On today’s episode of Period Story podcast, I’m very happy to share a very candid conversation with Katy Lindemann, the founder of Uber Barrens Club. Katy is a writer and patient advocate in addition to her day job as a digital strategist.
Katy shared her journey through infertility and pregnancy loss, what she learned about her body, her inspiration for Uber Barrens Club and of course, the story of her first period.
Katy talks about reading the fabulous Judy Bloom book, Are You There God? It’s Me, Margaret? as a period rite of passage. She also shares the moment at the school gate that prompted her mum to make sure she understood the birds and bees 😄
Katy says that she went on the pill because she wanted to control her period and talks about what prompted her to eventually come off the pill and get diagnosed with lean PCOS.
We had a very candid discussion about what this diagnosis meant for her fertility journey at the time, what happened next and why Katy wishes she had paid more attention to her menstrual cycles when she was younger.
Katy says that she started Uber Barrens Club because she only ever saw one narrative of infertility, after people have been successful. She says that she wanted to write a different story and take back the word barren, reclaim it and make this silent sisterhood more visible.
Katy says that you don’t have to do this alone. She believes we should reach out, read up, learn about our bodies and not be afraid to ask questions. I love that!
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KATY’S BIO
Katy Lindemann is a writer and patient advocate, in addition to her day job as a digital strategist. Following multiple rounds of IVF and two miscarriages, in 2017 she was told her body would never be able to sustain a pregnancy.
She now writes about infertility and pregnancy loss and advocates for better understanding of the patient perspective of fertility issues.
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SHOW TRANSCRIPT
Le’Nise: On today’s episode, we have Katy Lindemann. Katy is a writer and patient advocate in addition to her day job as a digital strategist. Following multiple rounds of IVF and two miscarriages, in 2017 she was told her body would never be able to sustain a pregnancy. She now writes about infertility and pregnancy loss and advocates for better understanding of the patient perspective of fertility issues. Welcome to the show.
Katy: Hi. Thank you so much for having me. Great to be on.
Le’Nise: So, let’s start off with a question I ask everyone. Tell me the story of your first period.
Katy: I was 14. I was the, I was the girl who had, like, the flattest chest and, you know, at school where you could see everyone’s bra and I was the one who, like, thank God, Marks and Spencers made a crop top with a bra back. There was nothing going on. And my mum was 16 when she got her period. So, because I’m like identical to her in every way, I assumed, it was going to be then. And so, I remember at 14, there was some blood in there, I thought, oh, man, I might have caught myself or something like that. It just didn’t occur to me because in my mind, I was like, oh, it’s like 16 or something, I didn’t have boobs, so I was like, I wasn’t expecting it even though 14 is late. I just literally was like, ‘What’s happened?’ Then suddenly, like, it was just like … I was like, oh, maybe that’s a period. I was so stupid because anybody else, but because I just wasn’t expecting until like 16. It is so ridiculous. So that was it, it was just like, oh my God, that’s actually a period. I just felt really foolish.
Le’Nise: When you got it, what did you do next? Who did you talk to?
Katy: Probably had a conversation with my mum. I thought probably needing a bra would come first and they still hadn’t turned up. I didn’t think I’d had any towels or anything in the house because I just don’t think, oh, maybe there was the one from school when the woman came around. Honestly, I can’t remember. And I think she was like, OK, well, we’ll buy some pads or something like that. So, I think maybe she went out to the chemist or something or maybe she had a panty liner or something and kind of did that. Honestly, I can’t remember. But it was fine, it was all very, you know, it was all very easy. And I remember reading, you know, it was the rite of passage, the Judy Bloom, you know, Are You There God? It’s Me, Margaret. And I do remember having a conversation I think was a few months later with my dad. And again, like, my period was so easy, which we will come on to, but having like some cramps, I was like, “This period thing is not all it’s cracked up to be”, he was like, “Yeah, sorry darling.”
Le’Nise: You spoke to your mum, it sounds like you had a really good conversation, it was very open. How did you learn about everything else surrounding periods?
