Let’s Talk About Endometriosis

Read the Q&A below:

Hi there. I’m Dr Deborah Leveroy at neurobox. I’m delighted to be here with our sales associate, Becky, today. Becky has agreed to come and share her experience with newer diversity and women’s health. Hi, Becky. Thank you very much for joining us today.

Thank you for having me. I’m looking forward to hopefully helping raise awareness about endometriosis and neurodiversity.

I know this is something you’re particularly passionate about, and you’ve done some training on it already, haven’t you, I think?

Absolutely. And I’d love to grow the awareness and get people talking about this in their workplaces.

So, can you tell me why you’re interested in this subject? Tell me a little bit about your experience, if you don’t mind, personally, with your health, with women’s health.

So, I was diagnosed with endometriosis back in 2021.

I had unknowingly been experiencing symptoms since I was 16. I didn’t think anything of it at the time, and it was always put down to a bad period. I would often experience nausea, vomiting, and fainting – so it was quite bad at the time!

I frequently had to get picked up from school by my parents, because of the symptoms.  And unfortunately, it followed me to the workplace. I was out on the road training a lot of the time and I’d find a couple of days a month that I would not be able to leave the house due to a fear of feeling nauseous, feeling sick. I felt that I had to be somewhere safe. I couldn’t get on the train or anything like that. It got to the point where I had to get picked up from an event as well and taken home.

I’d gone to a conference to learn about some of the new assistive technology out there, but the pain was so severe, that paracetamol and ibuprofen were not taking the edge off, and I could not sit there any longer. I was very lucky and fortunate to be in Cambridge and someone was able to come and pick me up at that time.

It peaked about 5 years ago when it started to get really, really bad. And I knew I couldn’t keep going through these symptoms without support, and it caused a massive decline on my mental health.

My anxiety increased because I didn’t know what was going on. None of my other friends were going through this. They’d be able to brush their periods off. They wouldn’t be crippled over in pain, unable to move or anything like that. I knew something wasn’t right.

It started to affect work, which I really didn’t want to happen as well.

And how was work in terms of did you feel able to share it with your employer at the time? How did that conversation go?

It was quite a hard conversation to have because I didn’t know what was going on, so I didn’t know what to say, other than that something is not right. All I could tell them was that I was going through appointment after appointment after appointment. Again, you then become so worried that you’re taking so many hours off work to go to doctor’s appointments to try and get some answers. You then can’t give the workplace a reason for why you’re struggling, all you know is that it’s going to happen once a month or it might happen in between. It was a really hard thing to explain to someone and to other colleagues.

Luckily, they were understanding and obviously allowed me to have the time off for those appointments.

But when you don’t know what’s going on yourself, you can’t really tell that to your employer either.

Of course. And how was the process of getting a diagnosis?

So challenging. So, So challenging.

I was having doctor’s appointments once a month for at least 2 years, trying to get the help, trying to get the referrals, saying that something is not right. And I’d kind of go and bounce from different doctors – they didn’t keep me with the same doctor, and each time you’d go in and sit down and be like, you’re just anxious.  You’re an anxious person. You’re overthinking it. You need medication.

And I remember sitting there like, oh, I know I’m an anxious person. I know everything. I’ve accepted that. We work on that. But there is something wrong with me. You have got to help. I am in this pain. I shouldn’t be having to fall asleep on the bathroom floor, so I’m close to what I need or something like that. This is not normal to go through…

It got to an appointment, a really, really bad appointment that I had with a GP and I said, right, that’s it. I’ve had enough. I’m going to go private. I’ve got the savings. I knew I didn’t particularly want to go down this room, but I knew I needed to know, and I needed to know now. And I didn’t realize how important kind of getting that diagnosis was for me.

As soon as I had gone private, the gentleman that I saw was completely different. He sat down and he was pretty sure it was going to show up in 1 of 2 places. So, it’s either going to be on my ligaments or it was going to be my ovaries. And he was confident of this. I’d tried all the other stuff that I’d recommended…

I was doing weight bearing exercises. I was stretching. I was having sports massage on my hips to make sure they were okay. I was ticking all the boxes that I should do before I went private and just before we went into our first lockdown, I had my MRI scan privately and I got that call.

Actually, it was a day that lockdown was announced that I’ve got the call, from him.

And he was like, yes, you are showing that you’ve got endometriosis on your ligaments.

For me it was quite an eye-opening experience, and I think everyone kind of thought that I was going to be sad about it. But for me, it was an answer to all those questions, it was in answer to the anxiety, the overthinking, the belief that I was right and there was something going on.

