What can we gain from breaking the taboo over periods?
Molly: Miss Jensen, when does menstruation start?
Miss Jensen: Well, some girls start when theyâ€™re 10 years old, and some when theyâ€™re 16 or 17 or anywhere in between, but the average age â€¦Molly Grows Up, 1953 educational film
Caroline Criado Perez, narrating: Do you remember your first period? I have to admit, I donâ€™t actually remember mine. But then again, my first period didnâ€™t completely upend my life.
Dr NoĂ©mie Elhadad: Yes. I remember it very well. Iâ€™m Jewish and Iâ€™m in an observant family, and it was a day of Yom Kippur, which is a day of fest, and we spent the day in a synagogue praying.
Caroline, narrating: Dr. NoĂ©mie Elhadad was 13 years old.
NoĂ©mie: And I started walking towards the synagogue, and I felt a gush of blood, and went back immediately home because I couldnâ€™t walk anymore. I was literally hunched over in pain.
Caroline, narrating: She had just got her first period.
NoĂ©mie: It was a night and day kind of difference. I went from being an energetic, happy child to someone who was extremely tired, energyless and in a lot of pain. My teachers noticed it. They noticed that I was very white and pale, and I started missing three to four days pretty much every month because I couldnâ€™t get out of my bed.
Caroline, narrating: For any of you thinking that this is an unusual reaction to getting your period, you are right. This is not what a normal period feels like. But NoĂ©mie wasnâ€™t having a normal period because NoĂ©mie has endometriosis.Â
Endometriosis is a condition where uterine tissue grows outside of the uterus and sticks to other internal organs, creating painful lesions. It often causes heavy periods and extreme pelvic pain. And if left untreated, it can cause infertility. And while NoĂ©mieâ€™s experience with her period is not what you might describe as normal, as in this is not what a period should feel like, itâ€™s also not that uncommon because endometriosis is estimated to affect 1 in 10 women.
Brittnee: I can remember when I was doing one of my A-levels that I had to leave the exam because I was in so much pain.
Caroline, narrating: When we started working on this episode, we asked listeners to share their experiences with endometriosis and loads of you got in touch with us.
Brittnee: Even then, I didnâ€™t go to the doctor. It didnâ€™t occur to me that it wasnâ€™t normal.
Alice: And I was told that nothing was wrong with me. It was all in my head. â€śMaybe I had IBS,â€ť even though that didnâ€™t align with the symptoms.
I kept getting told that I was either pregnant or had an STI. And I just was very frustrated because neither of those things were the case.
Caroline, narrating: Welcome to season two of Visible Women, my weekly podcast from Tortoise, investigating how we finally fix a world designed for men. Iâ€™m Caroline Criado Perez. This week, weâ€™re looking at how our lack of knowledge around conditions like endometriosis is fueled by stigma and misinformation. Weâ€™re investigating how the historical shame around menstruation has contributed to the huge data gap when it comes to the female body. And weâ€™re asking, what might we stand to gain if we were to get over that shame.
As well as being an endometriosis patient, NoĂ©mie is also a professor at Columbia University in biomedical informatics, which is basically a branch of health research that uses big data sets to come up with new clinical insights.
NoĂ©mie: And it was always striking to me that there was so much information about different diseases and the course of diseases in these data sets. But then when we looked at specific conditions that were considered mysterious, there was hardly any data recorded about patients and endometriosis was one of them.
Caroline, narrating: NoĂ©mie wanted to close this data gap. And so sheâ€™s designed an app called Phendo that has been gathering data from thousands of women in order to get a better understanding of how patients actually experience endometriosis.Â
I know, actually asking women about their experiences. Itâ€™ll never catch on.Â
But this really matters because despite being so common, itâ€™s currently extremely difficult to get a diagnosis for endometriosis in large part, because we know so little about it. We talked to NoĂ©mie in more depth about her app and her findings in a bonus episode coming this Friday so listen out for that.