Katy: Well, it was again, like it’s one of these things where I wish I had, like, more visible, you know, more salient memories. Again, I didn’t have anything traumatic or anything. I’m told by my mum, at primary school, that she was having some conversation at the school gate with some other mums and basically she said they were doing ‘the have you told them about the birds and the bees’ and Mum was like, “Yeah, I think I’m going to need to buy a book, I’ll get them a book or something.” And then basically, apparently, my mum quizzed me and then the next day she told them, “Don’t worry, Alex North has told them everything and it’s all correct.” We then obviously had the conversation and she explained and but again, it was one of those things that, you know, and then we, a few years later, there was the school talk. I remember very clearly having a conversation, I was having a sleepover at a friend’s house and I remember having a conversation. We were all chatting with her mum about periods or something and her mum was saying, “I never connected what the period had to do with the egg”. And we were like, “Yeah”, because you kind know there was the cycle thing. And again, you were like, OK, well then there’s bleeding and duh duh duh but I just never really paid attention. So now when I started going through fertility and suddenly it was like, well, what happened to your periods? I was like, well, I vaguely remember that I didn’t get them very often, but I couldn’t tell you, like, whether I ever had a regular period because I just didn’t pay attention to it. And of course, they say, you know, oh, it’s quite normal for them to be irregular. So, I didn’t pay attention except for the fact I think I think because they were so irregular, when I was in sixth form or whatever grade that is doing my A-levels, I was a loser, I wasn’t having sex at that point, but I decided I wanted to go on the pill because I wanted to control my periods because I was like, well, boys don’t have to deal with periods during their exams, so I don’t want to, I don’t want to have to deal with having cramps. So, I went on the pill because that way I could back to back and not have to deal with it. And the thing is, I had super easy periods, what I now know, and I guess that’s the other thing, is that you have no idea what a normal period is. So, when people go, are they heavier? No idea! Who knows what normal is? So, the honest answer is, I don’t remember very much, except that they were irregular, and I just didn’t really want to have to bother with them.
Le’Nise: After you went on the pill at 17, 18, did you kind of just put your period to one side and just think, OK, the pill was taking care of it?
Katy: I know I came off it because I went to college in Florida for a semester and my grandmother lived over there and kind of ‘Costa Geriatrica’, she and my grandfather had retired to South Florida, you know, median age 85. I think I’d mentioned something about that I hadn’t had a period for like six months or something and I wasn’t on the pill at this point. And she was like, “Oh, my God, you must see your mother’s gynaecologist.” I was like, “Well, why would my mum have a gynaecologist?” because obviously in the US, it seems like everyone has a specialist and my grandmother was like, “That’s ridiculous. What does she get her pap smears?” I was like, “The GP with everyone else.”
And then, of course, my period turned up at Thanksgiving. You know, when everything was shut, I was at my grandmothers who unsurprisingly didn’t have anything. I didn’t have anything with me because, again, I just didn’t really have them very often. I don’t think I carried pads with me or tampons. I don’t think it happened often enough for me to be like, oh, I might get caught short with my period. So, then I had to go driving around trying to find a drugstore that I could get tampons on Thanksgiving.
Le’Nise: Did your period start to normalise at any point?
Katy: I don’t think so. So again, it’s one of those things that, you know, I wish I had been more aware and tracked because the answer is, I don’t know. I know I was on and off the pill, you know, various points on and off throughout university. And basically then when I got together with my now husband, so pretty much all of my 20s until I came off to try and have my fertility checked out because I had always suspected there might be something not quite right down there, because I knew I’d never really had regular periods. I couldn’t remember how often or this, but I knew again, that kind of six months, my horrified grandmother just stuck in my mind. I know I didn’t have that thing of, oh I’m late, you know, there was no sense of that. So, I was on the pill for most of my 20s and as far as I was concerned that was great because I was like, well, why would anyone want to have a period if you don’t have to have a period? And, you know, the doctor was like, yeah, you can back to back, you know? So, I kind of, you know, I’d have one every couple of months, again, not a period, but a breakthrough bleed. And as far as I was concerned that was great. I was like, OK, why would I want to have a period? So, the answer is, I don’t think they were ever regular, but I couldn’t tell you how often, you know, until I came off to find out at 28 to find out what was going on because I just don’t remember. So, again, I wish, if I had my time machine, I wish I’d paid more attention.
Le’Nise: And when you came off the pill at 28, can you talk a little bit about your journey of coming off the pill?
