1 00:00:02,930 --> 00:00:07,420 Periodically is back for Season Two. 2 00:00:07,420 --> 00:00:12,090 We are still going to be talking to you about all things periods and 3 00:00:12,090 --> 00:00:14,520 chemistry, but this time we have a twist. 4 00:00:14,920 --> 00:00:17,880 This year we are very grateful to welcome guests onto the 5 00:00:17,910 --> 00:00:19,660 podcast from all over the UK. 6 00:00:20,160 --> 00:00:23,840 In our next six episodes our guests will be talking to us about their experiences 7 00:00:23,870 --> 00:00:28,110 with menstrual and reproductive health, where we take a deep dive into topics 8 00:00:28,110 --> 00:00:32,340 ranging from endometriosis, pregnancy and the menopause to name a few. 9 00:00:32,770 --> 00:00:36,670 Our guests represent a wide range of experiences and are at different points 10 00:00:36,670 --> 00:00:40,200 in their career, and we hope this will shed light on the impact that menstruation 11 00:00:40,200 --> 00:00:41,820 can have at all points in our lives. 12 00:00:42,080 --> 00:00:45,820 We still continue our quest to find out and talk about how menstruation can 13 00:00:45,820 --> 00:00:47,950 sometimes just get in the bloody way. 14 00:00:48,240 --> 00:00:52,250 This year, we'd like to thank RSC Inclusion and Diversity Fund, the 15 00:00:52,250 --> 00:00:56,140 University of Oxford Chemistry Department and the EPSRC funded 16 00:00:56,400 --> 00:00:59,610 OxICFM CDT for supporting the podcast. 17 00:00:59,800 --> 00:01:02,970 Your hosts today are Sophia, that's me, I'm a fourth year 18 00:01:02,970 --> 00:01:04,160 chemistry student at Oxford. 19 00:01:04,390 --> 00:01:05,330 Hi, I'm Lottie. 20 00:01:05,349 --> 00:01:08,470 I'm also a fourth year chemistry student at Oxford and we're also 21 00:01:08,470 --> 00:01:12,009 joined today with our first guest of the season, which is Tiffany. 22 00:01:12,050 --> 00:01:15,990 Hi, thanks for having me, I'm Tiffany, I'm a fourth year PhD 23 00:01:15,990 --> 00:01:17,200 student at University of Oxford. 24 00:01:17,619 --> 00:01:20,520 And today we're going to be talking about endometriosis. 25 00:01:20,800 --> 00:01:25,169 So endometriosis is a chronic condition which affects one in ten people 26 00:01:25,169 --> 00:01:28,910 with periods in the UK, where cells that are similar to the endometrium, 27 00:01:28,940 --> 00:01:32,169 which is the lining of the uterus, end up growing outside of it. 28 00:01:32,870 --> 00:01:36,490 Experiences of endometriosis can vary a lot between individuals, but 29 00:01:36,500 --> 00:01:40,900 symptoms include severe pain during periods, heavy periods, pelvic 30 00:01:40,900 --> 00:01:43,505 pain, nausea and constipation. 31 00:01:44,285 --> 00:01:48,315 There is currently no known cure but treatments include painkillers, hormonal 32 00:01:48,315 --> 00:01:52,234 contraceptives and surgery to remove tissue or organs affected by the disease. 33 00:01:53,045 --> 00:01:57,044 Endometriosis is notably difficult to diagnose, taking an average of eight years 34 00:01:57,055 --> 00:02:01,655 from the onset of symptoms according to Endometriosis UK and with patients often 35 00:02:01,655 --> 00:02:04,965 being misdiagnosed or struggling with their symptoms being dismissed by doctors. 36 00:02:05,245 --> 00:02:07,664 So in this episode we're joined by Tiff who's a PhD student in Oxford 37 00:02:07,845 --> 00:02:10,465 and who will tell us about her experiences with endometriosis. 38 00:02:10,570 --> 00:02:13,000 So thank you again for joining us on the podcast today. 39 00:02:13,290 --> 00:02:16,540 To start with, would you be able to tell us a bit about your experience 40 00:02:16,550 --> 00:02:19,700 with having a chronic illness and studying for a doctorate in chemistry? 41 00:02:19,740 --> 00:02:24,430 Yeah, so my experience started on my final year of my integrated 42 00:02:24,430 --> 00:02:26,550 master's on my year abroad in Japan. 43 00:02:26,940 --> 00:02:31,030 Before I went on my year abroad, I was on the mixed contraceptive pill, but 44 00:02:31,030 --> 00:02:34,160 I couldn't take enough of it with me, and so while I was in Japan I had to 45 00:02:34,190 --> 00:02:37,780 come off of it and while I was there, I woke up in the middle of the night 46 00:02:37,870 --> 00:02:42,879 one day, feeling like my appendix had burst and so I knocked on my flatmate's 47 00:02:43,479 --> 00:02:47,490 door, I couldn't speak Japanese, but my flatmate could and she took me to the 48 00:02:47,500 --> 00:02:53,355 hospital at 4am, where I had a CT scan and they couldn't see anything and they 49 00:02:53,395 --> 00:02:54,855 just told me I was constipated really. 50 00:02:55,275 --> 00:02:58,665 Sent me away with some laxatives and then a couple of weeks 51 00:02:58,665 --> 00:03:00,045 later I was back in the UK. 52 00:03:00,704 --> 00:03:05,294 So at this point when I came back to the UK and then started my PhD at 53 00:03:05,294 --> 00:03:07,994 Oxford, I still didn't have a diagnosis. 