I recently had the pleasure of being interviewed about my experiences of endometriosis on the lunch show on BBC Three Counties Radio, presented by Nick Coffer. It was a fantastic day and I’m really pleased I had some time to discuss this topic at length. I think Nick was very knowledgeable and asked really insightful and intelligent questions.
If you are in the UK you can current listen back to the show on BBC iPlayer here (starts at 41 minutes in). For those of you who are unable to access the recording I have written up the interview below. Enjoy!
NC: Let’s talk about a condition that is very common but little spoken about. I say very common as two of my very best friends have it. Apparently 10% of women of what we call reproductive age have endometriosis. It’s a condition that can cause chronic pain, fatigue, fertility problems. Claire Barker from Hertfordshire is with us, and clever, as she is doing a PhD in Psychology. Does this make you super clever?
CB: Oh absolutely <laughs>.
NC: Claire was diagnosed with endometriosis in 2014 after 1 years of symptoms, and she started her own blog- it’s called ‘The Endo The Wold?’ and it’s about her experiences with the condition. Endometriosis for me is one of those words that is very much in our common consciousness but we don’t actually know much about. I put it along things like PCOS. These things that are very specific to women. We have friends who have them, we have heard of them, occasionally they will pop up in ‘OK! Magazine’ or a celebrity will talk about them, but actually we know very little about them in the public.
CB: Yes. That’s there is some data to suggest that for the general public about 20% or less of people know what endometriosis is and can accurately describe it.
NC: We know it’s pain, we know it’s discomfort, and we think of it as being related to the reproductive system. So what is happening? What is your body doing?
CB: Ok. So, with endometriosis, cells that are similar to the cells that line the uterus that you usually shed during your period, those similar cells are found outside of the uterus- usually in the pelvis, and implant on other organs and tissues.
NC: Bad cells!
CB: Exactly. They respond exactly the same way that the cells inside your uterus do. So they are responding to hormones throughout the month, then they break down when you have your period and start to bleed. The problem with that is that when they are outside the uterus the blood has nowhere to go- this can cause lots of pain, cysts, adhesions…
NC: You mentioned periods four times there, and therein lies the problem because the symptoms can be similar to bad period pain can’t they? They are cyclical, they can involve blood, and they can be somewhat written off.
CB: Yeah. There is a cultural element to that as well. Periods can be difficult to talk about. And endometriosis can run in families, so if you’re struggling with those symptoms it’s possible that your family have as well. So when you’re complaining that you have painful periods your mum or gran will say they did too, so it completely normalises the pain for you, and then your opportunities to seek out help are reduced from there.
NC: But this goes back a long way to the turn of the millennium for you. You are now 29 so you’ve really been dealing with this since the age of 14? That’s a long time to go without anybody saying ‘OK Claire, this is where we’re at’.
CB: Yeah! It was an absolute nightmare to be honest with you. I first started going to my GP when I was 12 years old complaining of crippling period pain. But as the years went on, and I didn’t have any kind of diagnosis, I was adding a menagerie of strange symptoms like fatigue, bowel pain, chest pain…
NC: Can I just say anyone who uses the word ‘menagerie’ on my program is welcome back any time! Can you say it again? I like it!
CB: <Laughing> I was adding a menagerie of symptoms over time.
NC: You make symptoms sound so lovely!
CB: I know. Seriously though it was awful. Just having all these things going wrong with your body but having no explanation for what’s wrong.
NC: That’s the thing isn’t it, having this firework effect of things going wrong, and at the same time being tired, being in pain, it’s worrying as well.
CB: It was really difficult. For two or three years before my diagnosis I was so ill that I was watching my life crashing down around me as it was so hard to do my PhD, or maintain my relationships, and I was engaged at the time, and everything was so difficult. And when you’re constantly told that you’re ‘fine’ what can you do? What help can you get? How can you communicate what’s happening to anyone?
NC: Are you saying that the endometriosis had led to the breakdown of good relationships in the past?
CB: Most definitely. But it has also been hard to maintain my friendships too when you aren’t well enough to go out and you are not yourself anymore you know, your depressed and low and anxious. You’re not the same person and more and people see a change in you. But because you don’t have a diagnosis how can you communicate these experiences to anyone and be believed?
NC: It’s quite a pernicious condition when you think about it, because it attacks the very things that define you as a young woman. It attacks your energy levels, it attacks your mood, and I’m making assumptions but it attacks your ability to have a fulfilling sex life as well because if you’re feeling that rubbish and that much in pain we can join the dots on that. So it really goes to the heart of you as a young woman.
CB: It does, exactly, you’ve hit the nail on the head there. Endometriosis strikes in the prime of your life, unlike many conditions. I don’t think there are many diseases that can affect you both physically and mentally and every aspect of your life like endometriosis can. Particularly if you are struggling around diagnosis. It can be devastating to women’s lives.
NC: Talking about diagnosis here’s the bit I don’t understand. Surely if one in 10 women of your age suffer from it, it should be at the top of every GPs list?
CB: I know! There’s lots of different reasons why there is such diagnostic delay in endometriosis. The evidence suggest that it takes an average of 7.5 years min the UK from women first going to their GP with symptoms to being diagnosed.
NC: How do they find it? What do they look for?
CB: OK, one of the problems if that there are lots of different symptoms. Chronic pelvic pain and sub-fertility are two but there are many others. Another problem is there is a lack of a good diagnostic test for endometriosis. The only certain way to diagnosis it is through a surgery called a laparoscopy.