Katy: I was very settled with my now husband. And, you know, it was that thing of becoming more aware of getting older and I knew we weren’t ready to start trying for children, but I knew that I was like, yeah, you know, we want this in our future. And I think I remember being on the tube or something and reading something about fertility MOT, which is the egg counting thing. And again, it was one of those things that egg freezing had started to be talked about. I didn’t really know what that involved, but essentially I was sort of becoming more aware that, you know, if we wanted children in our future and being the sort of person that likes to plan, I was like, you know, maybe there’s something going on because I knew I’d never had a monthly cycle when I wasn’t on the pill. So what I decided to do was come off the pill so that I could then, in my mind, it was so I could go and get the egg counting thing, you know, to find out, because my view was, OK, this might not tell you everything, but at least if there is a problem that we know about and we can maybe make a decision. I think I had a vague idea in my head, I was like, maybe I’ll ask about egg freezing. I didn’t know what it involved, I just thought maybe I’ll find out about it. And so, I came off the pill and about six months later when I still hadn’t had one. And again, they say, you know, it can be a few months, but at six months, I asked the GP and they said, yeah, it’s six months, it’s reasonable to do some blood tests. So, they did some blood tests and they said, oh, this might indicate PCOS, so we’ll send you for a scan. So, you know, I got the letter in the post saying, come to this place and they explained in the letter that, you know, we will do an abdominal and we’ll do an internal one. I go along and the sonographer does the abdominal scan and kind of wiggles it around and he goes, yeah, you know, again, I now know he was obviously counting follicles and went no you’re not PCO, so we don’t need to do internal scans. So, then I basically left going, well, if it’s not PCOS, why don’t I have periods? So basically, I think they just sort of said we’ll just wait and see, you know, essentially because it didn’t say there was a problem, they were just like, well, I’ll just wait and see.
And the thing with the fertility MOT is in order to have bloods done, because they do your base hormone levels and antral follicles count scan when they do egg counting, you have to have it done at day 3 of your cycle, or day 2-4. So, you have to call us when you’ve had a period and I was like, but the problem is I don’t have periods. Now, what I know now is that I could have easily asked for a small course of Norethisterone or Provera, which is a form of progestogen that would just induce a bleed. I didn’t know that at the time. And so, they were like, “OK, you have to wait for a period”, I was like, “but the reason I to come is because I don’t have periods.” So, it took 10 months between coming off and getting a period. Oh, yeah, and that was it, they said, “no, no, no, it has to be at least another one,” I was like it could be another 10 months! I do remember it was about another month or so, for all I know, that could be my first regular period, no idea. So, I go to the clinic and I have the blood. This is a private clinic so you pay for the egg counting thing and the nurse does the scan and immediately she does the internal transvaginal scan, and she goes, “I can’t see anything.” That was it. So, I looked immediately like I’d done some Googling before then going what could it be? And essentially Dr Google said you can’t really see anything through the abdominal scan. So, for lots of people didn’t show anything on the tummy scan, but then when they had a vaginal scan, it was like everywhere. And so immediately, as soon as she put the wand in, sometimes known affectionately by fertility patients as ‘Wanda’ or ‘dildo cam’, it had the classic PCO, so they have like a ring of pearls, there was just follicles everywhere. And she was like, well, that’s a polycystic ovary. And there’s a difference between polycystic ovaries and polycystic ovarian syndrome, which I know, you know, lots and lots of people have PCO, and that doesn’t mean you have any symptoms.
If your PCOS is where you have the syndrome and there’s three criteria that you need, you have to have clinical or biochemical signs of hyper androgenism. And so, my testosterone was fine, but I had acne. You need to have irregular or absent ovulation. Yes, 10 months, no periods and PCO on ultrasound. And you have to have two of those three and I had all three. And I remember when I then saw the consultant with the bloods and again that showed there’s another one, where it’s a balance of your FSH and LH which is supposed to be around the same but if you have LH which is through the roof, then that often is a sign of PCOS although it’s not in the diagnostic criteria. And he said, “I know what you’re going to tell me. He said, “I know you’re going to say, how can I be PCOS if I’m not fat and hairy?” Which I stress his words, not mine. And essentially what he said was that there is the typical phenotype with PCOS, which is associated with insulin resistance and obesity and often hirsutism, he said: lean PCOS is actually very common, but very often not diagnosed because it doesn’t exhibit the symptoms of classic PCOS. And then when I actually came to see a gynaecologist for fertility, he said, “Yeah, lean PCOS is actually a lot harder to treat from a fertility point of view because classic PCOS actually very often lose weight change of diet, very often that can restore ovulation and that’s much easier to treat.”