He also explained that there was support and management out there to help with the pain that I was experiencing. So, it was kind of that answer of like, okay, I can now move forward with it.

Over the years, I have struggled with my management of endometriosis because it is quite hard thing. There is no cure for endometriosis, which is a lifelong condition that I’m going to have to potentially face most days. And a lot of the time it is usually only managed by contraception and diet-based things. I’ve had to say goodbye to gluten – I miss bread.

I tried to go back through the NHS to get more help and again, to get back into the NHS, to get that further support took over a year to get back in, to go and see a consultant who then did put me on third medication that does help manage it as well. But it’s got a combination of different management techniques that I’ve had to pop into place and it’s still quite a lot of understanding – I’ve had the diagnosis for 3 years now. And I’m still going through a lot of discovery of things as I go along and how and what can help me through it as well.

Can you talk a little bit about what you mentioned that when the doctor called you, that he said, you know, we can see that it’s in the ligaments. Can you explain what that means for us?

Yes. So, endometriosis, the way I like to describe it is like a callous on your hands.

Normally, the lining of the womb breaks down, we menstruate, and it sheds.

When you get endometriosis, cells like the ones in the lining of the womb grow somewhere else, where they shouldn’t. But there is no way for it to, like, shed, so it continues to build up like a callous would on your hand.

So, mine is on the ligaments that are around my womb. So, therefore, it’s going to have repercussions around that, but also on other bodily functions that you might expect as well. So, it just can’t go anywhere, so it keeps building, builds that discomfort, affecting you in so many different ways. And a lot of the time the challenge of even getting a diagnosis, as it’s often misdiagnosed as it can affect other normal bodily functions, such as going to the loo and instead get misdiagnosed as IBS for example.

So, it’s a hard thing to get a diagnosis for and kind of understand, but it can grow in so many spaces too. Like, it’s often found in fallopian tubes and ovaries, which then obviously are going to affect fertility. It can be it can grow in your urethra. It can grow in your bowels. It can grow in the kidney tract. It can grow in so many other places.

And it all depends on the person, on how they manage it, and what symptoms they experience, and how it can vary so widely, really.

And in terms of you mentioned that the specialists have put you on medication, is there any side effects with that medication?

No. Not that I’ve noticed. It does help with managing the pain element of it. But this has to be taken in conjunction with contraception, and with contraception we know that there is the repercussions of the side effects with the hormone changes.

So a lot of the time the anxiety increases, there’s weight gain involved and everything like that. It is still a lot of management and taking it stay and working out again suppose what contraception is then right for you, that your symptoms are going to be managed better with those side effects and everything like that. But as for the other medication, it’s half a little tablet every day to help manage that pain. And as I said, I cut out gluten, which I am devastated about, but I often find that that means I don’t bloat. So before I used to bloat really badly, like my belly can grow up to 7 inches, which I didn’t realize. One day, I felt absolutely massive and it just ballooned and  I was so uncomfortable with it and actually reducing that gluten helps a lot with it kind of managing and stabilizing it.

Wow. Great. I’m pleased to hear that. And you mentioned that you self-identify as someone with dyslexia and possibly ADHD traits. Do you think that these experiences have impacted your endometriosis journey in any way?

I think in a way, it’s exacerbated my neurodifferences. Like, I have always struggled with reading, writing, and spelling kind of elements of it, and kind of having to absorb the content within. And I often find with endometriosis, I have bad days. I can’t say that I’m going to be the medication and all the steps that I go through every day is going to help.

I will have days that my anxiety will increase, or I will feel bloated. I will feel swollen. The brain fog sets in. I still get the nausea occasionally and everything like that. And I find when I have these days where I kind of flare and I’m uncomfortable that instead of reading something like twice to absorb the content within, I’m having to read it 4 or 5.4 or 5 times. Or something that I’m used to writing, like my reports from my assessments, can take me a lot longer because I’m getting stuck with the words.

And obviously, we’re in an assisted technology world. And as much as I’ve got some of the assisted technologies to help with these elements, I still find it a real challenge on those bad days.

And again, I am someone that much prefers to articulate and talk about something and discuss it, but even on those bad days for me to be able to articulate myself correctly I will often stumble over my words. It becomes a lot more disjointed. I can’t get my thoughts out clearly. I can really feel it affecting other elements when on a bad kind of day. Obviously, the mind with the kind of anxiety element of this as well. My brain is going a hundred and 50 miles an hour constantly, which means I will often miss words out.

So I think I’ve said something, again, either in writing or even in communication times and that will be where I kind of fall over and I will get stumped. So I really think that having a neurodifference and endometriosis, it will exacerbate it. It will make things potentially more challenging for you.