The huge data gap when it comes to womenâ€™s reproductive health is not just around endometriosis. In fact, the scientific communityâ€™s attitude to anything to do with periods has been annoying me ever since I discovered that many scientists routinely exclude women from their research on the basis that the menstrual cycle will interfere with the results. This is infuriating because yes, the menstrual cycle may well interfere with the results. And thatâ€™s why you need to study it. As I reported in my book, Invisible Women, so far, we have found that the pesky menstrual cycle is interfering with results for antipsychotics, antihistamines, antibiotics, and heart medication. These feel like the kinds of things you might like to know before you start prescribing medication to real life people with real life female bodies that come with a real life menstrual cycle attached. And itâ€™s not just the menstrual cycle which isnâ€™t studied. Itâ€™s menstrual blood as well.
About a year ago, I was scrolling through Twitter and I came across a tweet from a biomedical researcher called Federica Helena Marinaro. She had just submitted a paper about the benefits of stem cell therapy using cells taken from menstrual blood. And there was one peer review of her paper, which was particularly interesting. It wasnâ€™t glowing, but it was revealing.
Voice actor: In general, the topic idea is not that novel and could not be accepted as it is since almost all articles in the literature reported the severe undesirable and toxic effects of menstrual blood and all its constituents on the human body. Even in all religions, it is well known that menstrual blood and its stem cells are extremely, very toxic and of very low quality. This blood contains the destructive metabolic constituents with very potent cytotoxic activities. Thus, in toxicological criminology, some women in some cultures use very few drops of its potent toxic extract to secretly kill their husbands.
Caroline, narrating: Goodness. I had no idea, I could have been secretly murdering my husband with very few drops of my potent toxic menstrual blood all this time. Honestly, why do our mothers not teach us these things?
I was intrigued by this odd peer review response. So I asked Patricia to see if she could find out more about what had happened.
Caroline: I would really love to know from her, if she knows more about this, if this has happened to her before. Iâ€™d love to know what the journal was, if sheâ€™ll tell us. She wouldnâ€™t say on Twitter. And yeah, I mean, I have so many questions.
Patricia Clark: So do I. I want to know who the reviewer is and whether it was a man.
Caroline: I mean, I am going to get out on a limb here. Iâ€™m willing to bet you ÂŁ100,000. Maybe not ÂŁ100,000.
Patricia: Thatâ€™s quite a lot. Iâ€™ll take it.
Caroline: Yeah. So be very interesting if youâ€™re able to track her down.
Patricia: Yeah. Her Twitter has gone pretty quiet, but Iâ€™ll give her a try. Iâ€™ll try emailing her academic email.
Caroline, narrating: I canâ€™t guarantee the peer reviewer is a man, but I donâ€™t remember ever being grossed out by my menstrual blood. And so far, at least it hasnâ€™t killed me.
So what is it about period, blood specifically that seems to make scientists and researchers so reluctant to study it? My theory, weâ€™ve always been kind of horrified by it or at least men have. And in fact, if you look back at history, you discover that men finding menstruation pretty terrifying is a long and distinguished tradition. Pliny the Elder, the famous Roman natural philosopher warned that while menstrual blood could stop hailstorms and whirlwinds, it also had some less desirable consequences.
Voice actor: Contact with it turns new wine sour, crops touched by it become barren, grafts die, seeds in gardens are dried up, the fruit of trees falls off, the bright surface of mirrors in which it is merely reflected is dimmed. The edge of steel and the gleam of ivory are dulled. Hives of bees die. Even bronze and iron are at once seized by rust and a horrible smell fills the air. To taste it drives dogs mad and infects their bites with an incurable poison.
Caroline, narrating: My advice, donâ€™t give your dog a tampon as a chew toy.
Fast forward to the mediaeval era and there was great concern that drinking period blood could give you leprosy. I mean, I donâ€™t really see the big deal. Just donâ€™t drink your period blood. I have to say Iâ€™ve never felt the urge, but each to their own. It was also believed that period blood could corrode your penis, so thatâ€™s a big no to period sex then. In fact, period sex has long been a source of great anxiety. According to the authors of The Curse: A Cultural History of Menstruation in France, it was long believed that a baby born from period sex would be â€¦
Voice actor: Puny, languid, and moribund, subject to an infinity of fetid maladies, foul and stinking as a result of the matter from which it is conceived.
