's Ender Revisited. It's really, really good. There's a lot of knowledgeable information in there. They upload some latest research and stuff like that. So it is really helpful in terms of learning about like comorbid conditions with endometriosis. You know, it was helpful to know that, to know, you know, lists of where to find surgeons that are accredited in your area, the hospitals that are accredited for endometriosis. So it becomes a little bit easier because if you just type it straight into Google, it can be quite overwhelming. Through those groups, you know, I learned stuff like the NICE guidelines. I had no idea what that was. Learning about that sort of pathway meant, you know, my symptoms kept persisting. I've done all these investigations. I've tried many different treatments and my symptoms are still here. So that means, okay, even if your scan is clear, only for me in this case, shown us some spots of superficial endometriosis. That doesn't mean you can't be listed for surgery if it's still impacting your daily life.

That's how I learned that, you know, some hospitals offered gas and air for coil removal. Okay, so I know this is offered in the UK. I can confidently ask for it because it does exist. There's some written evidence. So I at least have something when I go into the, when I went into that doctor's office being like, look this is it. Do you offer it here? And then if they didn't, like, there's the opportunity, well, are there any other hospitals in the area that offer it? There's a really good book by Jen Moore. She's an endometriosis advocate. She's done lots of lots of work and her book came out last year, I think and it's a really accessible tool for learning about endometriosis and how to talk to doctors about it. There's a whole list of questions on what you can ask them before sort of agreeing to a surgery and that takes a step out of the work you have to put in because it's an accessible guide there. I found it really, it's something I wish I had when I started my journey, but I'm glad it exists out there now and it's a guide I can refer back to because ultimately going to those situations is always going to feel nerve-wracking. I'm probably going to forget questions or it might prompt you to ask certain things.

Those things are really helpful. And really just in terms of the sort of the medical side and the sort of the holistic side, not everything is going to work for you. Don't feel like you have to try every single thing at once, you know, take things at a time. You can do both, you can seek the medical help, you can try the hormonal therapy, you can have surgery, but you can also try anti-inflammatory diet changes, for example. When it comes to supplements, make sure you do your own research around them, make sure the places that you're buying from, you know, are properly vetted, have got all the right accreditations and are safe to take. Ask your GP first because you might be on other medications that, you know, you might not need to take that, whether you might be careful with dosing, all those sort of things. Because I recently there's specifically a supplement for endometriosis called NAC, which has come out. There's a small study on it. And, you know, there's lots of people who went, oh, it's really, really great. You should take it. But again, having done my own research, you know, for a lot of people, they didn't tolerate that dose. There's lots of other side effects that need to be mentioned. And things, so you should probably be taking that under the guidance of somebody who can monitor your symptoms and make sure you're okay.

Tihesia, Freja’s Volunteer  59:01
Yeah, no, really valuable stuff. I think the NICE guidelines, very, very important, something that I always mention to my patients as well. And yeah, I think there is a lot of information out there and it can be really, really overwhelming.
I also had a similar journey with someone like online counity being really supportive and helpful. There's someone called Dr. Jodi Hughes. They do research on endometriosis. And she also has endo herself as well. And yeah, I think that was really helpful for my journey. We're talking about at the very beginning of my journey, I didn't realise that endometriosis can be missed and that, you know, superficial is often missed in surgeries.
And I think for people really early on in their journey, a knowledge gap that I had was that, you know, if your scan is normal, it doesn't necessarily mean that there's no endometriosis. And it's something that I quite often see patients come in with.

And, you know, they've been told that their scan's normal and that's no endo and you're okay. And obviously the symptoms are still there and it's just not on the scan. So yeah, some really important learning points there. The last question, I wanted to sort of change the phrasing of it a little bit.
but still along the same lines. So I think we've uncovered a lot of sort of general themes that we experience as people navigating menstrual health conditions and conditions that can affect our reproductive health.
And obviously the statistics as I've listed throughout are telling us that black and brown people have a delay in diagnosis. I think it's about a year and eight months difference between the general statistic, the average in the UK for diagnosis of endo and those for ethnically diverse communities. I think statistics are powerful, but they quite often you know, it doesn't reflect always everyone's individual experiences. So I wanted to ask you both to sort of summarise or to sort of list what you think is most important for people, whether that's healthcare professionals or patients themselves.
to bear in mind and to, you know, keeping the forefront of their minds when either navigating a journey or coming across people that are black and brown and are experiencing issues related to their menstrual reproductive health.
Oh, let whoever wants to start, start. Sorry. Got A long-winded question. Let me know if you want me to rephrase.

