Stigma and Support

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 the RSC Inclusion and Diversity Fund, the University of Oxford Chemistry Department, and the EPSRC funded OxICFM CDT for supporting the podcast.

Hi, I'm Felicity. I'm Josie. And we are both third year chemists at the University of Oxford.

Today, we are very excited to be joined by Liv and Lauren from the incredible society, SASHA, based at the University of Leeds. So I will let you two introduce yourselves and tell us a bit more about the amazing work that SASHA does. I'm Liv and I'm the president for SASHA Society. Hi, I'm Lauren and I'm the Welfare Officer for SASHA Society. SASHA Society, or Students Against Sexual Harassment and Assault, campaigns at the University of Leeds for change on campus.

I study international relations, which intersects really well with this. SASHA Society also advocates for the welfare of students. I study fine art and I'm really interested in creative activism and how we can use art for therapeutic means to support students. Today we are going to be discussing Liv and Lauren's journey with menstrual health, specifically conditions like endometriosis and PCOS. Just as a warning, we will be discussing sexual assault and body image.

So just to start with, could you guys both talk us through your journeys with menstrual health? So I didn't get my period until I turned 16, which is quite late and then they were irregular, so maybe every three to four months at the time I expressed these concerns with the doctor and I felt quite invalidated really. All of the reasoning suggested by them was that I was underweight and I was told it was about eating and stress.

So I went on to the pill when I was 17 and I stayed on that for two years. I decided to come off the pill at university as I hadn't experienced a regular menstruation cycle and through this, I experienced a lot of pain, but I wasn't bleeding when I was experiencing that pain. I had really painful cramping, I couldn't walk, I was fainting and throwing up. So that happened while I was at work and also on public transport.

There was a lot of shame and stigma around saying that the reason that I felt ill and that this was happening was because I was on my period. So I did struggle with that quite a lot. I felt this pain to a heightened degree when I took the morning after pill. The doctors said they thought it was either pregnancy or PCOS, which is Polycystic Ovary Syndrome. So once I found out that I wasn't pregnant, I started the diagnosis process.

This involved blood tests, STI tests, internal and external vaginal scan. That's a process that I think a lot of people have to go through and you have to go through this for this diagnosis and it's quite invasive and an uncomfortable experience and there should definitely be a lot more welfare implemented through this. After this I was diagnosed with PCOS. I didn't have any cysts but I had other criteria. I had irregular periods.

I also had irregular hormones and dysmenorrhea which is pain while menstruating. I was told I must be on the pill and the condition meant that I had high risk of endometrial cancer. I also knew people going through the same thing that had said they'd never been directed to do this. So there was a lot of uncertainty and anxiety around that.

I asked for the option to stop taking the pill and then at this point I was told I was overweight, so the opposite, which is just, yeah, quite difficult and to emphasise here, I am a weight that I'm comfortable with and this suggestion can be extremely triggering for a lot of people, so there's quite a lack of consideration of mental health.

I decided to stop taking the pill without guidance and I experienced pain as prior, then after three months, my periods became regular and I came to the conclusion I thought I'd been misdiagnosed as I no longer had the criteria. However, I don't want to return to the doctors at the minute because of the bad experience with them. One in ten women have PCOS and it's as common as diabetes. However, most people who don't menstruate don't know what it is.

Through this process, I've realized that talking about periods breaks the stigma around menstruation and is validating for yourself and for other people. Thank you so much for sharing your experience and I'm really sorry that you haven't got that much clarity with your diagnosis and it is really frustrating that it takes so long for people to get correctly diagnosed. Liv, what has been your experience with menstrual health? So I started my period at 11, which was earlier than most of my friends.

It was really heavy and it caused hormonal side effects and really bad acne for a while. So I was put on sort of the classic medication for that and then at 13 or 14 I think I went on the pill. But that, I think like many other women, caused really horrible mental health symptoms and also a gain in weight. So then I went off it for a bit, but obviously because of the acne journey, decided to go back on it.

So at 16 I went on it again because of my periods and my acne, but I stopped during the pandemic because of a lack of access to the pill and then in my first year at uni, I realized that my pain was not normal and my anxiety was at its worst because the pandemic was sort of the most comfortable I'd ever felt in terms of just being able to manage the pain. I mean, I was able to just be at home, you know, I didn't have to go out and deal with all the difficulty of having a heavy period.