Caroline, narrating: Meanwhile, women have been historically banned from various temples and religious houses or from participating in certain religious practices during their period as they were considered unclean when they were bleeding. Many of these myths persist today leading to women being banished from their communities while theyâ€™re menstruating.
Newsreader: A young woman died while sleeping in a shed in Western Nepal as a result of the Hindu practice known as Chauppadi, whereby menstruating women are forbidden to sleep in their own houses and exiled to isolated huts.
Caroline, narrating: Millions of girls around the world also miss out on crucial education as a result of the stigma that still surrounds periods. And of course, thereâ€™s the decades worth of messaging telling us our periods are unclean and something we need to hide.
Tampax advert: Tampax tampons protect differently than a pad. So you feel cleaner and feeling cleaner is more comfortable.
Playtex advert: A convenient carrying case that comes in Playtex tampons or Playtex deodorant tampons. I take Playtex deodorant tampons for freshness in a tampon protection.
Miss Jensen: And pay more attention to your hair and your nails, and plan to wear your prettiest dress. In other words, be your most attractive self.
Molly Grows Up, 1953 educational film
Phone notification effect
Patricia Clark: Hey, everyone, Iâ€™m feeling a little bit downtrodden in my search for Federica. Sheâ€™s the one whose paper was rejected because of the murderous menstrual blood. And I really want to hear her story, but yeah, sheâ€™s not replied to multiple emails and Iâ€™ve tried her social media as well. And Iâ€™m slightly worried that maybe she just doesnâ€™t want to talk about the whole ordeal or maybe she wants to put the whole thing behind her. I do wonder whether Iâ€™ve maybe got the wrong contact details though, so we could try one of the co-authors on her paper, or maybe the lead author and see if we can get their email that way. And the only thing is like, Iâ€™m not 100% sure which paper it is. I think sheâ€™s got a few menstrual blood publications out there. So Iâ€™m trying to figure that out and Iâ€™m going to send one last desperate email explaining that we really just want to hear her story and thereâ€™s nothing sinister going on. So wish me luck.
Caroline, narrating: While Patricia was busy tracking down Federica, I had a big question to answer. Is menstrual blood a useful source of stem cells or is it radioactive waste that could ruin an unsuspecting harvest? And most pressingly, can I really use it to kill my husband?
Dr Christine Metz: I could just tell you that. When I had one of my grants on menstrual blood reviewed here in the States, one of the reviewers said that weâ€™re not following any biohazard collection methods. And my response to that is, does any womanâ€™s bathroom have a biohazard sticker on it? No.
Caroline, narrating: This is Dr. Christine Metz.
Christine: Iâ€™m a professor here at the Feinstein Institutes for Medical Research. And as a researcher, Iâ€™ve been focused mainly on inflammation with respect to womenâ€™s reproductive health.
Caroline, narrating: Christine has been exposing herself to potentially murderous menstrual fluids in her role as co-director of the ROSE Study.
Christine: So the ROSE Study stands for Research OutSmarts Endometriosis. Endometriosis is probably one of the most misunderstood womenâ€™s diseases. It affects one in ten females of reproductive age, including young teens and preteens. Thereâ€™s no known cause of endometriosis. We donâ€™t understand what causes it. There is no cure and thereâ€™s no way to prevent it.
Caroline, narrating: The ROSE study includes a registry of over 2,000 women from North America who have been providing Christine and her colleagues with samples of their menstrual blood.
Christine: And the focus of the ROSE study is to study menstrual effluent for two purposes. One is to develop a noninvasive diagnostic for endometriosis.
Caroline, narrating: This is really important because to diagnose endometriosis right now, patients have to go through surgery.
Christine: They do a small incision in your belly, they insert a camera, and kind of blow up your belly so that they could see everything inside and they look for lesions. That is a kind of scary procedure for many young people and older people to go through, to be diagnosed for a condition. And itâ€™s not uncommon to hear women and young teens say that theyâ€™ve undergone this surgery a couple of times before theyâ€™ve actually been diagnosed.