He said, “Yes, lean PCOS is still an endocrine disorder, it’s still associated with insulin and that you’re sensitive rather than resistant, but it’s a lot harder because you can’t just”, and there is no just about it because, you know, when you’re fighting against insulin resistance, trying to lose weight is hideous. But he said it’s a lot harder to treat. And then when it actually comes on to fertility treatment, Clomid, which is an ovulation induction drug. It’s just a simple tablet and it helps to try and kick your ovaries into gear. He said very often women with classic PCOS will often respond very well, very easy to treat. He said women with lean PCOS, are often Clomid resistant, they’re more likely to not respond to that. So, he said if women end up having IVF due to PCOS, it’s very often women with lean PCOS because they are more likely to not respond to the simpler treatments.
So, again, it’s this misconception that there’s only one type of PCOS. And they essentially, they said, look, you’ve got loads of eggs, from an egg reserve point of view, there’s no major issues there. But because we knew that I have PCOS, essentially it was well, the warehouse is fully stocked, but the merchandise doesn’t ship. So, we expected that I would need some kind of help, to help with ovulation induction. So, what that meant was I actually went to see a private gynaecologist. I actually went to see him because I got diagnosed with epilepsy not long after we got married and so I wanted to understand, they call it preconception counselling, you know. What would the pathway be? Because obviously the NHS won’t see you for anything fertility related until you’ve been trying for a year or six months, if you’re over 35. But as we knew, I could have gone ten months without a period. It was like, OK, well, let’s try and find, you know, if you’re not even in the game. And then things kind of went catastrophically wrong with my ovaries in various different ways, which we can happily talk about.
But I am not a typical story in terms of fertility. My gynaecologist, fertility consultant said and he’s an expert in PCOS, like he’s written textbooks and he said, “I’m stumped, and I’m not usually stumped.” And actually, it turns out that the reason I can’t have children is actually nothing to do with my eggs, it’s to do with my womb lining and my periods. So, it’s to do with the bleeding rather than the eggs. Various things happened with kind of my PCOS disappearing and then coming back, which again, no one has an answer for, but it turns out that the reason that I can’t get or stay pregnant is actually to do with my womb lining. So that’s the reason I really wish I had paid more attention to my cycles when I was younger. My periods were problematic in the sense that they didn’t happen very often, but we thought we had an answer for that because I had PCOS. Okay, fine. That’s an explanation. What happened when I came off the pill because we wanted to start to try and we’d expected to have issues to do with my ovulation. It turned out, I won’t even go to the egg saga because it’s long, boring and very complicated but essentially what transpired to be the problem is that my womb lining wouldn’t grow and more importantly, it wouldn’t shed. So even when we did manage to get it to grow. Obviously, what a period is, is your womb lining breaking down and shedding as a menstrual bleed. And the first half of a cycle, is your womb lining, getting really juicy and getting to a nice big snuggly mattress for an embryo to snuggle into. And then if you don’t get pregnant, then it’s the womb going, right, let’s clean out, refresh, let’s reset. So, it’s, you know, it’s cleansing, etc. Mine wouldn’t do that. And it never did this before. So, we don’t know what happened between, you know, when age 28 or, you know, any time before that. To them, when I came off the pill at 33 and all throughout when I’d been on the pill, I’d had normal light bleeds, but they were red bleeding. Then when I came off the pill, essentially that just stopped. I had brown spotting, there was no red bleeding. It was you know, I didn’t need a tampon, didn’t even need a pad.
And I’ve seen one of the world experts in womb lining, there’s a guy in Coventry who’s a professor. Most of the literature that’s been written on the role of womb lining in implantation and miscarriage has been written by this dude. It’s at the Tommy’s National Miscarriage Research Centre in Coventry. And, you know, he’s “Professor womb lining”. And he said to me when I went to see him, and this was kind of at the end of our fertility journey where we tried all sorts of experimental treatments. And he said, “Miss Lindemann”, he said, “you are without a doubt the weirdest case I have ever seen. He said most people that come through my door are medically boring, but you are anything but that, I have never seen what happens in your womb in humans, only in mice.”