So then I tried three different types of pill and I refused to go back. But I worked up the courage to go to the Leeds doctors and I was dismissed as a student who needed to be healthier and at the time I was doing everything recommended for a healthy lifestyle just to try and fix myself, I guess. So I ended up going private because I was fortunate enough to do so. So I ended up getting a diagnosis through that.

But I had to be really assertive and I found that there were massive boundaries for those who are anxious or neurodivergent. I think that is really the biggest test for a lot of people. So then I went through lots of physical tests like blood tests, things like that, and again pregnancy tests similar to Lauren. But there was no clear cure, there was no clear outcome, there was no clear solution to my pain.

My symptoms included brain fog, pain elsewhere in my body, dizziness, dehydration, chest pain, fatigue, having a longer or a regular cycle, depression, like I said, lots of mental health symptoms and headaches and migraines. I ended up going to A&E twice, which I think the disease, like, kind of wreaks havoc on my body, and I still say this, I think no one believed me at the time and even though I have people believing me now, I still have to live with it alone.

So I re-registered at my home GP because I thought my family name might help me get taken more seriously. But I was just put on the pill again, even though I didn't want to and then I still had lots of symptoms and issues, But I found lots of holistic methods that I think worked better and just being able to take one or two days off a month with my uni schedule was more manageable despite sort of the inconvenience of missing out on lessons.

I had lots of blood tests and scans that I asked for because of my dizzy spells and my pain outside of menstruating and I was told by the technician that you can't rely on picking up endometriosis on an ultrasound because it often presents differently now. So the disease has sort of evolved so then last year I was given three options, the pill, the marina coil, which is the hormonal coil as opposed to the copper coil, or surgery.

But the latter I would have to fight for and it was not recommended for someone of my age who one day might want to have children. So now I kind of just have to live with it because I'm not happy with those choices. I have a very jam packed schedule as a third year, but I've kind of made it by so far just by taking a few days off a month and getting more involved in uni work like my work with SASHA.

But yeah, I think this should be treated as a chronic illness and it's really not seen as that, which is unfortunate. Thank you both so much for sharing. Unfortunately, I think that struggle to have your pain taken seriously is something that I think a lot of people will be able to relate to. So Liv, you mentioned that you received a diagnosis for endometriosis, which now in the UK takes an average of 6.6 years to get, which is a long time.

So how did it feel to find out that it was endometriosis? And Lauren, how does it feel to be unsure about what your condition is? I think it was underwhelming to have fought so hard and gone through all that effort just to be told, yeah, you have it, but there's not actually much we can do to help. So essentially I was just told to live with it. I think it does help to feel validated in terms of being able to talk about it with a diagnosis like any other condition.

But at the same time, it's kind of like you know, knowing you have anxiety versus it being confirmed by a doctor and it doesn't always make much difference to the issue itself. I think I feel quite confused because I'm unsure whether I might have endometriosis and not PCOS and I'm just putting off going back to the doctors because of my experience with them and not wanting to discuss this misdiagnosis.

I feel a lot better in a way because my physical health feels better, so that's kind of reflected my anxiety about it all. But it does feel like I've had to sort of navigate this by myself and make my own decisions without a sufficient level of medical support or advice. I also feel that the suggestion is often that the pain is due to personal decisions and lifestyle choices.

For example, weight, stress, yeah, they're the main ones that I've been suggested as the reason for my pain and it feels like I've been blamed and really something that I should be able to control when really it isn't.

Yeah, because both of you mentioned that you got put on the pill, which is quite, I think, a common thing for doctors to do for conditions like this, and you both have touched on it a little bit, but the pill is something we explored in Series One, so it'll be interesting to hear a bit more about your experiences on it and why you both decided that you didn't want to continue. I was put on it basically before I'd ever had a regular period.

So I was very unhappy about the fact that I'd never had that regular period and so that's the main reason I wanted to come off it because I wanted to experience that regular menstrual cycle to know if I could. I was worried about infertility and what it meant that I wasn't menstruating because I didn't believe the doctors that it was just down to weight and stress that they suggested. There was also a lot of emotional side effects. I had low libido and I felt differently about my body.