Saff   1:02:06
No.
I...
I guess it's the mental health aspect of it. Mental health is already a challenging subject to talk about in black and brown counities anyway, but when you're likely to experience delay and dismissal, having mental health support along the way, from the very beginning, I think,
would have been, I feel personally, beneficial because then at least you're being looked after along the journey and you're not having to deal with it all yourself. Or, you know, sometimes you might feel like you can talk to a friend or a partner, but you might not be able to talk about everything because of their burdening others, like that's a big coon theme in South Asian communities. People don't want to feel like a burden and that whole sort of like toughing it out. So if you can have someone that's external from the situation where you can talk about what's happening, that makes a big difference, you know, for me finding a therapist that was also a person of colour made the biggest difference. Like I've had white therapists in the past or I've had talking therapy over the phone, but having virtual therapy with someone that was from a similar background to me, they didn't have any chronic health conditions, but they've worked with patients that do have it. She really helped me get to a place where I was able to advocate for myself confidently in consultations. Like I still took my partner because generally I feel more comfortable to have someone with me. But I got to a point where I used to be in tears just trying to talk about my symptoms.
to end of last year, which was a very challenging time for me mentally. I still had, I went to see the endometriosis specialist had a review and I was able to talk calmly and confidently. I left not feeling upset. I left not feeling trained, even if there were things that, coents I didn't necessarily agree with.
It didn't.
ruin my whole day, which something like that would. And it's just, I guess the services might not necessarily be there, but you can be referred for mental health support being, or at least making patients aware of that. You know, if I wish there were sort of,
or at least in doctor surgeries, you know, you never see a pamphlet about endometriosis, you know, having something like that, or even if they're aware of local groups that do that offer like support for menstrual health conditions, be like, look, there are these things going on, you can meet people that are like you, you know, I know endometriosis UK do some virtual ones, you know, those are things, especially if there's a doctor that has women's health and mental health interests, they should know about that and they can, this is where you can get the information from. Having those sort of resources pointed out early on makes
would at least make what feels like a very lonely condition less lonely.

Tihesia, Freja’s Volunteer  1:05:17
Yeah, and I think that's a big thing as well, the loneliness of the condition that really was, I think, especially when it starts to progress and impact every part of your life. That's a big thing. So having that support there is really, really important. Do you have anything to add on to that, Emma?

Emma    1:05:39
Yeah, I mean, I would just agree with Saff about the mental health aspect. Yeah, it really impacts your mental health and get help with your mental health as well. Because, you know, these two things can deteriorate and you want to make sure your mental health is good.
as best as possible. So you can actually cope with the physical challenges as well. And also just to mention like, yes, the like reproductive health, but it's the impact on your whole life. So, you know, when my symptoms were the most severe, walking was very difficult. I could only walk for, you know, 15 minutes.
going upstairs, was out of breath. Working has been quite a challenge. So I've only been able to work part time for the last several years because of the fatigue and also that thing around, you know, loneliness. So it could be just friendships as well.
like you're not really able to get out and about and be in counity with people. So your life just really just shrinks so much and you can get very isolated because you can't participate because you're not well enough. So I think
You know, when we have these conditions, people will see us when we're well, when we're out and we look normal, we look okay. But actually when we go home, it can be a completely different story where we're in bed most of the time, we're on our own most of the time, we are really struggling, but we don't usually show that side.
So, yeah, just knowing that it's not necessarily a mask, but we're showing the best part of ourselves, you know, and you're seeing us on a well day or a well moment doesn't mean that when we go home, actually, there's a lot going on and we're trying to juggle, you know, finances, work, how everything going on, which it does impact your whole life a lot. So yeah.

Tihesia, Freja’s Volunteer  1:07:41
Yeah.
I think it's that holistic approach, not just from healthcare, but from ourselves to ourselves as well. Yeah, and making time for yourself. I definitely know Emma, I've attended Emma's sessions. The mindfulness and yoga sessions and that's always a really good grounding point for me. I always feel a weight lifted after your sessions and that does always, I have a bad habit of it only coming when I'm at, you know, crisis point. I need to be better at maintenance.

Emma    1:08:26
Yeah, we need to, we need to keep it up. Yeah. And I think we have to be even more coitted to our self-care and our rest and to keep pushing through. When you're not well, I think you can really impacts your symptoms. So we have to say, actually, we need extra care, we need extra rest, and we can't keep up with this normal lifestyle that people who are well can maintain. And it's a very difficult balance because there is a lot of grief that but if we don't honour where we are now, we could really impact the future because if we push too hard and our body, because our body's saying no, that's really what all these symptoms are saying. There's something not right and your body needs something else to what it's, you know, getting, whether it's, it could be that you're in a very stressful work environment. I've spoken to people whose symptoms have significantly increased because of the work environment. They changed jobs and they're now able to, you know, they're walking much better because they were in such a toxic environment. So I think, yes, we need to look at the medical side, but we do need to look at our whole life. And are you in situations that is making you chronically stressed, inflamed, feeling unsafe, because all these things, they're going to have a massive impact on your conditions.

They're not the only factor, but we also need to, you know, make sure that we're in a safe space. We have people who support us, because if you have people who are telling you you're overreacting or there's nothing wrong with you, this is quite damaging. So be very protective of your space and know that you don't have to share things with people, you know, only trusted people. And when you're ready, you know, you might not be ready to share it. You know, I've had the condition for several years and sort of feel more comfortable talking about it, but find the people you feel actually, you know, that thing around trust again, find them trusting people.