And then I had these womb biopsies that they do for these tests. I wasn’t going there to have these tests because actually the problem was, I couldn’t get to an embryo transfer because my lining just wouldn’t grow. And I’d had various surgeries and we can touch on that. But essentially, even when they did these womb biopsies, which aren’t very pleasant, but essentially, they kind of go in with the equivalent of a hole punch into your uterus and kind of essentially punch out to get a sample of your womb lining. I think out of four different punch samples there literally wasn’t any usable tissue for the lab to even look at. Like it was just gunk that was there wasn’t womb lining there. I’ve spoken to doctors on both sides of the Atlantic. No one has a clue; they’ve never seen this before. So, I am not typical.
But essentially, I spent I mean, we spent a couple of years, you know, between IVF, just trying to get me to have a period, trying to get me to have a bleed. And it was really upsetting, too. And actually, after our first miscarriage, we still, you know, we couldn’t get me to have a bleed. I had two surgeries, but we still couldn’t get me to have a bleed, we could get my lining to grow and we did some egg collection. Even when we got my lining to grow and you could see there was this, you know, quite juicy looking lining on ultrasound. I was like, ‘well where does it go?’ All I got was this kind of black gunk. And we could see that it thinned on the ultrasound. How did we go from 11 millimetres to three millimetres without having had a bleed? So, whatever happened, it’s reabsorbed and compacted. And it was just so upsetting because, you know, it’s supposed to be cleansing and regeneration and we knew from my surgeon that I still had pregnancy tissue in there and so I just felt like my womb was this, like, toxic place where, you know, my baby, had died, it was a miscarriage. And so just not being able to see that healthy red bleeding. And I still don’t have that. It’s really upsetting. And so, again, I wish I had been more aware, and I know that there wasn’t anything weird or abnormal when I was younger but it’s a very strange feeling, particularly when you’re going through fertility and infertility, that most of the time you’re supposed to desperately hoping you won’t get a period and you’re trying for a baby and you’re desperately hoping when you’re pregnant, if you’re pregnant, not to bleed. And so, you kind of have ‘knickerwatch’ where you’re constantly checking to see if you’re bleeding. Mine was the reverse for most of my fertility treatment. We were just desperately trying to get me to have a period as in to have a bleed. So, I am not the typical. None of this, we think, is to do with my PCOS. That’s the thing is. Is that we don’t know. But there is no reason that what happened with my womb and my periods, as in my bleeds, is necessarily anything to do with PCOS, because PCOS is a very common endocrine disorder. And so, I am not typical.
Le’Nise: What would you have done differently if you could go back? And I know it’s easy to play they should have, would have, could have game. With all of the knowledge and all of the experts that you’ve spoken to, if you had a time machine and I know you used a time machine analogy before. What exactly would you have done differently?
Katy: Be aware of your cycles. Be aware of your body. I would probably have, again, knowing what I know now, said, get a copper coil, so non hormonal contraception and then if you’re really, you know, if there was a holiday or exams or something, you know, knowing what I know now, then you can delay your period or take it to make sure that you don’t get a period for those important times. And I would not go on hormonal contraception. I would have got a copper coil and tracked my periods and been aware of my fertile signs. And again, it was a clue when I came off the pill and started, you know, I had bought Taking Charge Of Your Fertility and started charting and following your cervical fluid. And that with ovulation sticks that I thought that wasn’t something quite right, because you’re supposed to get cervical fluid, that is an indication of oestrogen and I wasn’t getting that. And so, I was like, what’s going on with my oestrogen? I’m not getting these proper periods. And I was convinced from the start there was something wrong with my lining. And it turned out that that was right. But again, it’s putting the pieces of the puzzle, so I would say with my time machine, track your cycles and I would not have gone on hormonal contraception, but I would have been aware that it is still possible to use hormones, if there’s something important or a holiday, a short period of time that you can control your menstruation in that way. So, yes, that’s what if I had a time machine that I would have done.
Le’Nise: Has your experience changed your view on hormonal contraception?
