The Sunflower Conversations

Endometriosis with Gemma and Aimee

March 13, 2022 Hidden Disabilities Sunflower
The Sunflower Conversations
Endometriosis with Gemma and Aimee
Show Notes Transcript

Endometriosis with Gemma Beswick and Aimee Gill

Endometriosis can affect anyone assigned female at birth, including women, trans men, non-binary and intersex individuals.

Gemma is a Volunteer Leader for the charity Endometriosis UK. Because of her lived experience of endometriosis she is passionate about supporting people who are waiting for a diagnosis and joins us to answer our questions.

Aimee is a Sunflower wearer, who is now 18 years old but first started experiencing symptoms when she was 11, at 14 she received her diagnosis. Aimee has had numerous surgical and drug treatments. 

In the conversation they explain the physical effects of endometriosis and the emotional trauma they experienced at not being believed, having to fight for the correct diagnosis and friends falling away.

If you are experiencing problems discussed in this podcast contact your GP or healthcare practitioner.

For support

Check out Aimee’s Instagram account 

Check out the Fife Group Endometriosis Facebook page

Invisible Disabilities Index

 

Hosted by Chantal Boyle, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

 

 

 

 

Chantal Boyle:

Good morning, welcome to the Sunflower Conversations. I'm Chantal. And I'm really looking forward to my conversation today. Joining me is Gemma, who is a volunteer leader for the charity, Endometriosis UK. And Gemma runs the Fife Group. She has lived experience of endometriosis and is passionate about supporting people who are waiting for a diagnosis. Also, joining us is Aimee. Aimee is a Sunflower wearer, 18 years old, and first started experiencing symptoms when she was 11 years old. At 14, she received her diagnosis. Aimee has had numerous surgical procedures and drug treatments. So let's restart off by saying that endometriosis affects women, LGBT women and non-binary people. Gemma, can you please, first of all, explain to me what is endometriosis and how does it affect a person?

Gemma:

Okay. So endometriosis is a condition that affects one in 10 women. It's where cells, similar to ones in the lining of the womb, are found elsewhere in the body. Each month the cells react in the same way to those in the womb, building up and breaking down and bleeding. But unlike the cells in the womb, that leave the body as a period, the blood has nowhere to escape. Around 1.5 million women suffer from the condition and it can cause chronic pain, fatigue, depression, isolation, impact on sexual intercourse and difficult conceiving. It's a really difficult disease or condition to deal with, because there is no cure. And so a lot of it's down to pain killers and various injections you can get. Yeah. Some women believe that hysterectomy works. It works for some people. It doesn't work for others. Everybody's different, obviously, we all react to it differently. Well, there's four different stages. But somebody with stage one could be in a lot more pain than somebody in stage four. So it's just managing all that, the way that your body reacts to the condition.

Chantal Boyle:

One of my questions was going to be, because it's affecting nerves.

Gemma:

Mm-hmm (affirmative).

Chantal Boyle:

Nerve tissue. Right? And that can be potentially anywhere in the body?

Gemma:

Anywhere. Yeah. Yep.

Chantal Boyle:

So one of my questions was, is it only women that would be affected by this? But you say it is kind of... It is linked in with the monthly cycle?

Gemma:

It is. Yeah. Linked in with your menstrual cycle. Yeah. But I believe... I was reading over the weekend, I believe it's really, really rare, but it's been found in some men now.

Chantal Boyle:

That's interesting.

Gemma:

Yeah. It is, yeah. But I don't know the details. I was just reading about it over the weekend. I'm constantly researching it.

Chantal Boyle:

Yeah.

Gemma:

So yeah, I guess it's something that's ongoing that they're constantly researching.

Chantal Boyle:

It sounds like a very perplexing disease.

Gemma:

Yes.

Chantal Boyle:

And so the four stages, so there are four stages. So you mentioned that somebody on stage one might not be... Have a totally different experience than stage four. So is it possible to explain the four type stages or not?

Gemma:

It's quite difficult, I think because... Well, myself, I've got stage two, but I could be in a lot more pain than somebody with stage four. You have women with stage four, they don't even know they've got it. And some women don't realize they've got it until maybe they've had children, and then they start experiencing severe pain, and it can turn out as stage four. All your kind of organs are stuck together. So it's really difficult to explain. Stage one, I think, it's minimal. It could be, perhaps, maybe the size of your pinky nail. But again, you could be in excruciating pain. Stage two is mild. Stage three is moderate, and stage four is severe, but like I say, stage four, you might not have any symptoms. You might never know you've even got it. It's just how your body reacts to all these different things.

