Endometriosis

Periodically is back for Season Two. We are still going to be talking to you about all things periods and chemistry, but this time we have a twist. This year we are very grateful to welcome guests onto the podcast from all over the UK. In our next six episodes our guests will be talking to us about their experiences with menstrual and reproductive health, where we take a deep dive into topics ranging from endometriosis, pregnancy and the menopause to name a few.

Our guests represent a wide range of experiences and are at different points in their career, and we hope this will shed light on the impact that menstruation can have at all points in our lives. We still continue our quest to find out and talk about how menstruation can sometimes just get in the bloody way. This year, we'd like to thank RSC Inclusion and Diversity Fund, the University of Oxford Chemistry Department and the EPSRC funded OxICFM CDT for supporting the podcast.

Your hosts today are Sophia, that's me, I'm a fourth year chemistry student at Oxford. Hi, I'm Lottie. I'm also a fourth year chemistry student at Oxford and we're also joined today with our first guest of the season, which is Tiffany. Hi, thanks for having me, I'm Tiffany, I'm a fourth year PhD student at University of Oxford.

And today we're going to be talking about endometriosis. So endometriosis is a chronic condition which affects one in ten people with periods in the UK, where cells that are similar to the endometrium, which is the lining of the uterus, end up growing outside of it. Experiences of endometriosis can vary a lot between individuals, but symptoms include severe pain during periods, heavy periods, pelvic pain, nausea and constipation.

There is currently no known cure but treatments include painkillers, hormonal contraceptives and surgery to remove tissue or organs affected by the disease. Endometriosis is notably difficult to diagnose, taking an average of eight years from the onset of symptoms according to Endometriosis UK and with patients often being misdiagnosed or struggling with their symptoms being dismissed by doctors.

So in this episode we're joined by Tiff who's a PhD student in Oxford and who will tell us about her experiences with endometriosis. So thank you again for joining us on the podcast today. To start with, would you be able to tell us a bit about your experience with having a chronic illness and studying for a doctorate in chemistry?

Yeah, so my experience started on my final year of my integrated master's on my year abroad in Japan.

Before I went on my year abroad, I was on the mixed contraceptive pill, but I couldn't take enough of it with me, and so while I was in Japan I had to come off of it and while I was there, I woke up in the middle of the night one day, feeling like my appendix had burst and so I knocked on my flatmate's door, I couldn't speak Japanese, but my flatmate could and she took me to the hospital at 4am, where I had a CT scan and they couldn't see anything and they just told me I was constipated really.

Sent me away with some laxatives and then a couple of weeks later I was back in the UK. So at this point when I came back to the UK and then started my PhD at Oxford, I still didn't have a diagnosis. During the time between finishing my masters and starting the PhD I'd switched to the progesterone only pill which hadn't changed any of the symptoms, which was mostly really intense, sharp pain at the bottom right abdomen, which is why I thought it was appendicitis.

But because I was getting migraines with the mixed pill, I had to change pills, so that was all unrelated, but there was no real improvement to anything and then while I was at Oxford, I decided to change to the Mirena Coil, just for improving periods, unrelated to the pain, because at this point I still didn't know that they were related and then the pain was becoming so unbearable and so frequent that I would be able to get into the office or into the lab maybe

once a week on a good week and the rest of the time the pain was either too high or I was too chronically fatigued to even go in and do my work there. But thankfully, maybe not thankfully, the work I'm doing, I can do a lot of it from home and so I was very flexible, my supervisor was very understanding and so I felt like I had to do a lot of work on the good days so that I would make room for the bad days.

But then eventually the pain became so unbearable and so frequent that I did take myself again to the GP this time at the college clinic and I don't know if it was the university setting and that it was affecting my work, but they took me quite seriously and I brought up the fact that my mother had endometriosis and that my cousins had endometriosis and then I was forwarded on to a gynecologist in Oxford who did a really great job, booked me in for surgery a year later

and I had that surgery, laparoscopic surgery to snip it out and now six months on things are much more improved. That sounds really difficult, especially given that you're in a different country

with an unfamiliar system and language at the time of sort of the onset of symptoms being really bad and so between the time period of your diagnosis and your surgery, were there any strategies that you used to help to manage your symptoms? Mostly it was flexible working, knowing my body well enough to know when a bad day was coming, but also having very candid discussions with the people in my lab and with my supervisor about expectations for myself and how I was going to get the work done.