Katy: I think for me personally, yes, because my issues are so strange. What I would again say, I don’t think there’s anything wrong with it. And again, I think, you know, the Mirena is a wonderful thing and particularly for women that have heavy periods or endometriosis, because, again, in my writing and the stuff that I do now with fertility and my consultant was an endometriosis surgeon, he wrote the text books and endometriosis and fibroids are debilitating. And so, for many women, using hormonal contraception can be life changing. So, I’m not anti-hormones. What I would say is, to anyone who’s thinking about getting pregnant, if you are on hormonal contraception, come off well before you want to start trying. And particularly if you’ve got the Depo Provera, because that particularly can take up to a year that’s a lot longer, the washout time. So, I would say to anybody, if you’re thinking about wanting to start trying, come off hormonal contraception well before you want to start trying and track your cycles.
Le’Nise: What would you say is your feeling towards your period now?
Katy: It’s a horrific reminder of what my body can’t do. I mean, my cycles vary. I do have cycles of some kind. So, anything between like 35 – 70, but it may be about 40, 50 days. But I still don’t bleed. When I was doing my fertility treatment, I started using a menstrual cup because it was really important. And again, this is the other thing is saying take track of what your bleeds are like. And I was talking to somebody yesterday who’s had Asherman’s syndrome and that’s a problem that can happen, very unlikely but can happen post D&C surgical management and miscarriage or caesarean section. Notice what your bleeds are like, how much spotting is there? How much red bleeding? How many days? How many pads or tampons do you go through? Pay attention to that. And for me, it’s really upsetting because it’s still this horrible gunk. I had a copper coil put in after we finished treatment. Copper coils are used in the treatment of Asherman’s syndrome, which is to do with when you’ve got scarring in the womb. I don’t have that. But essentially, if you have problems with thin womb lining it is part of the treatment, ironically part of the fertility treatment, having a copper coil because the copper generates an inflammatory reaction in the endometrium and so it can essentially cause the lining to get thicker, which is why women who do have a copper coil very often will have heavier bleeds. I had one put back in after I’d had finished treatment for two reasons. One was that we needed to draw a line under the hope of wondering would we be that unicorn couple who had sex and oh, my God, you know, after all the failed IVF, and oh, my God, they’re pregnant. I couldn’t live in that permanent limbo. But the main reason was to do with in the hope that at least it would make my periods a bit more like a period than literally, I mean, I’m going to be completely TMI, if I didn’t know it was a period, I would have thought that it come from the other hole, like brown. It’s distressing because it is a reminder of how my body’s broken.
Le’Nise: You said some of your cycles are 50, 70 days long so every time you have a period, you have this reminder. And so, what have you done to give yourself the emotional tools to deal with that reminder?
Katy: When we reached the end of the fertility journey with my body, we tried all of these crazy experimental treatments, I used Viagra, we used blood thinners, I used a drug that’s used for chemo where we had intrauterine infusions squirted into my womb, all these kind of, you know, lots of supplements that are supposed to help with uterine blood flow. You name it, we tried it and none of that worked. Having lining problems is unusual. But when it was very clear that we were on the road to nowhere and we couldn’t even get off the starting block. And then when I went to see “Professor womb lining”, it was after that I decided I wanted to try and, there’s a bit of a sense of going when you can’t have children, or at least with my body, of going, I feel like, well, what’s my legacy? And you get quite existential about it or can do with infertility. I am not for one moment saying that having a life without children, albeit whether its childless not by choice or childfree, is in no way inferior. I am not saying that at all. I’m talking about my personal feelings, about how I felt about my body and my own journey.
Essentially, it came from a place of being p-d off that I only ever saw one narrative of infertility, the only narrative that we see when people do talk about it, is after they’ve been successful, particularly in public discourse in the media, if anything, you see a story about, you know, somebody talking about their IVF struggle, their infertility struggle or I had X number of miscarriages, it always ends with the miracle baby. Or they say, oh, we had this problem after they go and they announced the successful pregnancy and actually it’s very sanitised, the narrative is always stay strong, you’ll get there, it’ll be worth it when you have your baby in your arms, don’t give up hope.