Caroline, narrating: And it can take years to even get to this point. In the UK, endometriosis currently takes an average of eight years to diagnose. Christine says that in the US, it takes seven to ten years
Christine: Or even longer, which is not uncommon at all.
Caroline, narrating: Needing to go through invasive surgery just to get a diagnosis sounds awful, but it might be worth it if the diagnosis improved your life. The thing is, usually it doesnâ€™t.
Susie: Iâ€™ve had two laparoscopies. Iâ€™ve had the mirena coil to help treat the pain and the bleeding.
Alice: Itâ€™s just that kind of constant game of you get a little bit of help or relief, and then it goes away, and it comes back, and it goes away and it comes back.
Brittnee: And they said, because it was so bad, weâ€™re going to put you on Zoladex for six months and then youâ€™re going to have another laparoscopy. And what the Zoladex does is it gives you a synthetic menopause.
Caroline, narrating: Patricia was still struggling to track down the elusive Federica so I decided to have a search on Googleâ€™s Scholar to see if I could find one of her co-authors. The problem was we still didnâ€™t really know which of her papers it was that had attracted the murderous menstrual blood peer review. But then I thought I might have had a mini breakthrough. I told executive producer Basia all about it.
Caroline: I found what I think is the paper that eventually was published, which was about using menstrual blood to promote healing after a heart attack in pigs and the â€¦
Basia Cummings: Pigs that have heart attacks?
Caroline: I think the pigs were all fine because they got treated with menstrual blood. So basically there is a guy on there who is the person to whom correspondence should be directed, who is different from the person that we contacted on Twitter. But that was the next thing that I thought we should try.
Caroline, narrating: As well as trying to develop a noninvasive diagnostic for endometriosis, Christine is also hoping to develop a cure or at least something that relieves the symptoms. And she believes that menstrual blood may hold the key to solving both these problems. So sheâ€™s been spending time looking at the endometrium, the lining of the uterus
Christine: Every single month after menstruation, the endometrium has to regrow itself and it has very little time to do so. So there are stem cells that are present or stem-like cells that are present in the endometrium that are flushed out during menstruation. And there are some that remain behind that regrow the endometrium. At menstruation, the lining of the uterus is literally ripped off and removed. Thereâ€™s a big wound healing event and there arenâ€™t any scars in the endometrium every single month. And I think that perhaps menstrual blood, it has some other properties that have been yet to be discovered, that could be clinically useful for both men and women.
Caroline, narrating: I donâ€™t know about you, but all this regenerative and scarless wound healing stuff isnâ€™t really giving me huge â€śSo radioactive, I could kill my husband with one dropâ€ť vibes. And I canâ€™t help wondering, how much earlier could we have discovered the awesome healing power of periods if men hadnâ€™t wasted so much time worrying about menstruating women turning wine sour?
With researchers like Christine on the case, these gaps in our knowledge about the female body are starting to close. Although it hasnâ€™t been plain sailing.
Christine: We thought we would be able to recruit women to the study through gynaecologists. And that seemed like an easy thing. We would put some cards up and flyers in gynaecologist offices and ask people to donate menstrual blood for us to just start learning how to collect it and process it. And our reception from many gynaecologists was, â€śI canâ€™t ask my patient to do that. I just canâ€™t ask them.â€ť
Caroline: What year was this, that gynaecologists were telling you they couldnâ€™t possibly ask?
Christine: The study, I think was, Iâ€™m going to say maybe 2014. Itâ€™s not that long ago, but I could tell you many of them told me that.
Caroline: So why do you think that they felt that? What was the problem? Why could they not ask their patients for menstrual blood?
Christine: I think it was their response to menstrual blood, that it was not a biological sample, that it was discard material that they preferred not to talk about. And I think itâ€™s really a disservice to women.
Caroline: But we get urine samples.
Christine: We give urine samples all the time and people give faecal samples for all sorts of tests now. So thatâ€™s not uncommon either. And people seem to have no problem with that.
Caroline: I mean, I find that fascinating. Like for me, especially faecal samples seem much more disgusting.