But as I said, thankfully, I'm a physical chemist or a chemical physicist, and so a lot of the work is just analysis. I don't have to be in the lab all day and I want to use the word lucky, I don't think it's the right word in this case, but I was lucky in the sense that I don't have to be in the lab all day and so I could work remotely from home. I wasn't bent over a table or having to skip lunches or all of that kind of stuff.

The pain management was mostly over the counter painkillers, lots of working from home or working from my bed on some days, hot water bottles, CBD balm, Tiger Balm, but then also talking to the university counselling service who referred me to a mindfulness course. That might be for other people, but turned out to be absolutely not for me.

Maybe it was trying to focus too much on my body and being too aware of the pain, but that definitely didn't help and eventually going for the surgery was just the best thing for me, but obviously it's different for everybody. And it sounds like your group was really supportive, which is great. Did you feel like this had an impact on your research and how did your supervisor respond? Did you have conversations with your supervisor?

So when I started my PhD, it was during the pandemic and so I was very used to working from home just out of necessity anyway and then as the pandemic faded away, my group tried to fade back into the lab, but I was already so far into the PhD that actually there was not really that much that needed to be done or changed in terms of the way I was working.

But it was still quite important to be able to get into the lab, to forge communications with the rest of the people in my lab, to help new students out and to finish up any extra work they needed doing. But I think everybody at that point in my group was very aware of my endometriosis and if I wasn't in, that was fine. When I did come in on the rare occasion, everybody was very excited to see me, so I don't think it was particularly productive on those days.

But knowing that the pain was unpredictable, and that the pain days lead to days of fatigue as well, I would try to optimise the way I would work on the good days so that I could be a bit more relaxed on the bad days. So I do a lot of coding, there's lots of ways I can optimise that to make things easier for me later on, so I don't make mistakes and when I do make mistakes, it'll be easy to correct.

So there's all of that, but now I'm starting a new job soon after finishing my PhD and that will be in the lab most days and so there is still quite a bit of anxiety around that. Haven't been used to that very much, because the whole pandemic and then working from home. So I'm not very used to working in a lab every single day, but also the anxiety of starting a new job and how to work around having a chronic illness in a new setting with new colleagues is always a little bit stressful.

It's so good that you've had sort of that support so far and that flexibility in your PhD because I can't imagine just having both the physical load of the symptoms and managing that and then also the mental load of how do I talk to people about it. So yeah, that sounds like a lot.

But how do you feel that you were supported by the university and do you think there were other ways, any ways that you could have been better supported by Oxford as a university? So obviously my supervisor was really great in this situation, just let me get on with things. If I did the work to a good enough standard that was fine, it didn't matter when I was doing it, but it really wasn't obvious where to get the necessary information.

So knowing that I had the surgery coming up and not knowing if I was going to have to take time off or if things would get worse, how would that affect my funding for my PhD? And there is information somewhere about whether I would qualify for time off, but because I wasn't applying for time off, I just wanted to know in the worst case scenario, I have this surgery coming up, what do I need to do?

It was very difficult to try and navigate the logistics of this situation and so I think there's definitely a room for clearer guidelines for people who have chronic illnesses or disabilities or even one off illnesses or injuries that affect their work and the time that they need to take off. But it would also be really good for there to be more conversations about chronic illness and disability within the department.

But as someone with a chronic illness, to be part of that conversation all the time is a little bit exhausting and so really what should be happening is policy change to make things easier for everybody, not just those of us who want it, because I think everybody will find that once it's better for everybody, it's better for everybody.