Chantal Boyle:

So Aimee, can I bring you in here? Can you tell us a little bit about yourself, Aimee?

Aimee:

So I was diagnosed when I was 14, but I had symptoms since I was 11. I first went to my GP about it. I was just put on the pill, because they said, just have your periods, this will sort it out. Then I was tried on things like Mefenamic acid and Tranexamic acid and things to try manage the pain and the bleeding. The bleeding was really heavy and I would get a period. I'd get symptoms the week before my period, the week of my period, and then the week after. So it was three weeks of the month. I was just completely out of it from the pain.

My GP told me that it was IBS, because of the bowel symptoms I was experiencing. I was told... I had blood tests for my thyroid levels, told to cut loads of different foods out of my diet to check for intolerances. So they really kind of focused on the bowel issues that came along with it, rather than actually these bowel issues are worse on the week of my period. So I ended up doing my own research and I found out about endometriosis online. So I mentioned it to my GP, who just said, no, you're too young for that. It's not that condition. You're too young. So it wasn't until I was 13 that I was finally referred to a paediatrician because of my age. And that was only because we ended up putting in a formal complaint, because we weren't getting anywhere. And then as soon as I saw the paediatrician, her response was, why have you not been referred to a gynaecologist?

And she referred me to a gynaecologist straight away, saw the gynaecologist, who said, yeah, we'll book you in for a laparoscopy straight away. I had my laparoscopy when I was 14. They found endo on my left pelvic side wall, and my left ovary, and my pouch of Douglas. But this was just a general gynaecologist, not an endometriosis specialist. So the endometriosis wasn't removed from my pouch of Douglas, but it was removed from my ovary and pelvic side wall. Had some relief for about year or two. And then over time since, it started building back up again. I tried to get referred back to gynaecologist at my hospital, but the wait times were really long. It was just a case of kind of trying to manage it with my GP, until about a year ago, I saw a... We paid to see somebody privately, an endometriosis specialist, and I've just had another laparoscopy in January. They found endometriosis on my bowels on my... The stuff from the pouch of Douglas was still there. I had a four centimetre cyst on my right ovary, left pelvic side wall, again, had it.

Chantal Boyle:

Is it laparoscopy? Is that how I say it? What are they... They're removing the tissue that's got the nerve damage or do you know what?

Aimee:

Yes, though, if they find patches of endometriosis or adhesions that are kind of fusing organs together and things like that, there's two types of surgery, there's ablation and excision surgery. So with ablation, they kind of... I kind of use the analogy of weeds. They're kind of just burning the top off, but the roots are still there. Whereas with excision, they cut it out from the roots. So although the endometriosis tissue can still grow back, it kind of takes less time to grow back, because of that. So I had excision surgery.

Chantal Boyle:

Right. And then is that what's created the scar tissue?

Aimee:

Yeah.

Chantal Boyle:

Yeah. And that's another problem, isn't it? Scar tissue.

Aimee:

Yeah.

Chantal Boyle:

And Gemma, what about you? Was your diagnosis a similar story to Aimee's, whereby she's had to go and research and really push and fight to get the treatment and the quality of service that she needed?

Gemma:

Yes. So I'm 41 now. And I started the fight when I was 15 back and forth to doctors. Eventually I was... I saw a gyne. The gyne said that it was in my head, because I lost my mom at a young age. So my mum died of ovarian cancer. So they've always kind of put it down to me just being a worrier and me thinking, because my mum passed away of ovarian cancer, I was thinking it was all in my head, but I knew it wasn't in my head. So I fought and fought, and I was put on anti depressants, I was made to see psychologists, just kind of made to feel like I was losing the plot a bit.

And then eventually I agreed to do a drug trial. So I was put on Gabapentin. And you were basically working you up to taking 12 Gabapentin tablets a day. And the trial was going really, really well until I had the 12th tablet, and maybe a week or two after that, I just started collapsing. I would just be out and I would just faint. So got in touch with the hospital, was brought off them immediately. They didn't even wean me off them, they just brought me off them, referred me straight for a laparoscopy. And that was my first laparoscopy and it came back that I had endometriosis.