54 00:03:08,204 --> 00:03:12,375 During the time between finishing my masters and starting the PhD I'd switched 55 00:03:12,405 --> 00:03:17,285 to the progesterone only pill which hadn't changed any of the symptoms, 56 00:03:17,564 --> 00:03:23,240 which was mostly really intense, sharp pain at the bottom right abdomen, which 57 00:03:23,240 --> 00:03:24,959 is why I thought it was appendicitis. 58 00:03:25,880 --> 00:03:29,320 But because I was getting migraines with the mixed pill, I had to change pills, 59 00:03:29,599 --> 00:03:33,799 so that was all unrelated, but there was no real improvement to anything and 60 00:03:33,800 --> 00:03:39,250 then while I was at Oxford, I decided to change to the Mirena Coil, just for 61 00:03:39,280 --> 00:03:44,250 improving periods, unrelated to the pain, because at this point I still didn't 62 00:03:44,650 --> 00:03:49,545 know that they were related and then the pain was becoming so unbearable and 63 00:03:49,555 --> 00:03:53,545 so frequent that I would be able to get into the office or into the lab maybe 64 00:03:54,185 --> 00:03:57,995 once a week on a good week and the rest of the time the pain was either too 65 00:03:57,995 --> 00:04:02,054 high or I was too chronically fatigued to even go in and do my work there. 66 00:04:02,414 --> 00:04:06,975 But thankfully, maybe not thankfully, the work I'm doing, I can do a lot of 67 00:04:06,975 --> 00:04:12,005 it from home and so I was very flexible, my supervisor was very understanding 68 00:04:12,395 --> 00:04:15,829 and so I felt like I had to do a lot of work on the good days so that I 69 00:04:15,829 --> 00:04:17,490 would make room for the bad days. 70 00:04:17,839 --> 00:04:22,630 But then eventually the pain became so unbearable and so frequent that I did 71 00:04:22,630 --> 00:04:28,929 take myself again to the GP this time at the college clinic and I don't know if 72 00:04:28,929 --> 00:04:33,440 it was the university setting and that it was affecting my work, but they took 73 00:04:33,440 --> 00:04:39,455 me quite seriously and I brought up the fact that my mother had endometriosis 74 00:04:39,495 --> 00:04:45,465 and that my cousins had endometriosis and then I was forwarded on to a gynecologist 75 00:04:45,544 --> 00:04:50,404 in Oxford who did a really great job, booked me in for surgery a year later 76 00:04:51,524 --> 00:04:57,235 and I had that surgery, laparoscopic surgery to snip it out and now six 77 00:04:57,235 --> 00:04:59,349 months on things are much more improved. 78 00:04:59,420 --> 00:05:02,390 That sounds really difficult, especially given that you're in a different country 79 00:05:02,390 --> 00:05:06,180 with an unfamiliar system and language at the time of sort of the onset of symptoms 80 00:05:06,180 --> 00:05:09,869 being really bad and so between the time period of your diagnosis and your 81 00:05:09,870 --> 00:05:13,500 surgery, were there any strategies that you used to help to manage your symptoms? 82 00:05:13,520 --> 00:05:19,260 Mostly it was flexible working, knowing my body well enough to know when a bad 83 00:05:19,260 --> 00:05:23,809 day was coming, but also having very candid discussions with the people 84 00:05:23,810 --> 00:05:30,299 in my lab and with my supervisor about expectations for myself and 85 00:05:30,370 --> 00:05:31,939 how I was going to get the work done. 86 00:05:32,020 --> 00:05:35,520 But as I said, thankfully, I'm a physical chemist or a chemical physicist, and 87 00:05:35,520 --> 00:05:37,320 so a lot of the work is just analysis. 88 00:05:37,320 --> 00:05:41,820 I don't have to be in the lab all day and I want to use the word lucky, I 89 00:05:41,820 --> 00:05:45,990 don't think it's the right word in this case, but I was lucky in the sense that 90 00:05:45,990 --> 00:05:50,250 I don't have to be in the lab all day and so I could work remotely from home. 91 00:05:50,255 --> 00:05:56,880 I wasn't bent over a table or having to skip lunches or all of that kind of stuff. 92 00:05:56,970 --> 00:06:01,895 The pain management was mostly over the counter painkillers, lots of working 93 00:06:01,895 --> 00:06:06,735 from home or working from my bed on some days, hot water bottles, CBD balm, 94 00:06:06,784 --> 00:06:11,784 Tiger Balm, but then also talking to the university counselling service who 95 00:06:11,805 --> 00:06:13,435 referred me to a mindfulness course. 96 00:06:14,015 --> 00:06:16,974 That might be for other people, but turned out to be absolutely not for me. 97 00:06:17,305 --> 00:06:21,305 Maybe it was trying to focus too much on my body and being too aware of the 98 00:06:21,305 --> 00:06:25,825 pain, but that definitely didn't help and eventually going for the surgery 99 00:06:25,825 --> 00:06:29,554 was just the best thing for me, but obviously it's different for everybody. 100 00:06:29,665 --> 00:06:32,385 And it sounds like your group was really supportive, which is great. 101 00:06:32,515 --> 00:06:34,885 Did you feel like this had an impact on your research and how 102 00:06:34,885 --> 00:06:36,025 did your supervisor respond? 