I wonder if you could talk a bit about how having the surgery was and how that's changed your experience since having the surgery and how that time off perhaps around the surgery was dealt with, for you? So like everything else with endometriosis, all my experiences will be very different to everybody else's. But I went into the surgery not having a formal diagnosis, but the surgeon had said, even if I don't have endometriosis, I'd be great for the study of can we diagnose it well.

So I think that was also quite positive being in a university setting where even if I don't have it, they're curious to find out if I do, so I was in a good position there. The surgeons and the staff were really excellent, they didn't talk down to me, they validate everything and I think it's because they're specialists in endometriosis, which is really rare to find and the surgery itself, obviously, I wasn't awake for it, but once I woke up, I had a terrible reaction to the anaesthetic.

Not an allergic reaction, it just made me incredibly nauseous and the first thing, I don't know if this is going to be too much information actually, I'm instantly just vomiting, dry mouth, asking for water, every time I took a sip of water, just vomiting everywhere until the nurses told me off and they're like, you cannot be asking anybody else for water and they gave me three different types of anti nausea sickness drugs and nothing was working.

I was shivering, I was boiling hot, still throwing up, hadn't eaten for 24 hours and so it was at that point I was like I'd rather just have endometriosis. But once that had all subsided and I woke up, I was much more hopeful. My stomach was painful because I had the four keyhole scars, but the pain wasn't anywhere near the kind of pain I had with the endometriosis, so I didn't really need any painkillers at that point.

Maybe that was me being stubborn about But I stayed one night after the surgery and then went home to recover for two weeks. I think my personality type is that I just have to be working all the time, so I did do work from home while I was recovering from surgery, checking on the teams, channels, et cetera and then after the two weeks, I could move around a bit more, I went to a conference, I got everybody else who was at the conference with me to carry my suitcases.

It was in Crete in June, so it was boiling hot at the beach, lying by the poolside.

So it was very relaxing and then the endometriosis pain after the surgery didn't immediately subside, but you can't really tell the difference between is it endometriosis or is it because I've been cut open where the endometriosis was and then slowly after a couple of months I could tell the pain was becoming less intense and less frequent so that the days where I did have pain, there are enough pain free days before that to have enough energy to deal with it and now six months

on, I can maybe get into the lab every single day of the week if I wanted to. There's no point because I'm writing up my thesis, but if I wanted to, that's really good. The pain is maybe a couple of times a month coinciding with like ovulation and the first day of a period, which I'm still not getting a full period, I still have the Mirena coil in, so hoping that will disappear again soon as well.

But then if the pain carries on, the doctors have suggested maybe going back on the P Pill, which I'm hoping we won't have to do because the P Pill made me a very sad girl.

So you mentioned that when you were taking time off after the surgery to recover, you said that, you know, it's your personality, you were still doing work, but do you feel like that was just you or did you feel pressure from the fact that it's Oxford or doing a PhD and also the fact that the uncertainty around not knowing what was going on with taking time off and all of that, if you're still going to have your funding? Yeah, there was definitely some of that.

I didn't know if I would be able to extend my funding if I needed to at the end of the PhD, if I needed more time and so there was definitely a feeling of, I need to finish my work just in case I need to take more time off later and because I was writing papers and collaborating, you don't want to tell every single person in your collaboration that you've had surgery.

Maybe I should, maybe this should all be changed, but there is some kind of degree of professionalism where you say, I'm taking time off, but you want to still deliver for the people that maybe aren't in your group, but you're working with and that's maybe a subconscious thing of my own.

Maybe that's a whole problem by in itself, but I think because the work I could do from home, writing papers or writing code, it didn't feel physically laboring and so I decided to do it for better, for worse, keep myself occupied, but there shouldn't have had to be a need for it.

You know, it's so tough that, it's not just endometriosis, it's a lot of different disabilities and chronic cancers and all of that you don't have sort of a precedent for knowing what kind of, how much time off you can take and it shouldn't fall on the people who are affected to have to decide how much time off they need and all of that and how much they can afford to take and...