Chantal Boyle:

And how old were you, sorry, at that point?

Gemma:

I was 36.

Chantal Boyle:

Wow. That's a long time from the age of 15, isn't it?

Gemma:

Yep.

Chantal Boyle:

And all that trauma that, it was keeping [crosstalk 00:10:30]

Gemma:

Well, even at that point, they still... They just diagnosed me. They never did anything. So they left it, and I went on a chemical menopause injection called Decapeptyl, but I can't take HRT, because breast cancer and ovarian cancer are in my family. So I had to come off that, because it's not good for your bones and your heart. So again, I pushed for another laparoscopy so I could get excision and ablation. And I got that two years ago and my symptoms are now coming back thick and fast.

Chantal Boyle:

Really?

Gemma:

I'm actually seeing my consultant this Friday, and I'll be asking for another laparoscopy, and more excision and ablation. I think it's just a constant battle that you have, but with that, obviously, comes its own problems. Because then you end up with scar tissue and then organs start sticking together. So it's just a vicious circle and not knowing what to do, really.

Speaker 4:

You are listening to the sunflower conversations with Chantal. To share your story and find out more information, details are in the show notes.

Chantal Boyle:

It's really aggressive, isn't it?

Gemma:

Oh yeah.

Chantal Boyle:

Really aggressive. And your mental health must have been severely affected by your treatment from the age of 15, such a formative time anyway. You said that you lost your mother. I'm really sorry to hear that. And then to not be believed, and sounds like Aimee had a similar experience. How do you cope with that? How do you?

Gemma:

Well see, but when I was diagnosed, that was probably one of the best days of my life. Because you were finally believed. They actually... You eventually can prove to them that you were never making all this up. It was real. And to go through that for 20 odd years plus, it was really difficult, but I would say my mental health is... I'm fine now. I don't take any tablets or anything. Don't do anything like that. And because I've got the group and we've got loads of support through Endometriosis UK, it makes a massive of difference.

And speaking to other women that have got the exact same condition is brilliant. Because they're the only ones that really know what you're going through. Friends and family, they kind of struggle, I think, because they don't understand the condition and the way you feel, because obviously you look fine and there's nothing visible to see, but on the inside you're not fine. And yeah, I think having these support groups makes a massive difference to your mental health. Definitely mine anyways, it's made a huge difference. And I've made and brilliant friends through these support groups. I don't know about yourself, Aimee, if you're on any of these support groups?

Aimee:

I'm not with any of the Endo UK support groups. There isn't one very local to me, but I find I have my Instagram account, which I use a lot to raise awareness and support other people, get support for myself. And, like you said, being able to talk to other people who are going through the same thing and they do just get it, even little things like your family will see you in pain and say, you need to go to A&E when actually, for them, yeah, that would be the correct answer, but actually, for us, it's a real big, last resort because we know there's not a whole lot A&E can often do, other than give you stronger pain meds. And sometimes you just prefer to ride it out at home, and the endo community really get that, because they've been through it. And it's a hard thing for other people to understand, friends and family can do that absolute best to research and understand. But I don't think you fully can, unless you go through it yourself,

Chantal Boyle:

You've mentioned it is related to the menstrual cycle. So as a young person, being at school, because we don't really talk about periods anywhere near as much as we need to, it's some sort of dirty secret that you can't refer to, which is absolutely wrong. How was that for you? Because you were starting this change in your body, and being in a school environment, how did you deal with that?

Aimee:

Yeah. I found that really difficult. Initially my symptoms started off as kind of just the week I was on my period. So I managed that okay, when they first started. But when I got to about 13, that was when they started happening a lot. I missed a lot of time out of school, because of, not only the endo, the pain, the sickness, the bowel issues, but also the effect it was having on my mental health, not being listened to and believed. And like Gemma said, it was such a massive relief when I got diagnosed, that I actually cried. And I was, wow, somebody has found a reason for this. Because you start to think, when you're being dismissed so much, you start to think, oh, is it in my head? You start to question yourself, but I lost a lot of friends at school because of it. If I kind of spoke about it was like, oh, why are you talking about your periods again? Why are you talking about being ill again? It's all you talk about. And I just wanted to be able to confide in my friends.

