International Women’s Day

In Conversation:
Alexa Chung & Lone Hummelshoj

To mark our IWD partnership with the World endometriosis Research Foundation, Alexa caught up with CEO Lone Hummelshoj to find out more about endometriosis, and the work that she does.

Alexa: Hi Lone, a pleasure to meet you and thank you for taking time to speak with
me today.

Lone: A pleasure to meet you too.

Alexa: Let’s just jump right in, shall we? For those who don’t know, can you tell uswhat endometriosis is? And don’t hold back.

Lone: Endometriosis is a disease. where tissue similar to the lining of the uterus is found elsewhere in the body. This tissue responds to the hormone oestrogen and grows and bleeds. But that blood has nowhere to go, so ends up forming lesions, cysts, and adhesions.

A: Is it caused by an overproduction of oestrogen or…?

L: No, but it needs oestrogen. That’s the hormone that feeds it, and that’s why men don’t get endometriosis.

A: So, when was it first diagnosed?

L: So, there is a little bit of umming and ahh-ing about that. It was John Sampson who coined the term endometriosis in 1927. There is a really interesting piece of historical research that I actually use in some of my articles, and it’s from a German doctor named Daniel Schroen who, in 1690, described the symptoms of endometriosis without having a name for the disease he wrote about. And reading it I thought, ‘that’s spot on’. And of course, it’s had some recognition since then but even now, you know it’s… I’ve just got to do a quick bit of math here… it’s 330 years later and we’re still struggling to get diagnosed!

A: Well, I suppose a reason for that is that historically women’s health issues have been far less researched than those that affect our male counterparts.

L: I agree. I also think it comes down to that fact that you just don’t talk about your abdomen over Sunday lunch, do you? You know, it’s just not the-done-thing.

A: I was diagnosed in 2019, whilst in LA filming a television show. I had a feeling that something wasn't right and it was painful.
 
L: As you may well know, endometriosis is among the twenty most painful diseases
there are, as recognised the by NHS in the UK.

A: And am I right in thinking that endometriosis used to be called the working woman’s disease?

L: It was referred to as the career woman’s disease.

A: That’s it! How did it get that moniker?

L: I think it used to be a case where assertive women, many of whom had access to private health care through company insurance, insisted on being referred to a gynaecologist and then got diagnosed, when many others didn’t have that access. If we go back to the 70s, you typically only got diagnosed if you couldn’t get pregnant, and were then being dealt with by a fertility clinic. It became the case where they then thought if you have endometriosis then you can’t have children. Absolutely not true.

A: Really?

L: Yes, two thirds of women with endometriosis have no problems getting pregnant. It depends on what type of disease you have, and we’ve not yet come far enough to map that, to say ‘this particular phenotype of endometriosis is the subtype that affects your fertility.’

A: So, does this link to the work that the World Endometriosis Research Foundation does?

L: It certainly does. The World Endometriosis Research Foundation, through collaboration with 47 centres in 21 countries, collects clinical data, surgical findings, and biospecimens using the same scientific methods. This data collection is led by the Universities of Oxford and Harvard. The data is all collected in the same way, so
that results can be compared. And, funnily enough, the latest results are actually being presented at the 14th World Congress on Endometriosis this
International Women’s Day.

A: Oh wow! Great segway there. Before you set up WERF, did collaboration not exist?

L: To some extent it did, but not in a meaningful way. I actually project managed the development of the very first guidelines on the management of endometriosis, and that’s how WERF came about. I was presenting a section of that guideline at a conference in Salzburg, saying ‘well we can’t recommend this treatment or that because we have no evidence’, and people came forward to say ‘oh we do that and we have really good results’. But they weren’t publishing their results, and studies weren’t extensive enough, so the collective and consistent evidence was missing. So, later on, and we all know that the best ideas happen at the bar, I was sat in the bar, and WERF was born on the back of a cocktail napkin from discussions colleagues attending that conference. We recognised that we needed to collaborate widely and WERF was founded within a year as a global effort.

A: And this seems more like a vocation for you than a job.

L: Well yes, it’s a vocation that’s become a job if you like. Having had the disease myself, I did some volunteering, and fell into it by accident. There was big congress happening in Copenhagen, and it was a hot summer and I didn’t have much on to be honest, so I went across to learn more! And as someone with a background in sales and marketing, I can’t help myself, and before long I was talking to a journalist about my experience. She interviewed me and I was perhaps a tad blunt so it made for some terrific headlines in a Sunday broadsheet paper. What happened next was a storm of letters that myself and a woman I had met at the congress went through and thought, ‘we have to do something.’, and we cofounded the Danish Endometriosis Society. A couple of years later, when the internet came into its own, I realised the need for factual information available for free to everybody. And I created Endometriosis.org. The rest is history!

A: We’ve already covered a bit of myth-busting today, is there any other misleading info out there?

L: Yes, that teenagers do not get endometriosis – they do. For most, the symptoms start during their teenage years. A problem is that many young women are on the pill, which can alleviate – or mask – the symptoms, so they might not know they have it until they come off the pill.

A: What else?

L: Endometriosis is not endometrium.

A: Did not know that, what is it then?

L: That’s a very good question. Endometriosis is tissue similar to endometrium. You remember at the start I said that endometriosis was tissue similar to the lining of the uterus? That tissue is endometrium. Endometriosis is found elsewhere in the body. It behaves differently. And if people believe that it’s endometrium then they’re studying the wrong thing.

A: And any parting words for us to finish on?

L: I think the positive change is clear; the formation of national support organisations, who have been running awareness campaigns, and from women
finding their voices and saying ‘why isn’t something being done about this?’ That’s why it’s so great that people with an audience like you, Alexa, can speak out to the audiences that we can’t reach.

A: I’m glad I can help. Lone, it’s been amazing to be able to talk to you about something that is so uncomfortable for so many women.