I don't think it necessarily changed my body physically, personally, but I felt different about it and it was just frustrating that always the immediate response when I went to the doctors was, Oh, just the pill without a second thought, really. Yeah, I think for me as well as that, like, it's just hard to remember to take it.

It doesn't fit in with most people's normal life and there's lots of boundaries and it ultimately just, it made my mental health so bad that I would just rather not because I think I couldn't cope with the side effects when it ultimately did nothing to help my physical pain anyway. I just think it was not, it's not a worthy cure for endometriosis or PCOS.

It's such a shame that you felt like you haven't had that medical support, but I was wondering, have you told your university about your diagnosis and have they offered you any support? I haven't personally told anyone at university other than just friends. I haven't told any professors. I haven't told the university body itself and I think, like I said, it's a fact of life that just a few days a month, I'll be in bed, I'll be bed bound and I won't be able to go to my lessons.

There are probably some lecturers who'd be more understanding of that, but I think in terms of welfare, it's quite easy to hide away at university and just sort of bedrot. It's easy to, I think it's reflective of a lot of universities in that sense, but I think despite knowing support services do exist that probably would be helpful, I wouldn't feel that confident in reaching out to them just because I think my experience with the GP, I don't feel that I'd receive effective support.

Yeah, with that idea that it's easy to bedrot as well, I don't think there's really very much clear signposting about where you'd go to access that support. They do have some access to free sanitary products, but it should be way more accessible and there isn't a society like yours, at the University of Leeds, which there should be. So anyone from Uni of Leeds listening should start one.

Yeah and I feel like I've just never reached out to anyone to discuss at the university, how it has impacted my education. The honest truth is that it does feel quite embarrassing and it really shouldn't, but it's, we need to just keep having conversations like these to break that societal shame and so we can talk about it and we feel like it's a valid reason to be ill and to be sick because it is.

Do you feel that the stigma surrounding your conditions and periods in general have affected you in any way? Yeah, I think it's definitely affected me a lot, actually.

When I was diagnosed, I didn't really understand what PCOS, Polycystic Ovary Syndrome, a lot of even friends and family who menstruated didn't know what it was and I was asked whether I wanted children and although I thought maybe I did, I was 19, you know, I didn't want to be thinking about that then, it was very anxiety provoking and I felt sad, even just at the idea that this element of choice had been taken away and I didn't even know whether it had.

I was also told that I couldn't do fertility tests and I wasn't told whether this meant that I was infertile, so I just felt very in the dark about it all. A lot of my shame also stemmed from this and kept me from talking about it because it felt very personal and I didn't really want to tell people that I had this condition when I didn't even know much about it myself.

I definitely didn't feel defined by the idea of infertility, but the societal perceptions of womanhood definitely influenced that humiliation I felt and then that not communicating about it, which made it worse. I then only found out after the diagnosis that PCOS did not mean that it was most likely I wouldn't be able to have children, but I had to find that all out myself and even then, the research into it, it just doesn't feel very definitive.

I feel very fortunate now that I'm ovulating regularly, so it's not a concern as much. But I think through this whole process, I've just learned that if there was better education in the first place, I would never have had experienced such great anxiety about that and thinking that was a great concern.

I feel grateful that I'm no longer experiencing this anxiety to that level, however I feel a lot of anger actually at the doctors, at the system, at the lack of medical research into menstruation, as well as the lack of emotional support. It's also upsetting because I know that this experience is not rare and many menstruating people have had similar stories.

I have also had very heavy and intense periods so it feels through that it's just better off hiding yourself away for the risk of the embarrassment of leaking and people seeing. I also feel quite anxious about period sex because when I was having very long and heavy periods, being on your period is seen as quite dirty by people who don't menstruate and then that perception can be taken on by people who do menstruate too.

I think in secondary school I was very ashamed and no one really talked about it and that was kind of the main reason why I was ashamed because it was very secretive even amongst my friends.