103 00:06:36,035 --> 00:06:37,795 Did you have conversations with your supervisor? 104 00:06:38,765 --> 00:06:43,845 So when I started my PhD, it was during the pandemic and so I was very used to 105 00:06:43,845 --> 00:06:47,924 working from home just out of necessity anyway and then as the pandemic faded 106 00:06:47,924 --> 00:06:52,694 away, my group tried to fade back into the lab, but I was already so far into 107 00:06:52,695 --> 00:06:57,949 the PhD that actually there was not really that much that needed to be done or 108 00:06:57,949 --> 00:06:59,850 changed in terms of the way I was working. 109 00:07:00,220 --> 00:07:02,939 But it was still quite important to be able to get into the lab, to 110 00:07:02,939 --> 00:07:06,319 forge communications with the rest of the people in my lab, to help 111 00:07:06,650 --> 00:07:10,769 new students out and to finish up any extra work they needed doing. 112 00:07:10,839 --> 00:07:15,275 But I think everybody at that point in my group was very aware of my endometriosis 113 00:07:15,614 --> 00:07:18,405 and if I wasn't in, that was fine. 114 00:07:18,435 --> 00:07:20,905 When I did come in on the rare occasion, everybody was very excited 115 00:07:20,905 --> 00:07:24,125 to see me, so I don't think it was particularly productive on those days. 116 00:07:24,594 --> 00:07:28,305 But knowing that the pain was unpredictable, and that the pain days 117 00:07:28,724 --> 00:07:33,525 lead to days of fatigue as well, I would try to optimise the way I would 118 00:07:33,534 --> 00:07:37,565 work on the good days so that I could be a bit more relaxed on the bad days. 119 00:07:37,575 --> 00:07:42,974 So I do a lot of coding, there's lots of ways I can optimise that to make 120 00:07:42,974 --> 00:07:46,435 things easier for me later on, so I don't make mistakes and when I do make 121 00:07:46,435 --> 00:07:48,094 mistakes, it'll be easy to correct. 122 00:07:48,554 --> 00:07:53,554 So there's all of that, but now I'm starting a new job soon after finishing 123 00:07:53,554 --> 00:07:57,965 my PhD and that will be in the lab most days and so there is still 124 00:07:57,965 --> 00:08:00,064 quite a bit of anxiety around that. 125 00:08:00,174 --> 00:08:03,880 Haven't been used to that very much, because the whole pandemic 126 00:08:03,990 --> 00:08:05,190 and then working from home. 127 00:08:05,530 --> 00:08:10,200 So I'm not very used to working in a lab every single day, but also the 128 00:08:10,200 --> 00:08:15,179 anxiety of starting a new job and how to work around having a chronic illness 129 00:08:15,870 --> 00:08:19,179 in a new setting with new colleagues is always a little bit stressful. 130 00:08:19,530 --> 00:08:23,170 It's so good that you've had sort of that support so far and that flexibility 131 00:08:23,190 --> 00:08:27,289 in your PhD because I can't imagine just having both the physical load 132 00:08:27,300 --> 00:08:30,320 of the symptoms and managing that and then also the mental load of 133 00:08:30,430 --> 00:08:32,039 how do I talk to people about it. 134 00:08:32,080 --> 00:08:33,189 So yeah, that sounds like a lot. 135 00:08:33,239 --> 00:08:35,520 But how do you feel that you were supported by the university and do 136 00:08:35,520 --> 00:08:37,789 you think there were other ways, any ways that you could have been better 137 00:08:37,789 --> 00:08:39,139 supported by Oxford as a university? 138 00:08:39,905 --> 00:08:42,865 So obviously my supervisor was really great in this situation, 139 00:08:43,225 --> 00:08:45,255 just let me get on with things. 140 00:08:45,265 --> 00:08:48,215 If I did the work to a good enough standard that was fine, it didn't 141 00:08:48,215 --> 00:08:52,175 matter when I was doing it, but it really wasn't obvious where 142 00:08:52,204 --> 00:08:53,885 to get the necessary information. 143 00:08:53,885 --> 00:08:58,700 So knowing that I had the surgery coming up and not knowing if I was 144 00:08:58,700 --> 00:09:02,470 going to have to take time off or if things would get worse, how would 145 00:09:02,470 --> 00:09:05,510 that affect my funding for my PhD? 146 00:09:05,620 --> 00:09:10,469 And there is information somewhere about whether I would qualify for time 147 00:09:10,469 --> 00:09:14,290 off, but because I wasn't applying for time off, I just wanted to know in 148 00:09:14,290 --> 00:09:18,420 the worst case scenario, I have this surgery coming up, what do I need to do? 149 00:09:18,570 --> 00:09:23,829 It was very difficult to try and navigate the logistics of this situation 150 00:09:24,310 --> 00:09:28,720 and so I think there's definitely a room for clearer guidelines for 151 00:09:28,760 --> 00:09:33,930 people who have chronic illnesses or disabilities or even one off illnesses 152 00:09:33,969 --> 00:09:38,530 or injuries that affect their work and the time that they need to take off. 153 00:09:39,440 --> 00:09:42,910 But it would also be really good for there to be more conversations 154 00:09:42,940 --> 00:09:45,270 about chronic illness and disability within the department. 