Also, I think a lot of people have said to me things like, Oh, it's completely my fault, I just, I decided to keep going in the lab when I wasn't able to and I think you're right, I think we actually can't even imagine that it could be a cultural thing or a systemic thing that we feel like we can't take a day off when we're in pain or when we physically don't feel well enough to be in a lab or in a work setting.

But we actually, yeah, we still think it's our fault in some ways that we could have made that decision. Whereas perhaps it might be something bigger than what we're considering. It's maybe also the type of work you're doing as well. I think when you're used to doing heavy manual labor in a lab or working long days in lab and then when you're off sick and the only work available to you is just writing or reading, you kind of feel like, well, why shouldn't I?

Actually, to have a social change to being able to take that emotional time off as well when you need to be recovering. That is such a good point, the sort of emotional recovery side of things. Was that something that you felt you were able to create space for? Is that something you feel like you're only now finding time for now that you've got over some of the physical hurdles? Yeah, during the pain, pre-surgery, it was emotionally taxing.

I always felt very flaky making lots of plans and then unpredictably being in pain and having to cancel and there's an emotional aspect to that, feeling a little bit like a weak link in the lab, not being there every day to help with things in the lab and feeling like I have to overcompensate with the work I do with coding or writing papers, or helping out with other things with other lab mates.

But yeah, the anxiety and depression that comes a little bit with being isolated, being in pain all the time, being chronically fatigued, not feeling like you can have candid conversations with everybody, having a bad day but not being able to say to somebody you're having a bad day when they ask, oh, how are you? That was always quite hard and knowing that the people who care about you, they would care enough to understand.

When it's every day chronically over a few years, you also don't want to emotionally labour the people that you care about, so there's always a bit of disconnect there. So that's why I went to see the university counselling for that, I just need somebody whose job it is to listen to me vent about having a hard time.

But then after the surgery and things starting to improve, being less tired all the time really helps and so I guess this is why it's important when you are chronically sick or anything else, to take that emotional well being time as well. Things always are so much better when you've had a good rest or when you're not tired or when you're not in pain, so to make that space for yourself is really important. You talked about the sort of social isolation side of it.

Did that change a bit during the pandemic? Some people with chronic illnesses and things, when everything moved online, said that they felt much more involved because there was much less of that physical design barrier in the world. Was that something that you experienced or? I think this is going to be a combination of lots of individual and worldwide factors.

So while I was in Japan, obviously that was a very isolating experience, I didn't speak Japanese and my Japanese lab mates didn't speak very much English, so at that point I was very used to the social isolation and just wanting to come home and then in the pandemic, being on the P Pill at that point, I was just a sad girl.

Every day at four o'clock we called it the crying hour and I think that was just a combination of pandemic starting, not being at home, the shock of your system coming out from Japan back to the UK, it was very overwhelming. But then everybody else being put in the pandemic kind of levels the playing field a little bit.

I know lots of people had a terrible time, but as somebody who is just very used to that or forced into a social isolation, it was a little bit nice for me in a selfish way, that people were organising video calls or playing video games online, slowly your hobbies become everybody else's hobbies.

There's lots of things for you to talk about, everybody's playing Animal Crossing and then moving out of the pandemic back into the lab and seeing people really enjoyed working flexibly or remotely and some of that still seeping back into work in the lab has really helped me with endometriosis dealing with working from home and flexibly, people are much more aware of how that can help people.

So you mentioned earlier that there's a history of endometriosis in your family and I was just wondering if that helped in a way to know other people who've struggled with this and if you've reached out at all to anything like, I don't know, support groups if that's there of other people who struggle with endometriosis and if that's been helpful to you or, yeah.

Yeah, so the diagnosis time typically is like eight years and there's a huge Instagram community of people sharing their stories of endometriosis and some stories of people waiting 15, 20 years to be diagnosed and it's really difficult because the symptoms cross over with so many other diseases, but one in 10 people with a uterus have endometriosis, so it's quite shocking that people have to go so long without a diagnosis.

But having family that has diagnoses and having somebody related to you that has endometriosis, I think something like triples your probability of having it and I don't have the citation for that, so don't quote me on it.