NC: You’ve had two of those haven’t you?
CB: Yeah I have.
NC: And what happens there, bearing in mind this is a lunchtime show.
CB: <Laughs> Don’t panic, it’s fine. It’s a keyhole surgery where they make a few small incisions, and they go in with a camera and have a look around your pelvis. And the surgeon, if they’re highly trained, are able to see the spots of endometriosis where they occur.
NC: So they can actually recognise it…
CB: Yeah. So it can look very different- it can look yellow, it can look black, it can look red, it can look really different, so you need somebody who is very highly trained to recognise it. They can also treat it at the same time.
NC: They basically scrape it away don’t they?
CB: Yes, ideally, they cut it out, which is what I’ve had. And hopefully you feel a whole lot better afterwards.
NC: Am I right in thinking that fundamentally this is it- it’s a chronic condition that never goes away?
CB: Yeah. There is no cure for endometriosis. But there is hope. I mean since I had my last surgery over two years ago I still feel like a different person. And there are lots of things that can be done to help. So I think that getting that diagnosis and then working with a doctor who really knows their stuff is the way forward.
NC: As a broader question, are we guilty for trivialising women’s symptoms? We are very quick to take the mickey or say ‘oh it’s just period pain’. But is this part of the problem?
CB: In a nutshell- yes! This certainly does happen. It happens on a micro level in your family but there is a wide attitude in society- with GPs and employers, like this. Lots of times I went to the GP and was told I’m just unlucky and that periods hurt. I think that because periods are such a common thing-half the population will have them, but most people don’t suffer horrifically so there can be a real lack of empathy there.
NC: Now you’ve got your baseline- you’ve had your surgery, how do you go about, and I’ve read your blog, leading a fulfilling life?
CB: With difficulty to be honest. This is something that was really interesting to me. I always thought when I get a diagnosis and treatment for whatever is going on with me, everything is going to be fixed and back to normal. But if your life has been falling apart for some time then it isn’t going to be fixed in one surgery, it’s a real process. For me it involved a mixture of counselling, diet, and exercise.
NC: As a PhD Psychology student have you resorted to traditional counselling to get your sense of self back on track?
CB: Yeah I had to. That’s been a big part of the journey for me. Obviously, I spent over a decade being told that I wasn’t sick when I was, so that brings up a lot of feelings like anger to work through. And I think realising that I have limitations placed on me that I didn’t know I had before. But I wanted to work through these. So counselling has been so helpful to me and I would highly recommend it to others.
NC: What’s the prognosis for you? I know you have a partner now, are you able to contemplate things like marriage and children? Can you talk about this stuff? I imagine communication is such an important part of living with the condition.
CB: It is. I’m actually married now…
NC: I apologise to your husband to demoting him to the rank of partner! <laughs>
CB: It’s fine. I am married and I was diagnosed shortly after we became engaged actually. When I woke up from my first surgery I was told fertility would be a big problem for me, and so that throws up this awkward conversation we had to have where I had to say you know ‘I love you and I want to marry you, but you have to be sure you’re OK with the fact that kids may not be in our future.’ That was massive deal. And we’ve been fine you know, we’re together. Fertility is something that has proven to be a struggle for us, but that’s something that we are working through together at the moment.
NC: I know it’s the worst thing in this situation when you’re going through fertility problems, but my best friend was given the bleakest prognosis for fertility when she was diagnosed with endometriosis and she went on to have a daughter, so it can happen. It’s not entirely bleak, I’m sure you’ve been told that there are options available for help.
CB: Yeah. And I think it’s important to have a positive outlook as much as that’s possible. It aint over until the fat lady sings as they say. So it’s important not to write yourself off until you’ve explored all possibilities.
NC: So the blog itself, why did you start it?
NC: I know the answer by the way, it’s because you thought of such a great name! The Endo the World?
CB: Ha yeah! I was so happy when that wasn’t already taken. When I as diagnosed it certainly felt like the end of the world. And I thought I’ve just been diagnosed with this life changing condition, now is a good chance to document my story as I love to write. It was also a way to connect with other women around the world, and that’s been one of the best things about it for me I think. It’s so weird- I’ve talked to people from Hawaii, Canada, France, to know that people everywhere are living the same truth as you.
NC: As somebody who has also lived the blogging experience I know how powerful it can be. You can find Claire’s blog at theendotheworld.com. And rather spectacularly, you can find Claire on Twitter as @EndoLadyUK. It does make you sound like a superhero.
CB: That was the plan. I’m thinking about wearing a cape full time <laughs>.
NC: If ever there was a book or novella in that, it would have to involve Endo Lady UK. So go and follow Claire- she’s lovely. And I know you are a big advocate of Endometriosis UK who have been a big help to you haven’t they.
CB: Absolutely- they’re fantastic. Go check out their site- there is loads of top quality information on there.
NC: You’ve been lovely, thanks for coming on.
CB: Thanks so much for having me on the show.
NC: You’re welcome, these things deserve a platform. And I have no doubt at all that a number of my regular listeners are in a similar situation.
People keep telling me that I am ‘brave’ for sharing my story so publicly, but it doesn’t feel that way to me and I enjoy it. It is not my fault that I have endometriosis and I am not ashamed of it. As far as I’m concerned I’m much more brave for living with this horrible condition everyday!
I’d love to hear your thoughts on the interview, and your own experiences of endometriosis.