155 00:09:45,745 --> 00:09:49,325 But as someone with a chronic illness, to be part of that conversation all 156 00:09:49,325 --> 00:09:53,015 the time is a little bit exhausting and so really what should be happening 157 00:09:53,015 --> 00:09:58,105 is policy change to make things easier for everybody, not just those of us 158 00:09:58,105 --> 00:10:01,680 who want it, because I think everybody will find that once it's better for 159 00:10:01,680 --> 00:10:03,450 everybody, it's better for everybody. 160 00:10:04,004 --> 00:10:07,305 I wonder if you could talk a bit about how having the surgery was and 161 00:10:07,315 --> 00:10:10,555 how that's changed your experience since having the surgery and how 162 00:10:10,774 --> 00:10:14,195 that time off perhaps around the surgery was dealt with, for you? 163 00:10:14,670 --> 00:10:19,700 So like everything else with endometriosis, all my experiences will 164 00:10:19,700 --> 00:10:21,839 be very different to everybody else's. 165 00:10:22,149 --> 00:10:26,985 But I went into the surgery not having a formal diagnosis, but the 166 00:10:26,985 --> 00:10:29,745 surgeon had said, even if I don't have endometriosis, I'd be great for 167 00:10:29,745 --> 00:10:32,175 the study of can we diagnose it well. 168 00:10:32,525 --> 00:10:37,005 So I think that was also quite positive being in a university setting where 169 00:10:37,165 --> 00:10:40,775 even if I don't have it, they're curious to find out if I do, so 170 00:10:40,785 --> 00:10:41,495 I was in a good position there. 171 00:10:42,325 --> 00:10:47,155 The surgeons and the staff were really excellent, they didn't talk 172 00:10:47,155 --> 00:10:50,665 down to me, they validate everything and I think it's because they're 173 00:10:50,675 --> 00:10:55,204 specialists in endometriosis, which is really rare to find and the surgery 174 00:10:55,215 --> 00:11:00,150 itself, obviously, I wasn't awake for it, but once I woke up, I had a 175 00:11:00,150 --> 00:11:03,150 terrible reaction to the anaesthetic. 176 00:11:03,579 --> 00:11:06,690 Not an allergic reaction, it just made me incredibly nauseous and the first 177 00:11:06,690 --> 00:11:09,930 thing, I don't know if this is going to be too much information actually, 178 00:11:10,289 --> 00:11:16,419 I'm instantly just vomiting, dry mouth, asking for water, every time 179 00:11:16,430 --> 00:11:20,700 I took a sip of water, just vomiting everywhere until the nurses told me off 180 00:11:20,720 --> 00:11:23,960 and they're like, you cannot be asking anybody else for water and they gave 181 00:11:23,960 --> 00:11:30,205 me three different types of anti nausea sickness drugs and nothing was working. 182 00:11:30,235 --> 00:11:35,445 I was shivering, I was boiling hot, still throwing up, hadn't eaten for 24 183 00:11:35,445 --> 00:11:39,175 hours and so it was at that point I was like I'd rather just have endometriosis. 184 00:11:40,185 --> 00:11:44,004 But once that had all subsided and I woke up, I was much more hopeful. 185 00:11:44,209 --> 00:11:50,829 My stomach was painful because I had the four keyhole scars, but the pain wasn't 186 00:11:50,829 --> 00:11:55,280 anywhere near the kind of pain I had with the endometriosis, so I didn't really 187 00:11:55,280 --> 00:11:56,760 need any painkillers at that point. 188 00:11:56,819 --> 00:12:00,699 Maybe that was me being stubborn about But I stayed one night 189 00:12:00,769 --> 00:12:05,255 after the surgery and then went home to recover for two weeks. 190 00:12:05,555 --> 00:12:08,855 I think my personality type is that I just have to be working all the time, 191 00:12:08,855 --> 00:12:12,725 so I did do work from home while I was recovering from surgery, checking on 192 00:12:12,725 --> 00:12:18,185 the teams, channels, et cetera and then after the two weeks, I could move around 193 00:12:18,185 --> 00:12:20,944 a bit more, I went to a conference, I got everybody else who was at the 194 00:12:20,949 --> 00:12:22,745 conference with me to carry my suitcases. 195 00:12:22,745 --> 00:12:27,895 It was in Crete in June, so it was boiling hot at the beach, lying by the poolside. 196 00:12:27,895 --> 00:12:32,775 So it was very relaxing and then the endometriosis pain after the surgery 197 00:12:33,045 --> 00:12:37,705 didn't immediately subside, but you can't really tell the difference between is it 198 00:12:37,714 --> 00:12:42,515 endometriosis or is it because I've been cut open where the endometriosis was and 199 00:12:42,515 --> 00:12:46,735 then slowly after a couple of months I could tell the pain was becoming less 200 00:12:46,755 --> 00:12:53,055 intense and less frequent so that the days where I did have pain, there are enough 201 00:12:53,075 --> 00:12:57,775 pain free days before that to have enough energy to deal with it and now six months 202 00:12:57,805 --> 00:13:01,125 on, I can maybe get into the lab every single