“A womb is not just for creating children”

A conversation about endometriosis, chronic pain, medical racism and grief

Illustrated portrait of Jodie by Francesca Cook

Welcome to GriefSick Chronicles, a collection of conversations exploring chronic illness grief.

Jodie Worton is an Executive Assistant at MAIA and a Freelance Executive Support Specialist living in Essex with her partner and Miniature Labradoodle named Caesar. Jodie was diagnosed with Endometriosis in 2017, a condition she has been coping with since the age of 13. Additionally, in 2023, she was diagnosed with Adenomyosis and Fibromyalgia. Visit Jodie's Instagram profile to reach out to her; she's open to addressing any questions, particularly if you're navigating your own path towards diagnosis.

In this conversation, we talk about

• The relationship between chronic pain, mental health and grief

• What Jodie’s womb means to her, and her anticipatory grief for her potential hysterectomy

• The security of the familiar aspects of chronic illness, even if they’re difficult or painful

• The grief of not being able to participate as freely in life and work as healthy people can, and the grief that accompanies lifestyle changes, like going sober

• The whiteness of how endometriosis is portrayed in media and the racism Jodie has experienced in the hospital system as a woman of colour.

I’m grateful to Jodie for tenderly sharing her story with GriefSick, particularly her nuanced relationship with pain. I appreciated her perspective on her body and her womb as someone who has endometriosis and doesn’t want children (it’s a rarely shared view).

***Please be aware that in one part of the interview, we talk explicitly about an accident involving severe burns, medical trauma and medical racism. I have indicated where this falls in the transcript below, should you wish to skip it***

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You can also listen to our unedited audio conversation. Tender discussions about Jodie’s accident are woven throughout our conversation, unlike in the written interview below, where I’ve grouped them together in one distinct section.

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Can you describe your journey with chronic illness?

I was diagnosed with endometriosis in 2017, after a very long journey of getting to that point. I was 31 when I was diagnosed. But I've lived with the pain since I was 13 or 14. It was just kind of put down to, “you've got a bad period, that's all it is”. And it wasn't until early 2017 when my friend watched something on TV, and she said, “I think this might be you, why don't you go to the doctor and check?”. And I was like, oh my gosh, I've never even heard of this. I went to my doctor. And he referred me directly to the gynaecologist at the hospital. I then got put on the list to be diagnosed. I went to the doctors in April and by September, I'd had my diagnostic laparoscopy and it was confirmed I had widespread endometriosis. So as you can imagine, it was such an emotional point. Because the pain I had been experiencing now had a reason. I had been living with this chronic illness for most of my life. I remember when the surgeon told me, I just burst into tears. My mum was there with me. She was like, “yeah, but you know, this is what you've waited for”. And I said, no, I'm not crying because I've got endometriosis, I'm crying because of how long it's taken me to be told I have a chronic illness. Being told by the doctors, every time I go, “we'll try different contraceptive pills to see if that will help with your hormones and help with your pain”. And nothing had ever worked; for it to then to be, like, actually, there's a reason why and I don't have to keep fighting.

Can you tell me more about the symptoms of endometriosis?

Symptoms can be quite varied. Mine are brain fog and extreme abdominal pain. The pain can range from my stomach or my ovaries to the tops of my thighs and down my legs and then the bottom of my back down to the bottom of my bum and then sometimes in my arms, but I've now worked out that the arm pain is Fibromyalgia.

Oh, I have such a funny relationship with pain. I'm very good at hiding it. If I’m in pain, someone will say, “are you okay?”. Yeah, I'm fine. “Are you sure you're okay?”. Yeah, I'm fine, don't worry about me. That's another thing that's mixed in with how I've grown up and how I've tried to look after myself and not be a burden on anyone. I realised after a bad accident [see below] how much I've been holding, being in pain. And actually, it's so important to tell people if I am in pain. The last couple of years I've done that and I feel such a relief, like a release. A lot of my friends have said to me, “has your endometriosis got worse, you're more vocal about it now?”. I said, no, I just never spoke about it before. I didn't want to be a burden on anyone. But now I'm so sick and tired of having to constantly be in pain and pretend that I'm okay. I don't want to have to do that anymore.