Tihesia, Freja’s Volunteer  1:10:48
No.
Yeah, it's really, really important.
Definitely very important. And I think for our closing, I think we have sort of touched on it, but just thinking about any final bits of advice for anyone along any point of their journey. I know you've both given a good couple of examples there. So I'll start off with one. For me, it's been sort of similar to what we've spoken about, but when you need more help thinking about the things that are there for people living with disabilities. So Um, I've recently uh got myself a radar key. I've got myself a radar key and I went to an event yesterday. I was having a really bad flare and it was the first time that I've sort of been like I really struggled to stand for a long time and was in a seated area. And you can get lanyards and things like that that will help to communicate your needs because it's not always easy. And it's that whole thing of like prioritising yourself and that thing of asking for help. Sometimes that can feel really, really difficult. So having those things in place already so that you don't have to explain or fight as much. Yeah, those have been really helpful for me. So yeah, I think that thought around that transition and yeah, that's been a transition for me looking at things like walking aids for when I feel like my mobility is limited. That's not anything I've had to look at before. So going with the time and like Emma said, where you are at the moment so that you're not putting yourself through unnecessary harm. That would be my bit of advice and guidance.

Tihesia, Freja’s Volunteer  1:12:57
Saff, do you want to go ahead? If you've got anything to add, it's okay if not.

Saff   1:13:02
Sort of in a similar threads to that.
You know, you mentioned the mobility aids. Being someone who is young, it can be hard to be like, okay, do I need this? I feel like I need this. And chances are if you're thinking, you're feeling like you're needing it, you probably do need it. And if that walking stick, or like for me last year, I really couldn't use my life, like walking stick wasn't enough. Getting a rollator meant I could go outside. That's really good for your mental health. That's going to keep your body moving. If it's going to allow you to do something that is enjoyable, then it is a beneficial thing for you to use. And you know, for me, getting involved in the disability counity and making friends with them that takes away the loneliness and that might necessarily be just people who have endometriosis, people with other conditions, you can learn a lot on terms of how pacing, how to manage fatigue, all of these other things you can learn from other people.

It's a place you can really sort of talk about things openly in a different way with someone who just really does get it because they have that same lived experience. And again, it takes away the loneliness from these conditions and it can be hard to
put yourself out there, but you don't necessarily have to start posting on Instagram, whatever, but there are like community groups where you can just talk to other people, which does make a really big difference. And sort of the last thing is I didn't necessarily realise it until sort of reflecting on it, but at least seeing or following doctors and GPs within the UK that talk about these issues, but are also people of colour, because it makes a really big difference seeing people from your background talk about the conditions that you might be experiencing, how to one talk talk about these things in the GP surgery, you know, I want to say it was Cysters last year that there was a few doctors who did a little campaign where they spoke about these conditions in the native languages to the different sort of cultural counities we have in the UK. That makes a really big difference, you know, being able to share with my mum that there's, you know, women that look like her talking about menopause and stuff like that. You know, it makes a really big difference to regularly see people like you talking about these things. It's very good for the brain because it can, again, take away the fact that, oh, it's just me feeling like this. We'll know there are experts within your community talking about it as well.

Tihesia, Freja’s Volunteer  1:15:50
Yeah.
Really important points. Emma, have you got anything to add?

Emma    1:15:53
Yeah, so I would just add about physical movement and taking care of your mind. So as a yoga and meditation teacher, I just want to say that finding something that is supportive to your body and your mind is really important. And again,
tailoring it to your needs. So yes, there may be things about stay moving, have exercise when you're on your period. However, if you're already, you know, you've got chronic inflaation, really finding things that are very nurturing, very gentle and not pushing your body. So I do see people who
you know, they want to keep doing really strong workouts and this is going to help me and I'm going to do a really extreme diet. However, you're putting your body and your mind under additional stress. For people who are well, that stress can be good. But if you're chronically stressed, you need something that is
very calming. So please find something that you feel the person is, again, has that empathy for your condition. They can tailor to your needs and really, you know, and also with the mindfulness and the meditation, that can really help the mental health aspect because we're holding so much in our minds, we're figuring so many things out, so much stress. So in addition to all the things that we've talked about, finding ways that you can feel, you know, and even if it's not meditation, maybe it's creativity, you like to draw, you like to knit, anything that's going to bring you into that flow state, find these things because they're going to help you just to feel a little better, you know, or a lot better depending on what you're doing. So yeah, just take care of yourself the best you can.

Tihesia, Freja’s Volunteer  1:17:56
Yeah, no, self-care is definitely very, very important, especially when living with a condition. Thank you both so much for your valuable insights and sharing your experiences today. I feel like we've covered so much and really thought about lots of different aspects of health and wellness that can affect us on a day-to-day basis, you know, taking into account all of those things to do with not just being a woman, but also being black and brown people.
I really, really appreciate you coming and joining the conversation.