day of the week if I wanted to. 203 00:13:01,205 --> 00:13:03,625 There's no point because I'm writing up my thesis, but if I 204 00:13:03,625 --> 00:13:05,475 wanted to, that's really good. 205 00:13:05,815 --> 00:13:09,825 The pain is maybe a couple of times a month coinciding with like ovulation 206 00:13:09,844 --> 00:13:13,784 and the first day of a period, which I'm still not getting a full period, I 207 00:13:13,784 --> 00:13:17,985 still have the Mirena coil in, so hoping that will disappear again soon as well. 208 00:13:18,405 --> 00:13:23,254 But then if the pain carries on, the doctors have suggested maybe 209 00:13:23,295 --> 00:13:26,994 going back on the P Pill, which I'm hoping we won't have to do because 210 00:13:27,045 --> 00:13:29,944 the P Pill made me a very sad girl. 211 00:13:30,405 --> 00:13:33,915 So you mentioned that when you were taking time off after the surgery to 212 00:13:33,915 --> 00:13:36,495 recover, you said that, you know, it's your personality, you were still doing 213 00:13:36,495 --> 00:13:39,894 work, but do you feel like that was just you or did you feel pressure from the 214 00:13:39,914 --> 00:13:42,935 fact that it's Oxford or doing a PhD and also the fact that the uncertainty 215 00:13:42,935 --> 00:13:46,905 around not knowing what was going on with taking time off and all of that, if 216 00:13:46,935 --> 00:13:48,074 you're still going to have your funding? 217 00:13:48,194 --> 00:13:50,175 Yeah, there was definitely some of that. 218 00:13:50,365 --> 00:13:55,774 I didn't know if I would be able to extend my funding if I needed to at 219 00:13:55,774 --> 00:13:59,855 the end of the PhD, if I needed more time and so there was definitely a 220 00:13:59,855 --> 00:14:04,060 feeling of, I need to finish my work just in case I need to take more time 221 00:14:04,060 --> 00:14:08,920 off later and because I was writing papers and collaborating, you don't 222 00:14:08,920 --> 00:14:12,690 want to tell every single person in your collaboration that you've had surgery. 223 00:14:12,970 --> 00:14:16,120 Maybe I should, maybe this should all be changed, but there is some kind 224 00:14:16,120 --> 00:14:19,539 of degree of professionalism where you say, I'm taking time off, but you 225 00:14:19,539 --> 00:14:22,430 want to still deliver for the people that maybe aren't in your group, 226 00:14:22,460 --> 00:14:25,910 but you're working with and that's maybe a subconscious thing of my own. 227 00:14:26,250 --> 00:14:29,819 Maybe that's a whole problem by in itself, but I think because the work I could 228 00:14:29,820 --> 00:14:35,165 do from home, writing papers or writing code, it didn't feel physically laboring 229 00:14:35,265 --> 00:14:40,395 and so I decided to do it for better, for worse, keep myself occupied, but there 230 00:14:40,395 --> 00:14:41,925 shouldn't have had to be a need for it. 231 00:14:42,055 --> 00:14:45,380 You know, it's so tough that, it's not just endometriosis, it's a lot 232 00:14:45,380 --> 00:14:48,990 of different disabilities and chronic cancers and all of that you don't have 233 00:14:49,079 --> 00:14:53,039 sort of a precedent for knowing what kind of, how much time off you can take 234 00:14:53,039 --> 00:14:58,649 and it shouldn't fall on the people who are affected to have to decide how much 235 00:14:58,899 --> 00:15:02,170 time off they need and all of that and how much they can afford to take and... 236 00:15:02,800 --> 00:15:05,370 Also, I think a lot of people have said to me things like, Oh, it's completely 237 00:15:05,370 --> 00:15:09,450 my fault, I just, I decided to keep going in the lab when I wasn't able 238 00:15:09,450 --> 00:15:13,370 to and I think you're right, I think we actually can't even imagine that it 239 00:15:13,500 --> 00:15:17,760 could be a cultural thing or a systemic thing that we feel like we can't take 240 00:15:17,760 --> 00:15:21,530 a day off when we're in pain or when we physically don't feel well enough 241 00:15:21,530 --> 00:15:23,390 to be in a lab or in a work setting. 242 00:15:23,390 --> 00:15:26,520 But we actually, yeah, we still think it's our fault in some ways that 243 00:15:26,530 --> 00:15:27,740 we could have made that decision. 244 00:15:27,740 --> 00:15:30,210 Whereas perhaps it might be something bigger than what we're considering. 245 00:15:30,554 --> 00:15:33,274 It's maybe also the type of work you're doing as well. 246 00:15:33,275 --> 00:15:38,175 I think when you're used to doing heavy manual labor in a lab or working long 247 00:15:38,175 --> 00:15:41,555 days in lab and then when you're off sick and the only work available to you 248 00:15:41,555 --> 00:15:44,905 is just writing or reading, you kind of feel like, well, why shouldn't I? 249 00:15:45,405 --> 00:15:51,465 Actually, to have a social change to being able to take that emotional time off 250 00:15:51,465 --> 00:15:53,435 as well when you need to be recovering. 251 00:15:53,475 --> 00:15:56,415 That is such a good point, the sort of emotional recovery side of things. 