But having a family brings it to your forefront that maybe, I have it too and that the time between the symptoms starting and the diagnosis was two to three years instead of eight to twenty years, so that really helped and then once you have a diagnosis, you can get on Instagram, Google and see your experiences and not, you know, so isolated from everybody else as everyone has their own unique experience, but actually there's so much shared medical

trauma, so much shared symptoms, so much shared emotional labor with it. You also talked about your experience with getting diagnosed being actually quite a positive one relatively because the doctors were doing trials and they were experts in endometriosis so they were genuinely interested.

So sort of with that relative to other people's very difficult experiences with pain being dismissed especially women's pain is very often dismissed, do you have a recommendation or something like that you could give to clinicians who are working on this and who've got patients?

I think trust that the patient knows their body well. I think a lot of stories of other people who've struggled to get a diagnosis is that they're not believed, but actually if you're coming to somebody frequently with a problem and you can't find the solution, it's very likely that the patient has tried to figure it out themselves and so I think believing the level of pain is very important, but also to be open to new ideas. I think the progress in diagnosing endometriosis has been very slow.

I think we can all agree that diagnosing women's health problems in general is a whole different kind of work, well same can of worms really, but a big one and there just needs to be a shift in the whole outlook, ah, that's a huge systemic issue that you don't really know how to diagnose that myself. Yeah, being open to understanding, being a bit more empathetic to patients and their experiences.

I mean there's a lot of information on the internet, not all of it true, but knowing that your patient is probably taking the time to try and understand it themselves and to take on board what they already know. Also, it would be really helpful if, for especially students, when you move away into a different place, for that medical information to follow you properly.

Moving to a different GP and having to go through everything again, I think that's important for the health providers to understand, especially trying to get a diagnosis as a student that actually you might need to try and get the whole picture again.

That made me think actually of something that comes up a lot in my conversations with my friends about just being an undergraduate in Oxford and a lot of the time if you have any kind of, like a disability support plan or anything like that, anytime you need to put in a request with the university, like requesting to stay over the VAC period in college, you often just have to put in basically a request with welfare and the accommodation team and you have to list

every single reason why all of the support that you need all of like the reason why you want to stay for example and all of that and it's just it feels absolutely exhausting because you shouldn't need to do that if you've got this diagnosis if you've got a support plan in place, they should know that and you shouldn't have to be justifying it all of the time and it's like what you were saying with when you go to a new GP and you have to go through everything again even though

that information should already be there and yeah you shouldn't need to fight for it all of the time and fight to be believed and justified in your needs.

Yeah and I think in terms of summarising a bit what we've talked about, that idea of moving from the onus being on students or PhD students, you know, staff with disabilities to self advocate and fight for every bit of time off, every bit of accommodation that they need, to moving to a model where that is accommodated for and there are options put in place and policy changes that are implemented, so that people that need to take time off aren't feeling that they have to be

working from their sick bed with their hot water bottles and a safety net from the department, in terms of resources and clarity about funding as you discussed for your PhD and having perhaps a disability, or welfare, or an EDI officer within a department rather than in Oxford. This system is usually within colleges that there's support for certain individuals or for staff or especially for postgraduate students that support through college can often not be as strong as it should be.

So having departmental support as well would catch specialisms especially within chemistry that, if you go to someone in college who has an English Literature degree, you might not understand the physicalities of being in labs and things like that. Well, thank you so much for listening and especially huge thank you to Tiff for being such a fantastic guest.

We've learned so much from you and I'm sure our wonderful listeners have So we hope you really enjoyed our discussion around endometriosis, and if you're interested in learning more about today's topic, then please visit endometriosis-uk.org, and to find out more about the podcast, you can find us at periodicallyoxchem.wixsite.com or follow us on social media @periodically_ox and tune in next week for our next episode.

Again, we'd like to thank the RSC Inclusion and Diversity Fund, the University of Oxford Chemistry Department and the EPSRC funded OxICFM CDT for supporting the podcast.