Christine: Itâ€™s been a challenge. Itâ€™s been a real challenge to accept it as a potentially informative and important biological specimen.
Caroline, narrating: And it wasnâ€™t just blood that Christine struggled to get hold of.
Christine: We have had extreme difficulty in getting funding for our endometriosis work. And I think part of the problem is that thereâ€™s very little money out there for this. So for example, for the past 14 years, endometriosis research received $176 million in NIH research support for a disease that affects 10% of women. Now to compare that to another disease, Iâ€™ll give you hepatitis, which primarily affects more men than women, it received $4 billion in NIH funding compared to the 176 million of endo during the exact same time, that 14 year period.
Caroline: Whatâ€™s the prevalence of hepatitis?
Christine: About 1%.
Caroline: 1%. Wow.
Christine: Thatâ€™s correct.
Caroline: Thatâ€™s quite striking.
Caroline, narrating: Actually, funding was an issue that affected every researcher we spoke to. So I asked Patricia to look into how widespread this problem really was.
Patricia Clark: I found a really interesting meta study that looks at different studies to do with health and what funding theyâ€™ve received from the NIH, which is the American government funding body. And surprise, surprise. It basically found that anything that affects women primarily is underfunded. Or if an issue primarily affects men, then itâ€™s â€śoverfunded.â€ť It basically receives way more funding. And some of the most underfunded diseases are migraine, headaches, anorexia and endometriosis, which all predominantly affect women or exclusively affect women.
Caroline: Iâ€™m really interested that the diseases affecting men are overfunded.
Patricia: So to give an example, prostate cancer, for example, received 263 million in funding, endo received 13 million in 2019.
Caroline: And itâ€™s not just academic research where funding is a problem.
Ridhi Tariyal: When I was pitching in 2014, I felt like there was a lot of fundamental basics, we had to explain.
Caroline Criado Perez: This is Ridhi Tariyal. Sheâ€™s the co-founder of a female healthcare startup called NextGen Jane.
Ridhi: We were pitching to an investor once and he couldnâ€™t say period. He kept saying â€śThat time of the month where a woman does what she does,â€ť which made me suspicious. I wondered, I was like, do you actually know what a woman does at that time of the month?
Caroline, narrating: Ridhi is taking menstrual research out of the academy and putting it in the hands of women.
Ridhi: We collect samples vis a vis a tampon from the vaginal cavity, and those samples range from menstrual effluence, so which is your shed uterine lining combined with blood combined with other cells during your period. As well as we use the tampon during non-period times in your cycle where we are actually getting access to vaginal fluid.
Caroline, narrating: When they were starting out back in 2014, even sympathetic collaborators could be pretty clueless.
Ridhi: We had great meetings with oncologists, thereâ€™s obviously a lot of interesting oncology application to a tampon based collection system. And there was a really nice oncologist and he happened to be a male and he was very progressive and he was like â€śThis is amazing, I love this idea, this could really transform oncology. So youâ€™re telling me that youâ€™re going to take the tampon that a woman puts in at the start of her period and takes out at the end of her period and youâ€™re going to do genetic sequencing of that?â€ť And I was like you almost got it except that a woman doesnâ€™t wear one tampon for her entire period.Â
Caroline, narrating: Ridhi started looking into menstruation following a doctorâ€™s appointment back in 2013. She went in for a fertility checkup, but her doctor refused to order any tests.
Ridhi: You either have to come in with some sort of manifestation of disease for them to start the diagnostic odyssey. To say, letâ€™s figure out whatâ€™s going on with this individual. Or it has to somehow change the advice you would be giving your patient. And those tests results in her mind resolved neither. They would neither change the advice that she gave me nor was she actually trying to find out the answer to what was going on with me, because I didnâ€™t really have a problem that I was bringing to her.
Caroline, narrating: At the time, Ridhi didnâ€™t have a partner and she wasnâ€™t actively trying to get pregnant, which was the doctorâ€™s rather unhelpful advice for how she could check out her fertility without tests.