Chantal Boyle:

Yeah.

Aimee:

And get some support. That's what friends are meant to be for. But I think because of... It was partly the type of people they were, but also because it was based around periods and things. It was one of them things they just didn't want to talk about. I was the first one in my class. I got my period when I was in year six, when I was 10, and I was the first one in my class to actually get it. So I had, at that time, everybody... It was a big, exciting thing for them. They were like, this girl's got hers, asking me loads of questions about what it's like. But as soon as I got to secondary school, people weren't interested anymore. It was, like I said, why are you talking about this again? They didn't care. I was off school for three weeks at one time, and I didn't get a single message from any of those people I called my friends.

Chantal Boyle:

That's going to have a massive impact, isn't it? On your.

Aimee:

Yeah.

Chantal Boyle:

Confidence, your mental health.

Aimee:

Yeah.

Chantal Boyle:

I think there is a massive shift from when you go from primary school to secondary school. You're still in that kind of little child head space, aren't you?

Aimee:

Yeah, definitely. I think it's one of them things where everybody's just so interested in trying to fit in, and it definitely impacted my mental health, and I felt so alone in what I was going through. In fact, the only people I was seeing, because I didn't have any good pain relief or anything at that time, I was stuck in bed, so the only people I was seeing was my parents, day in, day out. And I love them, but it gets lonely when you can't see anybody else. And then when you've got these people you call your friends, who then aren't even contacting you, you start to feel really alone and kind of left out. I feel like I've missed out on my childhood and my teenage years, because of how bad things have got in the last year as well. So yeah, it hugely impacts your mental health.

Speaker 4:

You are listening to the Sunflower Conversations with Chantal. To share your story details are in the show notes.

Chantal Boyle:

As you said, having gone through everything that you've both gone through, getting your diagnosis is the validation for... Yes, I'm genuine. This is how I was feeling. Because, as you said, you start to question yourself. So are you still in education or have you left education?

Aimee:

I was studying a level two course this year, but because of how bad my endos got, I've had to drop out. The college weren't hugely supportive. So I've had to drop out this year to kind of take time to focus on getting myself better. My surgery didn't really help, so I'm going to be starting menopause injections. So that's going to be difficult as well. It comes with its own side effects and everything. So.

Chantal Boyle:

Yes.

Aimee:

I'm just taking time out to focus on myself, and then kind of reevaluate the situation in September and hopefully go back.

Chantal Boyle:

Gemma, your length of time before you got a diagnosis was very much longer, but I'm sort of having a feeling here that if Aimee hadn't been able to sort of maybe go down the private route, she potentially would have had a similar experience. What is the length of time for diagnosis, Gemma, from people that you've spoken to, and also does it matter where you live? You know, sometimes things to do with healthcare are a postcode lottery.

Gemma:

Well, I know in Fife at the moment, we are eight and a half years diagnosis time, but I think it has it's own average, about eight years, eight and a half years, throughout the whole UK for diagnosis. Some maybe a bit longer, like you said, it's a postcode lottery. It depends where you live. At the moment, where I live, we've not even got any GPs. Our GPs have all resigned.

Chantal Boyle:

Oh my gosh.

Gemma:

Yeah. And we've girls in the group that are paying to go private, now. I've got... One girl is actually traveling. She's gone to Turkey to get a hysterectomy because she just can't get any treatment here, which is really quite scary to think the lengths people are going to, just to get some relief from this condition.

Chantal Boyle:

It shows you how extreme the pain is, doesn't it?

Gemma:

Yeah.

Chantal Boyle:

How impactful it is on the body and mental health and relationships. So Aimee, the people on your Instagram page, they're presumably from different areas in the UK, or are they from abroad? Who do you get interacting with you on that?

Aimee:

I've got people from all over the world. It's primarily UK, but I've also got people from America, Australia, I've got some French followers. So it is quite all over the world. And I definitely agree with the kind of postcode lottery. There's not that many endometriosis specialists compared to the amount of people with endo. So it's really difficult. A lot of people do end up traveling. I travelled from Somerset to Essex to get my surgery, because that was a specialist that had been recommended to me by another lady. And it was meant... I felt comfortable with them and I knew that they were a good specialist, who was going to listen to me. So, to me, it was worth it to travel.