252 00:15:56,595 --> 00:16:00,244 Was that something that you felt you were able to create space for? 253 00:16:00,244 --> 00:16:03,495 Is that something you feel like you're only now finding time for now that you've 254 00:16:03,545 --> 00:16:05,315 got over some of the physical hurdles? 255 00:16:05,335 --> 00:16:10,415 Yeah, during the pain, pre-surgery, it was emotionally taxing. 256 00:16:10,504 --> 00:16:15,155 I always felt very flaky making lots of plans and then unpredictably being in 257 00:16:15,185 --> 00:16:20,355 pain and having to cancel and there's an emotional aspect to that, feeling a 258 00:16:20,355 --> 00:16:25,149 little bit like a weak link in the lab, not being there every day to help with 259 00:16:25,240 --> 00:16:30,339 things in the lab and feeling like I have to overcompensate with the work I do with 260 00:16:31,110 --> 00:16:35,270 coding or writing papers, or helping out with other things with other lab mates. 261 00:16:35,380 --> 00:16:41,769 But yeah, the anxiety and depression that comes a little bit with being isolated, 262 00:16:41,779 --> 00:16:46,319 being in pain all the time, being chronically fatigued, not feeling like 263 00:16:46,319 --> 00:16:51,109 you can have candid conversations with everybody, having a bad day but not being 264 00:16:51,109 --> 00:16:54,970 able to say to somebody you're having a bad day when they ask, oh, how are you? 265 00:16:55,330 --> 00:16:59,360 That was always quite hard and knowing that the people who care about you, 266 00:17:00,000 --> 00:17:01,730 they would care enough to understand. 267 00:17:02,700 --> 00:17:08,345 When it's every day chronically over a few years, you also don't want to emotionally 268 00:17:08,345 --> 00:17:11,825 labour the people that you care about, so there's always a bit of disconnect there. 269 00:17:12,545 --> 00:17:15,125 So that's why I went to see the university counselling for that, I just 270 00:17:15,125 --> 00:17:19,494 need somebody whose job it is to listen to me vent about having a hard time. 271 00:17:19,885 --> 00:17:25,244 But then after the surgery and things starting to improve, being less tired 272 00:17:25,244 --> 00:17:28,835 all the time really helps and so I guess this is why it's important when you are 273 00:17:28,835 --> 00:17:34,550 chronically sick or anything else, to take that emotional well being time as well. 274 00:17:35,090 --> 00:17:39,180 Things always are so much better when you've had a good rest or when 275 00:17:39,180 --> 00:17:42,600 you're not tired or when you're not in pain, so to make that space 276 00:17:42,609 --> 00:17:43,940 for yourself is really important. 277 00:17:44,190 --> 00:17:46,730 You talked about the sort of social isolation side of it. 278 00:17:47,050 --> 00:17:49,610 Did that change a bit during the pandemic? 279 00:17:49,730 --> 00:17:52,900 Some people with chronic illnesses and things, when everything moved online, 280 00:17:52,900 --> 00:17:55,800 said that they felt much more involved because there was much less of that 281 00:17:55,800 --> 00:17:57,779 physical design barrier in the world. 282 00:17:57,980 --> 00:17:59,860 Was that something that you experienced or? 283 00:17:59,910 --> 00:18:03,130 I think this is going to be a combination of lots of 284 00:18:03,170 --> 00:18:05,759 individual and worldwide factors. 285 00:18:05,760 --> 00:18:10,215 So while I was in Japan, obviously that was a very isolating experience, I didn't 286 00:18:10,215 --> 00:18:16,525 speak Japanese and my Japanese lab mates didn't speak very much English, so at 287 00:18:16,535 --> 00:18:20,245 that point I was very used to the social isolation and just wanting to come home 288 00:18:21,234 --> 00:18:27,470 and then in the pandemic, being on the P Pill at that point, I was just a sad girl. 289 00:18:27,580 --> 00:18:31,150 Every day at four o'clock we called it the crying hour and I think that was 290 00:18:31,150 --> 00:18:36,180 just a combination of pandemic starting, not being at home, the shock of your 291 00:18:36,180 --> 00:18:41,169 system coming out from Japan back to the UK, it was very overwhelming. 292 00:18:41,230 --> 00:18:45,310 But then everybody else being put in the pandemic kind of levels 293 00:18:45,310 --> 00:18:46,500 the playing field a little bit. 294 00:18:46,890 --> 00:18:50,300 I know lots of people had a terrible time, but as somebody who is just very 295 00:18:50,300 --> 00:18:54,669 used to that or forced into a social isolation, it was a little bit nice 296 00:18:54,680 --> 00:18:59,885 for me in a selfish way, that people were organising video calls or playing 297 00:18:59,885 --> 00:19:04,315 video games online, slowly your hobbies become everybody else's hobbies. 