Ridhi: My problem was Iâ€™m trying to practise proactive, preventative care. And thatâ€™s not something that weâ€™re just set up really well to do here. And so I wanted to develop a way that if people wanted to get access to these indications and these tests, they could do it without sort of unnecessary physician intermediation, saying these results wonâ€™t be useful to you. And so initially that was sort of the kernel of aggravation that I was chasing to say, why do you get to say that I donâ€™t need these tests? And they wonâ€™t be helpful for me? Why isnâ€™t this a decision that I get to make?
Caroline, narrating: Ridhi realised that the main obstacle to getting the information she wanted was the blood itself. Fertility tests are currently done by analysing blood taken from a vein in your arm. And you canâ€™t get a blood test like this without having it ordered by a doctor. And so Ridhi started thinking, how could she get around the gatekeepers to access the information she wanted about her own body? And then she realised, we have periods. This blood is coming out anyway every month. Why not use it? Although, Ridhi doesnâ€™t actually call it menstrual blood anymore.
Ridhi: I call it effluence instead of effluent. Effluent means trash and effluence means flow out. And I think weâ€™re just trying to be very deliberate in saying itâ€™s not trash. It should be studied. It should have been studied before now. Thereâ€™s so much of our research that weâ€™re doing that is just fundamentals, that should have been worked out in academia decades ago thatâ€™s not. Because we thought about it as trash. When people say menstrual blood, itâ€™s the same thing, itâ€™s distracting. You tend to think itâ€™s just blood. You think itâ€™s red blood cells and immune cells, which you could find in a venous blood draw. But there are things in menstrual effluence that you will not find in a venous blood draw. From a genomic perspective, from a molecular perspective, you are getting access to signals you could not otherwise get short of an invasive biopsy of the female reproductive tract. Thatâ€™s whatâ€™s interesting.
Caroline, narrating: What Ridhi ultimately hopes is that NextGen Jane can provide women with ongoing insights into their own body, without the need for one off invasive tests. She explains that the uterus is extremely sensitive to whatâ€™s going on elsewhere in our bodies, which makes tracking your menstrual blood a brilliant way to track your overall health.
Ridhi: And internally, we actually refer to it as a monthly lagging indicator of health. Since we have access to your uterine lining, thatâ€™s passively shed, generally on a monthly basis, depending on what type of hormone you might be on. You are able to actually assess and track definitely your reproductive health, but possibly even just overall health. And so again, this is a big endeavour for us. This is not a one off, this is not a five year, this is fundamental research that should have been happening for decades. And thatâ€™s where that ultimate power is going to come in from, is when weâ€™ve been tracking women for decades and are able to make comments about things like this.
Caroline, narrating: Since NextGen Jane launched in 2014, theyâ€™ve collected thousands of samples. Although before they could start to analyse them, they had to iron out some default male problems like addressing the fact that the technology currently available to study cells is set up for studying much smaller cells than the ones in our menstrual blood.
Ridhi also made my day by explaining how NextGen Jane is accounting for the menstrual cycle in their research, a radical departure from the standard clinical procedure I outlined earlier of simply pretending it doesnâ€™t exist.
Ridhi: Embrace the noise, because thatâ€™s fundamental to uterine and female reproductive biology. We do have hormone systems that are going to interfere and create all sorts of variability. Itâ€™s not an academic exercise for us. From a commercial perspective, I actually have to embrace the noise to say, this has to be relevant for whateverâ€™s happening in actual female born bodies. I have to create diagnostics that are able to help whoever comes in the door, whatever is going on in your body. I eliminated all of this noise. I got people who are just on the same birth control. I got the same ethnicity. I did a very narrow band of age group. And look what I found. Thatâ€™s interesting. How broadly applicable is it? Unless you can eliminate that hormone cycle from human female bodies, then do not try to eliminate it from the mouse model and certainly embrace it in your clinical research.
Caroline, narrating: The really good news is that after a slow start, the funding seems to now be pouring in.
Ridhi: Weâ€™ve raised over 12 million. 12 million is from venture capitalists and angel investors. 2 million is from NIH. So the majority is from typical funders.
Caroline, narrating: NextGen Jane will be initially launched as a direct to consumer product.