But whereas now at uni I've been forced almost not to be embarrassed because inevitably having like endometriosis, having heavy periods anyway, you're going to leak, like that is just a fact and in the gym, at uni, like hanging out with friends, periods can be so unpredictable and so heavy sometimes and so the shame really was about the period rather than the experience of having endometriosis and like Lauren, I think I had a lot of anger towards the system and the lack of

research that there is on these diseases. But I think joining societies, especially SASHA, has been really beneficial to my own discourse surrounding menstruation and obviously being on this podcast with you guys and being in just supportive communities that take these things seriously and they believe that it's not an excuse because the pain is real and so I'm finally not ashamed to talk about it. So Liv, you mentioned how the pain of your periods often gets in the way of your everyday life.

Do you feel that because of this, or for other reasons, endometriosis has had an impact on your relationship with your body? Yeah, initially I had major resentment for my body and the pain that I was in. I wondered why I couldn't be normal and especially in first year where I was hiding away a lot, I didn't get to have the university experience that a lot of students want to have, especially in first year.

In adulthood, it's impacted my routine, my training at the gym, which is key for mental health, like that really helps my overall health and well being and then sometimes it also just prevents me from getting out, getting sunlight, getting fresh air and interacting with people, going to my studies, like I've said, which obviously hurts long term, it's like a kind of never ending cycle, even when I'm not on my period, I'm having pain during my cycle.

So it's all very difficult to balance and I think in recent years it's, though I don't have shame about my periods, it's impacted my self esteem in terms of weight gain, mental health and rather than the stigma and the shame about the condition. I feel shame about the impact that's had on me as an individual and the side effects that people don't know are related to that.

But I think since I've realized how many people actually live with this pain, I sort of feel a sense of community and comfort from that. Thank you both so much for sharing these experiences. I'm sure so many other people can relate and these conversations are so important.

What would you like to see in the future for people dealing with these conditions?

Part of what we do at SASHA is aim to educate as early as possible in open conversation, to raise awareness and prevent instances happening through building supported communities that will campaign against rape culture and I think this model is important in any issue it's important in a supportive welfare context and for example what Periodically does in distributing information about the conditions and detailing real experiences, I think that resonates with

a lot of people and it's also useful in terms of campaigning for a cure or just for prevention and alleviation of symptoms for a lot of women so that we can have some semblance of peace in our lives again would be really nice. Nevertheless, I hope that people will listen to this and if they do resonate that they just don't feel so alone, like I did. It would have helped me a lot to build a community earlier on and to also absorb more facts about these conditions. Yeah, I agree.

I think there should be so much more welfare as well implemented through the process of diagnosis of PCOS and endometriosis. For example, the internal vaginal scan is something which can be extremely triggering and there should be a more trauma informed approach to these medical procedures. I also think that we need to break the stigma, you know, there's so much awkwardness around it. This reflects the work we do with SASHA Society.

We're just trying to break the stigma about these issues which are not discussed. I say to everyone now, like, I'm on my period just because I'm trying to break that kind of lack of talking about it and not everybody has to do that, but I'm just kind of like over it now, tell them that's why I'm feeling ill and then that's on a personal level, but on a political level, I think there needs to be much more medical research.

There's a shocking lack of it because it's a problem dealing with menstruation.

So only 50% ish of people have these issues and I think with this increased awareness and understanding, there will be more support for individuals on a personal level with their struggle with these conditions, for example, endometriosis and PCOS and there will be a much greater societal understanding of what these conditions are, which will mean that experience such as pain is no longer invalidated and we together can then break that societal shame around menstruation.

Thank you so much, Liv and Lauren, for coming down to talk to us today. There's evidently a lot of work to be done in society towards helping those who live with these conditions, both with finding an effective treatment to alleviate pain, but also a shift in how society views the severity of these conditions.

I think what you guys were saying about building a community is so important, so hopefully this episode is a step in the right direction to help validate people's experiences and let them know that they're not alone. Thank you so much for listening. In particular, a huge thank you to Liv and Lauren for being such fantastic guests. We have learnt so much from you, and I'm sure our wonderful listeners have too. We hope you've enjoyed our discussion around PCOS and endometriosis.

If you're interested in learning more about SASHA's work, then visit their Instagram @SASHA_UOL and to find out more about the podcast you can find us at www.periodicallyoxchem.wixsite.com or follow us on social media @periodically_ox. 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.