But I do know other people who, obviously, my friend who lives in Essex got to see the same person, NHS, straight away, because that was just her local specialist. So definitely depends where you live, I've noticed. Often it's people that live in the cities, it's very slightly quicker, because that tends to be where the specialists are based, but not hugely. It's pretty similar everywhere, in terms of... It's just a long time to get a diagnosis. And that's the same from people I speak to in America, Australia all over. It's all pretty similar.

Chantal Boyle:

Right. That's interesting. Again, I guess it's women's health. Maybe it's not given the priority that it needs.

Aimee:

Yeah.

Chantal Boyle:

I think Gemma, you said a stat of 1.5 million in the UK?

Gemma:

Yeah. 1.5. Yeah.

Chantal Boyle:

So do you know…?

Gemma:

That they know of.

Chantal Boyle:

That they know of. Yeah.

Gemma:

That's it. There'll be women that they don't know of yet that are still having that same fight that we've had.

Chantal Boyle:

Through Endometriosis UK, are you aware of research that's being done? And do you think that there's enough funding in this area? You said that you haven't got any GPs. So I would imagine that funding is a huge issue.

Gemma:

A massive issue. Yeah. I know there's a clinic in Edinburgh, that specializes in endometriosis, and there they're doing a lot of trials. They're doing the Gab Two trial, which is the Gabapentin trial that I was on. They're also doing... God, what's it called, *(EcoTech) trial, which evaluates the potential and accessibility of a smart watch, to see if the technology from a smart watch could possibly help with the pelvic pain. But I'm not sure how the whole trial works. I've not really been following it. I know in England, there's quite a few trials as well.

Chantal Boyle:

Gemma, are you able to maybe touch on some of your own personal experiences or some of the women that you support within your groups, with regard to work and relationships?

Gemma:

Work. I think there's more workplaces are beginning to bring policies in place to support women with endometriosis. I think, because it's spoken about a lot more than it used to be spoken about, I know Endometriosis UK can link up with companies now, and they can support women that are working with a condition. And a lot more businesses are looking at the way you work, and the equipment that you're using, and they try and assist with that. So it definitely is getting better within the workplace. I know the company that I work for, they're amazing with women, with this condition. Any time off that you need, they don't take that out your allowance. I get seen through, I've got BUPA healthcare through my work. So you can just pick up the phone now, or I can pick up the phone now and I can be seen within 24 hours, which is great. And I think a lot more businesses are going down that road.

Chantal Boyle:

So Aimee, why do you wear the Sunflower?

Aimee:

So I wear the... I initially got it when I was going on holiday to America through a Gatwick Airport. And that was kind of... Really helped to get me through security and for all the staff to understand that there was something else going on, I would be carrying medical supplies, all of that. And it really just made the whole journey so much easier and less stressful on me. I also have autism, so that definitely made a massive difference. I have days where my pain is severe and I just need to crouch down for a minute, and kind of let the kind of intense pain ride out. And it just means that shop staff who can recognize it, are able to say, oh, see if I need somewhere to sit down or anything. And it just makes you feel more comfortable going out, knowing that there's people there that are going to understand that you've got something going on that they can't see.

Chantal Boyle:

And what would you say to somebody who might be considering whether to wear it or not, they're not sure, is it going to help me or is it going to make me a target or?

Aimee:

Yeah, I'd say go for it. I was very concerned at first, with my anxieties and confidence issues that it would kind of draw attention to me. But actually over the years, I've realized that the only people that notice it are the people that are trained to, and the people you want to notice it, actually other people don't particularly. And it just really does put your mind at ease. So I'd say, go for it, give it a try and see if it works for you.

Chantal Boyle:

Aimee you've mentioned some of the treatments you've had so far. And I just wondered if you could just talk a little bit further about that. You mentioned that you are going to be taking some medication now that's going to put you into early menopause.

Aimee:

Yeah. So obviously, as I said earlier, I was initially put on the pill when it first started, to try and manage the bleeding, the pain. That didn't really do a whole lot, other than make my periods even more irregular. And then I tried countless other medications to manage the heaviness, Tranexamic acid, Mefenamic acid, pain, Naproxen, Codeine, all different pain medications. I had the coil fitted during my laparoscopy to see if that would work better than the pill. That hasn't had any impact. So now we're kind of on a bit of a last ditch effort with trying the chemical menopause injections.