Ridhi: And so the intent is float this to the market to see if there is an appetite for out of pocket pay, for people who are tired of going through a medical diagnostic odyssey, do not want to have a surgery to find out they have a condition, and would just prefer to pay out of pocket, to send in a tampon, to find out whatâ€™s going on with their bodies.
Caroline, narrating: The next step will be to use the data she gathers in this initial launch stage to convince insurers that this is worth paying for.Â
Caroline: You seem very passionate about what youâ€™re doing. Are you excited about the future of NextGen Jane and of menstrual effluence?
Ridhi: I am. I mean, I am for multiple reasons. One is that again, as I mentioned, we started pitching this in 2014 and the environment for pitching this now in 2022 is just so different. Back, again, even beyond, it was difficult to talk about menstruation. Back then people had trouble pronouncing endometriosis, and because people are talking about, itâ€™s sort of entered our vernacular and everyone has become familiar with the condition. Many more individuals who are in a position of fundraising or exploring the condition realise that they actually know many people with this disease. And now, every time I go speak to someone about it, theyâ€™re like, â€śOh yes, I know several friends who have this and theyâ€™ve struggled with it and hate the drug options. And there should be somebody working on this.â€ť
Caroline, narrating: Christine also feels optimistic.
Christine: I think itâ€™s going to take several years of hard research, but I do believe that we will learn a lot about uterine health by studying menstrual effluent. Our real vision is that someday, hopefully in my lifetime, we see that menstrual effluent is part of an annual gynecologic exam for every patient and that itâ€™s not ignored.
Caroline, narrating: And NoĂ©mie feels her approach of actually speaking to women has been vindicated.
NoĂ©mie: Part of my research agenda is definitely raising awareness and making the case that itâ€™s useful to ask patients for their experience of disease, especially in populations that are historically not heard, like women and women of colour are, for example, in the US even less heard than white educated women. So my goal is definitely still very much to work on endometriosis, but I think to me, itâ€™s a great example of things can change when you start asking patients in terms that are relevant to them rather than in terms that are relevant to the scientist.
Susie: And it was only when I went to Dean Street Sexual Health Clinic in Soho, where I met a wonderful doctor who really took me seriously. And then thatâ€™s how I got a referral to a consultant who really started to help me understand.
Alice: Even to gain a diagnosis, I feel fortunate that Iâ€™ve reached that point because it takes such a long time and a lot of women are put off by the process because itâ€™s just not straightforward at all. And it really depends on the luck of the draw.
Brittnee: I have surgical nerve blocks on my pelvic nerves. I mean, it hasnâ€™t fixed the endometriosis, but my day to day life, it has massively improved. It just needs so much more funding for research. So I just really hope that there is more and more of that.
Caroline, narrating: If we really want to close the data gap, when it comes to the female body though, Ridhi says we all have an important part to play.
Ridhi: I mean, I would just encourage people always to find opportunities to participate in clinical research. That only way we resolve this problem, that there are not enough people that represent all of us in clinical research is by participating. And itâ€™s fun. Iâ€™ve participated in this research. I always believe you should be the first one to sign up if youâ€™re actually conducting the research and we need you.
Caroline, narrating: We were about to wrap up this episode when Patricia staged a last minute intervention.Â
Caroline: So Patricia Iâ€™ve heard youâ€™ve got some amazing news for me.
Patricia: I have some great news. I found Federica of â€¦
Caroline: Oh my God.
Patricia: Murderous, menstrual blood fame.
Federica Helena Marinaro: Hello? Can you hear me now?
Patricia, speaking to Federica: I can.
Federica: Oh, nice.
Caroline: I was genuinely starting to think she didnâ€™t exist.
Patricia: Itâ€™s not as exciting as other hunts that Iâ€™ve had on this podcast. It turns out I was emailing her old email and she doesnâ€™t have access to it anymore.
Federica: And so I lost the access to my former institutionâ€™s email.
Patricia: The paper that we thought she was talking about was actually not the one that was reviewed. It was a similar one. So she was â€¦.
Caroline: So I read the wrong paper?
Caroline: I read this whole paper about heart attacks in pigs for no reason. Okay.