When you are having a bad day, when you’re having to deal with the pain, the uncomfortable feelings that you’re getting, the nausea, everything is going to become more of a challenge, more of those coping strategies that you have built yourself, go out the window. They’re not going to work and it’s kind of re-adapting for it as well.

Do you know of any research or people talking about this link between specifically endometriosis and neurodiverse traits?

Yeah. So I’ve done a little bit of research myself into this, and it looks like there is starting to be more research going into neurodifferences and endometriosis. So, for example, there’s a study out there that showed that women with endometriosis were twice as likely to have ADHD than those without the condition, which is absolutely fascinating.

Wow.

And there are other studies linking neurodifferences and endometriosis with genetics. And there are other neurodifferences that are kind of developed such as like depression and anxiety along the way.

‘Often it takes on average a woman 7 and a half years to get diagnosed with endometriosis.’

So to keep going through those knockback appointments with the GPs or the process of it, depression anxiety comes kind of part and parcel, unfortunately. And it’s then coping with that for the rest of your kind of life as well.

You’ve gone through that. It’s something that you’re going to have to cope with. So, again, there’s more research coming into the anxiety and depression with endometriosis. There are other links as well with because endometriosis is an inflammatory condition where it’s being linked to a high level of fibromyalgia.

So there’s plenty more research going out there, but I think there’s such a need for more research to be on it, to be better because I think, and is one of the reasons I really want to speak about this and kind of get everyone talking about it. People shouldn’t sit and suffer in silence about it.

It does come under the Equality Act, and there are adjustments that can be made for someone in the workplace so that they feel supported with the conditions and how it might how assistive technology or coaching or awareness about the condition might help. And I really would like to start getting employers, talking about it with their employers, again, 1 in 10 women suffer with endometriosis, which is a a staggering number.

Mhmm.

And by raising awareness, they shouldn’t feel like they should have to hide or mask this anymore. There is support for this and as an experienced workplace assessor, I always thought about starting and looking at what a bad day might entail, what strategies have they got so far, and what does a bad day look like? And, how can we develop putting other technology or other support systems in place to help that individual in the workplace?

So, I think I’m hoping, really, that there’s going to be a growth with the research that is going into endometriosis. And, by talking about this that we can raise awareness throughout the workplace to help women feel comfortable and feel supported with this condition and neurodiversities.

Thank you, Becky. I’m sure if somebody is listening to this, either it’s an employee or an employer, they’re definitely going to going to act. Can you talk a little bit just before we wrap up about what kind of adjustments you would potentially you could recommend to an employee.

And also, if someone’s listening to this, and they think, oh, that is all sounding really familiar. I think I might have endometriosis, where should they go? So, a little bit of signposting.

Absolutely. So, I think adjustment-wise, if you’re going to look at kind of like the brain frog days or the uncomfortable days, is the flexibility over working. We have all got used to remote working, which is a lovely way of working, but we’re seeing more organizations asking people to come back into the workplace now. And I suppose it’s having that flexibility for them if a bad day was to occur, that they have the flexibility that they can work from home when needed when they’ve got the resources around them to help.

Getting brain fog can be a massive 1 is unable to, like, decipher a task because of the pain that you’re in. So again, you could look at mind mapping tools that are out there to help plan, to help structure, to help see where you need to go and work first.

I also am a massive fan of coaching and building those strategies up. I think that is somewhere also to have a little look at. Sit down and work out what strategies you’ve got so far and where they can be developed further and to really build on kind of those and what a bad day potentially might look like, but also using those strengths that you’ve got to help go through them.

So, I think there’s a lot that can be done, but a one-to-one is needed for this assessment to work out what the best support is for that person.

As for the signposting, if this sounds familiar. There are plenty of websites out there that might be up to help, but my first suggestion would be to go to your GP. Book an appointment and explain the symptoms that you’re feeling and ask for that referral to go off and get yourself kind of in the system with the process.

I’ve had another close colleague of mine who as soon as she thought something was might be up, she was like, “can I sit down with you”? We had a chat about it, and she got herself straight into that system. And she got in. She’s had surgery on hers to try and help reduce the symptoms. But I suppose it’s the support around you. She felt comfortable enough to be able to talk to me and say, “I think something’s wrong. Can you help me”? And I was able to then go with her to any HR meetings that she needed. She felt supported, but I think to get to your GP and get that referral in place is the best thing to do.

Thank you, Becky. Really appreciate you sharing your experience and just the tips that you’ve given us, and yeah just where to go next is just really insightful and helpful. So, thank you very much.

Thank you for having me, and I hope this helps.