Speaker 4:

You are listening to the Sunflower Conversations with Chantal. To share your story and find out more information details are in the show notes.

Chantal Boyle:

To make a decision to have something like that, which doesn't normally come until you'd be like late forties, fifties, sixties. What was the decision process, the thought process about agreeing to do that?

Aimee:

Yeah, so it was mentioned to me back in September, when I first saw my specialist and I refused it then. I said I wanted to try the surgery first, because I had had some relief from it last time. So I wanted to give that a go first. I've heard a lot of stories from a lot of different people about how it affected them. And it's a scary thing to think about. You are in menopause for the time you're on the injections, but it has long term effects on your body as well. So even when you come off of them, like Gemma said earlier, the effects on your bones and your heart. My consultant said that your bones don't fully develop until you're in your twenties, but the menopause injections can affect your bone density. So because my bones are already not fully developed, because of my age, it can have a greater effect on my bones as well.

Chantal Boyle:

Are you hoping that this is a gateway to you being able to really start your life again?

Aimee:

Yeah. So it's a bit of that, trying to get it under control. I'm only able to be on it for maximum of six months, but they don't want me on it longer than three months.

Chantal Boyle:

Once you've done the six months, does that mean then that you will never then go back to having periods? If you wanted to have a child, you won't be able to?

Aimee:

No. So you are only in menopause for the time you're on the injections.

Chantal Boyle:

I see.

Aimee:

So I've been having a lot of issues with my bladder. I went into retention, I've got a catheter. They don't think it's endo related. But because of the overlapping symptoms, it's really hard to treat the bladder issues at the moment. So part of what my consultant is thinking is, if we can almost put the endo side of things to sleep for a few months, we can work on trying to treat the bladder issues.

Chantal Boyle:

That's interesting. So Gemma, do you know whether this is a hereditary condition?

Gemma:

It's not been proven, but I think, I know myself, my auntie, she has endometriosis and I believe my mum probably did have endometriosis, looking back at how she was when I was younger. But there's nothing being proven that's hereditary. But a lot of women that you speak to, you find that there's somebody in their family's got it.

Chantal Boyle:

Does endometriosis affect fertility generally?

Gemma:

I think it can. Yeah. Yeah. I think some women really struggle to have children when they've got endometriosis, because obviously, it's on your fallopian tubes. I know there's a number of women have had to have fallopian tubes removed because they get blocked. I've got quite a few girls like that. But we've got quite a few girls, we call them miracle babies and they've had babies. We've got one of the leaders with one other group, she just had a baby a few months ago and she was a miracle... He was a miracle baby. And she's had a right time of it as well. So yeah, I think it is known, but I don't think it's ever been proven that it causes infertility.

Chantal Boyle:

And have either of you tried alternative therapies? So I'm thinking acupuncture, for example.

Gemma:

I've tried loads of physiotherapy. I've tried Reiki. I've tried CBD oils. I'm currently on cannabis program just now. So it's pure THC and I find it really helps.

Chantal Boyle:

I've heard some fantastic things about the THC. Really, working miracles.

Gemma:

That is very costly, but I definitely find it has helped me a lot.

Chantal Boyle:

Have you tried anything else, Aimee?

Aimee:

Yeah. So I've tried CBD oils, CBD kind of creams that you can rub on the area. I tried... I've had a lot of CBT therapy to try and help manage the stress side of things, because stress can cause flareups. I use TENS machine to try and help with the pain, kind of, what every person I know of endo uses heat pads, all sorts of. I try as many natural things as possible, like taking in different supplements and vitamins to try and manage the different symptoms. Kind of anything to avoid putting these chemicals into my body as possible.

Chantal Boyle:

I've incorporated questions from the Sunflower Community within into this interview. But I've got one I wanted to read out, Gemma, you would be up for that.

Gemma:

Okay.

Chantal Boyle:

This question is from Lisha. Can my GP refer me to my local BSGE endometriosis team? I read that they can, but my GP has told me it has to come from my gynaecologist. I'm under a general gyne at the moment, and recently had surgery to remove endometriosis. But as it was done by a general gyne surgeon and not a specialist, they were unable to fully remove all active endometriosis that's on my bowel, as a specialist, colorectal surgeon should have been present, but wasn't due to it not being performed by a specialist, gyne surgeon. My postop isn't for another six months, and due to increasingly long referral wait times, as it is, it would be in my best interest to be referred ASAP. I wouldn't want to add more time to be seen under a specialist while still suffering as a result of my surgeon being unsuccessful in removing all endometriotic tissue, due to lack of specialism and experience. How can I progress forward with this in the best way for my care?