298 00:19:04,345 --> 00:19:07,335 There's lots of things for you to talk about, everybody's playing Animal Crossing 299 00:19:08,435 --> 00:19:13,425 and then moving out of the pandemic back into the lab and seeing people really 300 00:19:13,485 --> 00:19:18,575 enjoyed working flexibly or remotely and some of that still seeping back into 301 00:19:18,785 --> 00:19:24,004 work in the lab has really helped me with endometriosis dealing with working 302 00:19:24,115 --> 00:19:28,984 from home and flexibly, people are much more aware of how that can help people. 303 00:19:29,220 --> 00:19:32,880 So you mentioned earlier that there's a history of endometriosis in your family 304 00:19:33,149 --> 00:19:36,780 and I was just wondering if that helped in a way to know other people who've 305 00:19:36,780 --> 00:19:40,070 struggled with this and if you've reached out at all to anything like, I don't know, 306 00:19:40,080 --> 00:19:43,460 support groups if that's there of other people who struggle with endometriosis and 307 00:19:43,810 --> 00:19:46,200 if that's been helpful to you or, yeah. 308 00:19:46,225 --> 00:19:52,095 Yeah, so the diagnosis time typically is like eight years and there's a huge 309 00:19:52,115 --> 00:19:57,874 Instagram community of people sharing their stories of endometriosis and some 310 00:19:58,024 --> 00:20:03,544 stories of people waiting 15, 20 years to be diagnosed and it's really difficult 311 00:20:03,545 --> 00:20:08,745 because the symptoms cross over with so many other diseases, but one in 10 312 00:20:08,785 --> 00:20:12,860 people with a uterus have endometriosis, so it's quite shocking that people 313 00:20:12,860 --> 00:20:15,590 have to go so long without a diagnosis. 314 00:20:15,830 --> 00:20:21,039 But having family that has diagnoses and having somebody related to you that 315 00:20:21,060 --> 00:20:24,880 has endometriosis, I think something like triples your probability of 316 00:20:24,880 --> 00:20:29,870 having it and I don't have the citation for that, so don't quote me on it. 317 00:20:29,990 --> 00:20:34,870 But having a family brings it to your forefront that maybe, I have it too 318 00:20:34,910 --> 00:20:40,100 and that the time between the symptoms starting and the diagnosis was two to 319 00:20:40,100 --> 00:20:44,129 three years instead of eight to twenty years, so that really helped and then 320 00:20:44,130 --> 00:20:50,090 once you have a diagnosis, you can get on Instagram, Google and see your 321 00:20:50,230 --> 00:20:53,915 experiences and not, you know, so isolated from everybody else as everyone 322 00:20:53,925 --> 00:20:58,125 has their own unique experience, but actually there's so much shared medical 323 00:20:58,125 --> 00:21:04,145 trauma, so much shared symptoms, so much shared emotional labor with it. 324 00:21:04,915 --> 00:21:07,985 You also talked about your experience with getting diagnosed being actually 325 00:21:07,985 --> 00:21:13,135 quite a positive one relatively because the doctors were doing trials and 326 00:21:13,165 --> 00:21:15,815 they were experts in endometriosis so they were genuinely interested. 327 00:21:16,234 --> 00:21:20,405 So sort of with that relative to other people's very difficult experiences with 328 00:21:20,544 --> 00:21:23,925 pain being dismissed especially women's pain is very often dismissed, do you 329 00:21:23,935 --> 00:21:28,715 have a recommendation or something like that you could give to clinicians who are 330 00:21:28,715 --> 00:21:30,975 working on this and who've got patients? 331 00:21:31,034 --> 00:21:35,984 I think trust that the patient knows their body well. 332 00:21:36,335 --> 00:21:41,785 I think a lot of stories of other people who've struggled to get a diagnosis is 333 00:21:41,785 --> 00:21:45,605 that they're not believed, but actually if you're coming to somebody frequently 334 00:21:45,605 --> 00:21:49,435 with a problem and you can't find the solution, it's very likely that the 335 00:21:49,435 --> 00:21:53,324 patient has tried to figure it out themselves and so I think believing 336 00:21:53,425 --> 00:21:59,665 the level of pain is very important, but also to be open to new ideas. 337 00:22:00,495 --> 00:22:04,935 I think the progress in diagnosing endometriosis has been very slow. 338 00:22:04,935 --> 00:22:10,315 I think we can all agree that diagnosing women's health problems in general is 339 00:22:10,355 --> 00:22:15,334 a whole different kind of work, well same can of worms really, but a big one 340 00:22:15,725 --> 00:22:21,915 and there just needs to be a shift in the whole outlook, ah, that's a huge 341 00:22:21,995 --> 00:22:25,914 systemic issue that you don't really know how to diagnose that myself. 342 00:22:26,224 --> 00:22:30,784 Yeah, being open to understanding, being a bit more empathetic to 343 00:22:31,145 --> 00:22:33,505 patients and their experiences. 344 00:22:33,975 --> 00:22:37,765 I mean there's a lot of information on the internet, not all of it true, 345 00:22:38,205 --> 00:22:40,995 but knowing that your patient is probably taking the time to try and 346 00:22:40,995 --> 00:22:44,084 understand it themselves and to take on board what they already know. 347 00:22:44,595 --> 00:22:48,614 Also, it would be really helpful if, for especially students, when you move away 348 00:22:49,044 --> 00:22:53,195 into a different place, for that medical information to follow you properly. 