Patricia: You did. Iâ€™m sure it was informative. So the paper she was referencing in her tweet was this paper about using stem cells from menstrual blood.
Federica: We are a group of women though, a group of scientists that are women. So letâ€™s try to isolate cells from our menstrual blood. And we saw that it was so cheap and without any pain, we didnâ€™t have to undergo a surgery to retrieve the cells. So we just needed a menstrual cup.
Caroline: They tested their own menstrual blood.
Patricia: How badass is that?
Caroline: Thatâ€™s amazing.
Federica: So what we decided to do for this paper was study a protocol to treat the cells in order to improve modulation, their immune modulatory potential and regenerative potential.
Patricia:They did some initial tests on it and they found, yeah, that it behaved in the same way as the other stem cells that we know about and study. And she was really excited by the initial findings. They submitted it to a few journals, including a major journal who theyâ€™ve asked not to name, because theyâ€™re really scared that it will stop them from being published in the future, which is really sad. But they submitted their findings to this journal and they got the infamous response.
Federica: Okay, Iâ€™m going to read it exactly, every word. â€śIt is well known that menstrual blood and its menstrual stromal cells are extremely, very toxic and a very low quality.â€ť
Caroline: Did she ever find out who the peer reviewer was?
Patricia:No. So she was really surprised by the response.
Federica: I was sure that it was a joke by my colleague. I was sure. And then she told me, â€śOh no, itâ€™s not a joke. It is true.â€ť
Patricia: All of these things are anonymous. These peer reviews. So she submitted it to four people. There were three other rejections for scientific reasons. And she says thatâ€™s absolutely fine. The paper was rejected elsewhere and now has found a home. And then this really odd response. And when she spoke to the journal about it, they said, â€śSorry, but your paperâ€™s been rejected.â€ť So, move on, kind of thing.
Federica: And we were also contacted by someone from the publisher that apologised for what happened and suggested us to send again the article to another journal of the same publisher. So we received an answer from the editor that our article couldnâ€™t be accepted for the reasons that were listed by the reviewers. Without saying, Iâ€™m sorry, because I was wrong when I chose my reviewers and this canâ€™t be accepted. No, no, it was just your article is rejected so if you want, send it to another journal. Bye.
Patricia: There was no apology for the language. There was no apology for the weird murderous menstrual blood reference, the toxicity, the fact that it sounds quite unscientific, and it sounds like they didnâ€™t see it as a problem. They took no action against the reviewer. So that person, she doesnâ€™t know anything about them, but we can assume theyâ€™re still working.
Caroline: Theyâ€™re still doing peer reviews.
Federica: Of course, we were disappointed and we decided to share this on the social media. And of course we received a lot of support from the scientific community and also from people that are not scientists because this canâ€™t be accepted, especially in science. I donâ€™t know. I can also understand, even though this is not okay, but I can understand that I am in the bar of the centre of a very small village, talking about the potentiality of my menstrual blood. And then I find there a retired man, 70 year old, that tells me, â€śOh no, thatâ€™s not okay. I canâ€™t accept to be treated with your menstrual blood.â€ť So I can accept it. But in science, this is not acceptable.
Patricia, speaking to Federica: Have you received any other kind of stigma when working in that area?
Federica: Not really.
Patricia, speaking to Federica: Do you think it was a one-off?
Federica: No. No. It never happens. I canâ€™t say that Iâ€™ve seen anything like this, neither in the industry, nor in the academia. Never. It was fortunately the first time and I hope also the last.
Caroline, narrating: Thanks for listening. And thank you, especially to Brittnee, Alice, Susie, and everyone else for sharing their stories about endometriosis. If youâ€™re a Tortoise Plus listener on Apple Podcasts or a Tortoise member, listen out for a bonus episode coming on Friday, where we go into more depth with NoĂ©mie about her endometriosis app. This episode was written and produced by me, Caroline Criado Perez, alongside Hannah Varrall and Patricia Clark. The executive producer is Basia Cummings. It features original music by Tom Kinsella and sound design from Sam Mbatha at String Cast Media.