And actually, that wasn’t how I felt. And that wasn’t how so many women that I got to know through these kind of infertility communities online, you know, these kind of secret Facebook groups and online forums and so on. You know, it was difficult and messy. And, you know, physically, emotionally, you know, we didn’t feel positive. And particularly when you’re in that situation and the only way out that is presented to you and you’re in the pit of depression, anxiety, you know, suicidal ideation is not uncommon with infertility and pregnancy loss. The only way out that is presented to you is having a baby, when you’re there going well, what happens if we don’t? Am I going to feel like it’s forever? And there aren’t many role models for actually the people who come through the other side who weren’t successful with that fertility journey, but also just acknowledgement that, you know, it’s desperately unfair, utterly unrelenting and really hard.
And so, I was fed up with the fact that in order to kind of have these conversations with other women about what it was really like, you know, you have to go looking for them. I would not have got through my journey if it was not the incredible system, solidarity and support of all the incredible women I’ve had the privilege to get to know through online communities. But it’s this hidden world because you have to go looking for it. And also, you have to find your people. You know, there are plenty of people who were hope and rainbows, and that’s great but that wasn’t where I was. So, I came from actually just being annoyed and frustrated at there only being one narrative. So, I decided that I was going to try and write about what it’s really like or at least the experience that I knew and experience that I knew a lot of other women that I got to know and had spoken to. And so, I decided to start writing a blog and I had a thought that I wanted to try and write a book because, again, the only other books always ended with the miracle baby. And that has been incredibly healing. And it’s actually taken me on this incredible journey of broadcasting and being in a film and, you know, going on radio and meeting so many people. And that has been what’s helped me emotionally, is being able to find my voice. That’s been what’s very long and convoluted answer to your question.
Le’Nise: No, it’s wonderful. And that actually leads into the next question. So, your blog is called and the organisation. Is it an organisation, the Uber Barrens Club?
Katy: So, I talk about infertility or, you know, anyone experiencing fertility problems. And I use that as shorthand including pregnancy loss. Anything about not being able to conceive or carry a baby to term. So that includes infertility, primary or secondary miscarriage, ectopic pregnancy, molar pregnancy, late miscarriage, stillbirth, anything that’s wanting to have a baby and not being able to. It’s a club that no one wants to join. But as with so many things, when you speak to other members of that same club, there is an instant understanding and a sisterhood that you have a common understanding and there’s a language and a shorthand and a vocabulary that need not be explained. And it’s just that, oh, it’s not just me, oh, you get it. And actually, the kind of the barren, barren is a hideous word, it’s been used throughout history as a slur, you know, incredibly derogatory, you know, devoid, lacking, inferior, dried up, you know, it’s an awful word, but actually it came as a sort of label. It was actually, ironically, on Mumsnet, you know, the largest parenting forum for infertility boards. And we jokingly, some of us kind of more irreverent, once jokingly referred to it as the Barren Ghetto, because we were like, well, that’s where the barren women go. How do you drain a slur of its power? You know, we’ve seen this so many different, you know, language, whether it’s dyke, queer, you know, you know, if you can reappropriate oppressive language and reclaim it, you can drain a slur of its power. And so, we kind of jokingly referred to ourselves as the barrens and the uber barrens saying we’re not just infertile, we’re really, really infertile. Now that happened to be on, you know, a thread on the forum.
But it isn’t a club or a community to me, it is anybody who has you know, we are a silent sisterhood, we are a sorority, there is 1 in 6 or 1 in 7 depending on the statistics you look at, couples experiences, trouble conceiving, 1 in 4 pregnancies ends in miscarriage. We are a very large sisterhood, but we’re also a silent sorority. Yes, I have Instagram and I’m involved in lots of different communities, but it’s not my club. To me, it’s a way of talking about the fact that you are not alone. So, it’s not my club, but it’s sort of my handle that I use for my blog, potentially the book that I’m hoping to write and anything I talk about. So, it’s not just about me, I am not Uber Barrens Club, anybody who has experienced fertility or problems, you are not alone, it’s a club that no one wants to join. Membership of our club is defined by exclusion from the club that we want to join, which is the parents club. And it’s a club that no one wants to join, but it means the world when you know you’re not alone. So that’s why I kind of use that as, I guess it’s not just a metaphor and that’s the kind of name I have but it’s really trying to hold space for a conversation.
Le’Nise: And so, tell us about a little bit more about the book you said you’re hoping to write.