349 00:22:53,615 --> 00:22:56,695 Moving to a different GP and having to go through everything again, I 350 00:22:56,705 --> 00:23:01,340 think that's important for the health providers to understand, especially 351 00:23:01,350 --> 00:23:05,210 trying to get a diagnosis as a student that actually you might need to try 352 00:23:05,210 --> 00:23:07,210 and get the whole picture again. 353 00:23:08,175 --> 00:23:11,235 That made me think actually of something that comes up a lot in my conversations 354 00:23:11,235 --> 00:23:14,865 with my friends about just being an undergraduate in Oxford and a lot of 355 00:23:14,865 --> 00:23:18,075 the time if you have any kind of, like a disability support plan or anything 356 00:23:18,075 --> 00:23:20,835 like that, anytime you need to put in a request with the university, like 357 00:23:21,144 --> 00:23:26,245 requesting to stay over the VAC period in college, you often just have to put in 358 00:23:26,275 --> 00:23:30,105 basically a request with welfare and the accommodation team and you have to list 359 00:23:30,585 --> 00:23:34,245 every single reason why all of the support that you need all of like the reason why 360 00:23:34,245 --> 00:23:37,405 you want to stay for example and all of that and it's just it feels absolutely 361 00:23:37,405 --> 00:23:40,724 exhausting because you shouldn't need to do that if you've got this diagnosis 362 00:23:40,785 --> 00:23:43,964 if you've got a support plan in place, they should know that and you shouldn't 363 00:23:43,995 --> 00:23:46,985 have to be justifying it all of the time and it's like what you were saying with 364 00:23:47,405 --> 00:23:51,625 when you go to a new GP and you have to go through everything again even though 365 00:23:51,655 --> 00:23:54,885 that information should already be there and yeah you shouldn't need to fight 366 00:23:54,885 --> 00:23:58,455 for it all of the time and fight to be believed and justified in your needs. 367 00:23:58,495 --> 00:24:02,450 Yeah and I think in terms of summarising a bit what we've talked about, that idea 368 00:24:02,450 --> 00:24:08,380 of moving from the onus being on students or PhD students, you know, staff with 369 00:24:08,410 --> 00:24:13,000 disabilities to self advocate and fight for every bit of time off, every bit of 370 00:24:13,360 --> 00:24:18,430 accommodation that they need, to moving to a model where that is accommodated 371 00:24:18,430 --> 00:24:22,500 for and there are options put in place and policy changes that are implemented, 372 00:24:22,510 --> 00:24:26,460 so that people that need to take time off aren't feeling that they have to be 373 00:24:26,460 --> 00:24:32,299 working from their sick bed with their hot water bottles and a safety net from 374 00:24:32,300 --> 00:24:36,670 the department, in terms of resources and clarity about funding as you discussed for 375 00:24:36,670 --> 00:24:42,780 your PhD and having perhaps a disability, or welfare, or an EDI officer within 376 00:24:42,780 --> 00:24:45,119 a department rather than in Oxford. 377 00:24:45,120 --> 00:24:47,819 This system is usually within colleges that there's support for 378 00:24:47,819 --> 00:24:52,110 certain individuals or for staff or especially for postgraduate students 379 00:24:52,350 --> 00:24:55,920 that support through college can often not be as strong as it should be. 380 00:24:56,190 --> 00:25:00,130 So having departmental support as well would catch specialisms especially 381 00:25:00,130 --> 00:25:03,315 within chemistry that, if you go to someone in college who has an 382 00:25:03,315 --> 00:25:06,435 English Literature degree, you might not understand the physicalities of 383 00:25:06,435 --> 00:25:07,805 being in labs and things like that. 384 00:25:08,345 --> 00:25:12,305 Well, thank you so much for listening and especially huge thank you to Tiff 385 00:25:12,314 --> 00:25:14,105 for being such a fantastic guest. 386 00:25:14,444 --> 00:25:17,365 We've learned so much from you and I'm sure our wonderful listeners have 387 00:25:18,015 --> 00:25:20,995 So we hope you really enjoyed our discussion around endometriosis, and 388 00:25:20,995 --> 00:25:23,665 if you're interested in learning more about today's topic, then please visit 389 00:25:23,695 --> 00:25:28,234 endometriosis-uk.org, and to find out more about the podcast, you can find us at 390 00:25:28,234 --> 00:25:33,835 periodicallyoxchem.wixsite.com or follow us on social media @periodically_ox and 391 00:25:33,835 --> 00:25:35,754 tune in next week for our next episode. 392 00:25:35,925 --> 00:25:39,395 Again, we'd like to thank the RSC Inclusion and Diversity Fund, the 393 00:25:39,475 --> 00:25:42,611 University of Oxford Chemistry Department and the EPSRC funded 394 00:25:42,611 --> 00:25:46,234 OxICFM CDT for supporting the podcast.