I have been diagnosed with depression and anxiety. And I think that my endometriosis has contributed to that. Because constantly being in some kind of pain every day, it's like there's always a constant darkness. Before I was diagnosed with depression, I was just kind of trying to get through each day. I'd often end up being really, really, really low for a very long period of time, then all of a sudden would come out of it, like, oh, I'm fine now. I guess as well, I always feel so blue or down and I never really think of it as grieving, but it is. The grief is that I'm always gonna have some kind of chronic pain and actually, I don't really know my life without it. It’s an endless grief that I will never not feel like that. 

I've been fighting to try to no longer be in pain. I've had three operations for my endometriosis. My last operation confirmed that I had adenomyosis which is endometriosis within the womb. And the only way that that can be stopped is the womb has to be removed. The next steps are either to have ablation, which is where they cauterise the blood flow to my ovaries, or a hysterectomy. My mum has said to me, “why don't you just have the hysterectomy? What if it actually eradicates all your pain”? And it's like, yeah, but what if it doesn't? And for me, it's not about having children, I made that decision early in my 20s. I'm not destined for children. That's not what it's about. It's about the loss of something, the loss of having a period. And actually, even though it's very painful, it's still something that I've had since I was 13 years of age, and I've had it constantly. If I have the hysterectomy, it's the loss of having the menopause. And speaking with a friend, they were like, “yeah, but you know, women who go through the menopause, it's not a great thing”. I said, I know it can be difficult, but that would be an experience that I would never get. And actually, it's very important. We have a period for most of our life. And the blood loss, it's like a ritual and and then not getting that end point with the menopause… it would be cut short for me.

It sounds like you're anticipating, with this potential hysterectomy, the grief for how your body would have gone into menopause if you didn’t have the operation?

That's definitely part of the grief and I've never thought about it before. When the hysterectomy was presented to me as an option, the doctor said, “oh well, you're not going to have kids anyway, what's the issue?” And I said, well, the issue is it's my choice and actually that's a big thing for you to take my womb from me. A womb is not just for creating children, it's so much more than that, it's part of who I am.

What does your womb mean to you?

This is gonna be a really strange thing to say. I guess it's a constant. I know what to expect with my womb being there. 25 years of menstruating and expecting the same thing every month. My womb is consistent. The pain isn’t linear, it can happen at any time in the month, but without fail, it will come. So, even if by some miracle my endometriosis magically disappears, then there would be the grief of losing pain.

I’m hearing that your womb has been the cause of a lot of pain throughout your life, but it's still also part of you. And it's known. I have a theory with chronic illness that one of the things healthy people find difficult to understand is the level of sheer uncertainty it can create, and therefore, how important the known aspects of our illnesses are to us, even if they appear to be “negative”. For example, my energy had been really low for a couple of years, and then I started working with a new doctor at the end of 2022. I got all of her initial recommendations, and she was like, “you're not going to recover from ME/CFS, but you're going to get better, you will improve”. And I was furious. Very few people could understand my fury, because they were like, “this is good news”. And I was like, no, you don't understand how hard I have worked to adapt to quite extreme circumstances. I have created this small, very small life, but it’s a life that is known to me and I worked so hard for it. And now all these opportunities and things are going to open up. And actually, I'm angry. I'm grieving the control I had in my small life and feeling like my hard work will be invalidated.

How you've said that, that is exactly the thing that I've felt. From my point of view, this has been 25 years of my life. And actually, that's going to take some getting used to. 

What other griefs are associated with chronic illness for you?

I would say, the grief of having a normal life without pain and coming to the realisation that it's likely I will have pain for the rest of my life. An example is being able to freely see friends and make plans, and knowing that it's going to be okay. Like, I'm going to see friends on Saturday. And then it gets to Saturday morning and you can't because you can't physically get out of bed. Then it's having to break that news to your friendship group and having to tell them yet again that I can't attend something and in my head it's like, oh gosh, they must hate me or they must think I'm lying. I often feel like all I talk about is my endometriosis, like I'm this horrible vacuum of negativity. I guess it's the grief of normalcy.