Katy: So as I mentioned before, I just got frustrated that there’s lots of books about the beginning of the journey, that are about how to get pregnant or about your fertility, you know, practical guides, and, you know, there’s a couple of memoirs. Apart from a couple, the vast majority end with the miracle baby. And as I said, that there was a narrative that I knew with these online communities and the experience that I knew that I didn’t see reflected, was it was messy. And it wasn’t that I was ashamed being infertile, I was ashamed of all the feelings that came with it. And, you know, the guilt, the grief, the desperation, all that crazy, nasty things that you feel and that you think and the jealousy and what it does to your identity.
What I got from the online communities, you know, I have this incredible support, but you have to go looking for it. So, I wanted to try and kind of make the invisible visible and go well, how can I raise women’s voices to have a different conversation? So, I thought, well, that’s the book I would have wanted to read. I didn’t know if anyone else wants to read it, I thought they probably would. I knew women would pull their hearts out on forums and in anonymous communities and on Instagram and so on. So, I put up a website and I put up a survey to see whether those kinds of women would share. And this isn’t about your journey in terms of the practicalities or how many cycles did you do? Or how many losses? It’s about the emotions, because that’s the thing that binds us. That’s the thing that is a club, is that it doesn’t matter whether your journey is long or short, successful, not successful, it’s not about identities, there are emotions that bind us that we will all have experienced in one form or another. So, I put up a survey to see whether people would be willing. And I was amazed at the amount of responses that came in. And, you know, I asked in the survey, would you want to read a book like this? And again, so many people said yes, because I would have felt less alone, I would have known that the feelings that I have are normal. So that was the thing, my sort of three goals that I would like is one to, you know, help people know that they’re not alone. Two, to try to normalise and validate that whatever you are feeling, however weird or uncomfortable, somebody else has felt that too. And then the third thing is to actually help them to know that not every story ends with a baby, the sense of you’ll get there might not mean but me a baby, but you will get there and you will be okay whatever happens. So, I’m now trying put together and assemble that into something resembling a book. I’m now writing about it. I’ve written in The Guardian and it’s just taken on a life of its own and it’s very healing.
Le’Nise: That’s a really nice message. You will be OK, no matter what happens. And I think that’s you know; you mention the kind of hope and flowers and rainbows of the fertility community. And I think this more realistic message with a dose of realism is really nice for people who just don’t really vibe with that kind of uber positive message.
Katy: Everyone is different. And that’s fine. That’s the thing. There is no right or wrong way to do this. There is no right or wrong way and so I’m not doing that down at all. But that wasn’t where I was and it can feel very oppressive, especially when you’re told, just relax, think positive. No. Stress relief is not going to get you pregnant and it’s not preventing you from getting pregnant. Infertility causes the stress; stress does not cause infertility. In times of acute stress that might affect your ovulation but when you look at the fecundity rates of conflict zones and famine zones, women still have babies, you know. So, it’s okay, you’re allowed to feel the feels.
Le’Nise: How can women get in touch with you or men?
Katy: Yeah. Men are so important. Men are so often forgotten. And the thing is it takes at least two people to make a baby, sometimes more depending on donor, or conception or surrogacy. You can find me at uberbarrens.club. I’m on Twitter and Instagram @uberbarrensclub and you can email me at Katy@uberbarrens.club. And if you go to the website, there is a survey, you just find the share button at the top, so it’s uberbarrens.club/share, there’s a survey there for both women and men. It’s in sections, you can save each section as you go along. Lots of people have recommended saying if you do want to take part, it’s quite helpful to write your answers offline and copy and paste them in because then you can kind of come back to stuff and don’t worry if your browser crashes. I really want to hear from anybody wherever they are in their journey, whether they’ve been successful or not. There is actually a section about pregnancy and parenting. Primary or secondary miscarriage. Anything that has experienced or has experienced or wherever you are successful or not. I would love to hear from you.
Le’Nise: Ok, well, one last thing you would want listeners to take away with them. If you could distill all of the amazing pearls of wisdom you’ve shared, what would that one thing be?
Katy: Reach out so, you know, reach out, read up, learn about your own body, reach out. Don’t be afraid to ask questions. Reach out to other people. You are not alone. You know, if I had said in one sentence, you don’t have to do this alone.
Le’Nise: Wonderful. Thank you so much for coming on to the show, Katy.
Katy: Thank you so much for having me.