Gemma:

So I believe she can get a referral from her GP, her gynaecologist consultant doesn't have to do that. Her GP can do that for her. But I'm not a hundred percent sure what it will do to... Even just the relationship that she's maybe got... I'm trying to think, was it Emma that responded?

Chantal Boyle:

Yeah. So she said... So basically she said, yes, a GP can. To get a referral from your GP or consultant to one of the BSGE centers, you will usually need to have, or be suspected to have involvement of your bowel or bladder. The NICE guidelines on endometriosis is also useful when trying to get a referral to an endometriosis specialist. The guidelines and quality standards were developed with the aim of improving diagnosis and ensuring prompt and appropriate referral to secondary care. So I think that Lisa can go back to her GP, I would say, with that advice, with what you've said, and push for that referral. 

Gemma, can you tell us what does Endometriosis UK do? Obviously you are a lead volunteer for this charity, but can you tell us a bit more about what they do, and who they do it with.

Gemma:

So Endometriosis UK are... We try and improve the lives of women affected with the condition. Try to decrease the impact it has on those with the condition, and their families and friends. Endo UK have support groups all over the UK, and in most regions, with new groups coming on all the time. I know we just had a new group in Scotland called the Falkirk Group, in kind of Sterling area. So they have new leaders coming on board all the time, and it's all kind of done through social media platforms. Each group holds a support group meeting every month, whether it be online, face to face. We do wellbeing walks. So we meet up with girls and just generally go for a walk and chat, and it's really good just to meet other people and see how they're feeling. And of course it's Endo Awareness month this month or Endo Action month, they've changed it. So there's a lot going on, not this month, next month, March. Sorry. There's.

Chantal Boyle:

Nearly there, nearly there.

Gemma:

A lot going on. So we're doing the one in 10 challenge. So it could be anything from run 10k to do 10 squats a day, bake 10 cakes, have a coffee morning at 10:00 AM, invite 10 people to join a quiz, read 10 books that... There's loads of things going on in March. I know myself, I've arranged a 10k step challenge. So I've got myself and 20 or 21 other women, are walking 10,000 steps every day for the month of March. So we're hoping to raise a lot of awareness, hoping to raise a lot of money. And we're going to do our final walk on the 26th, as a group, together.

Chantal Boyle:

That's brilliant. Well, in the show notes, we'll put a link to Endometriosis UK, and Aimee we'll put a link to your Instagram account as well. But perhaps, I don't know if you want to put a link to your fundraising, Gemma, and maybe we can help get some more support from the Sunflower wearers for your 10,000 steps a day. You'll be super fit by the end of March. Do either of you have any advice for someone who's listened today to our conversation and experienced some of the things that we've discussed? I'll come to Aimee first.

Aimee:

My main bit of advice would be, don't stop advocating for yourself. You know your body best. And despite what the doctors say, if you think something is wrong, don't stop fighting for the care and treatment you deserve. You know how you feel and you know if something's not right, so don't give up fighting. Don't feel... It's hard to not get put down when you're being dismissed, but just don't stop fighting, because it is the only way you will get the care and treatment you deserve.

Chantal Boyle:

That's lovely. Thank you, Aimee. Gemma?

Gemma:

Yeah. So I absolutely echo what Aimee's saying. You have to keep fighting. Don't give up. You know your own body, you know when something's not right, and just don't let anybody be fogged off and reach out to these support groups, reach out to Endometriosis UK. Again, there's lots going on, on all social media platforms. Just believe you're not alone. You're not alone. There's hundreds and thousands of women out there, and we're all here to support each other. So please just keep advocating and just keep on fighting.

Chantal Boyle:

Well, you two are clearly fighters. Your journey has been a really tough one, Aimee. You are still so young and you've been through so much already, and Gemma has turned her battle into offering support to other people as well. So I think you are both amazing individuals and I am very honored to have learned so much more about endometriosis than I knew about before. And as Aimee says, be your own advocate, back yourself. And will you please keep in touch.

 Speaker 4:

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