It's huge. Not being able to participate in life in the way that you see others participating. 

It is. Like, across the last year, I've made quite big life changes. I've gone sober and that's due to it being a trigger for my endometriosis and my anxiety, and it was probably one of the best decisions I've made. But I do love being social. I love going out. I loved going out for a drink and because my health is so important to me, I've cut that out. I think people underestimate the grief that comes with those lifestyle changes. It's really big, you know? Especially the negativity that comes with giving up alcohol, you don't realise until you give it up. And then you get, “what, why? Why've you given it up? Are you trying for a baby?” And I'm like, no, I've just decided to not drink anymore. One of my relationships was based around drinking, and we've really had to look at our friendship.

What is your relationship with chronic illness grief currently?

I always feel a sense of loss. I always feel like I've lost something, somewhere, and I can't exactly pinpoint it. It's like I've lost everything but nothing. I don’t have that sense of ease and easygoingness, for example, in work. For me, COVID and working from home was such an eye opener. Being able to work in comfort and take a rest when I need to was great. I need equipment; a desk, a comfortable chair that reclines so I can lift my legs, and having a rest space that, if I need to, I can go lay down for half an hour. Now, when I start a new job, care and wellbeing are so important to me. I have to do the research before on the organisation, the values that they carry, is care important to them, what do they think about being sick? And if that doesn't align, then I won't bother applying. So there's this thing of losing the freeness of being able to do any job without a second thought. That is a big grief because before COVID happened, I was working in London, I was probably in the office three days out of five. And actually I loved doing that. I loved the commute. I loved seeing people in the office and the daily chats that we'd have and I probably won't have that as much now. It’s never going to be like, I can do that with no repercussions. So that's a big loss.

You wrote to me that, as a woman of colour, it's important for you to share your story of chronic illness. Can you say more about that?

When I was diagnosed in 2017, I'd never heard about endometriosis. When I did my own research on Google and found Endometriosis UK, everything I was seeing was white. If I put endometriosis into Google, that was the first thing that came up. I had to really look for resources for women of colour. I found Endo Black, who are based in America. They were bringing out statistics that I hadn't seen before. When I was on Facebook as well, there was also groups there that I could go into and talk with other women who looked like me.

It’s important for me to share my story because I found it difficult to find the information I wanted. I decided to start my own Instagram about it. I’ve stopped that page now, but I still have a lot of people say to me, “oh, I think one of my close friends has got Endo, would you mind if I connect you?” I'll gladly talk about it and provide any support that I can. It's important for people who look like me to be vocal with the illnesses that we have because it takes so long to get diagnosed in the first place¹.

***Please be aware that we now talk explicitly about an accident involving severe burns, medical trauma and medical racism***

It feels really heavy too, being treated very differently in the hospital system, as a woman of colour. I had an accident in November 2020. I was on the sofa and my partner got my hot water bottle for me, which is a massive comfort when I’m in a flare up, having hot heat. I was wrapped up in a duvet and the hot water bottle burst and I couldn't get out. My partner had to try and get me out of the duvet. And I suffered really awful burns. They covered my stomach, the tops of my thighs, my vulva, and all the way around my stomach. It was very widespread. The doctor I saw, Eddie, who was Black African, was incredible. He said, “I'm gonna get you a chaperone because this is a very sensitive area”. I was then popped on a ward and Eddie came with a nurse and said, “we need to peel off all your skin before we can treat it”. I was so frightened. I remember saying to him, will this hurt, and he was like, “yes, it will be uncomfortable”. He was just completely honest with me. Then he left and the nurse came and she started to peel off my skin. I was in agony. I was screaming for her to stop and she just kept going quicker. And then Eddie ran in. He was like, “what's going on”? The nurse was like, “Oh, well, you know, I'm getting the skin off”. And he said, “you can see that she's in physical pain, what are you doing”? And she was like, “well you know, the quicker I can get it done, you know, then this won't hurt her”. And he said, “no. Have you even gone to see if she wants to gas and air?” And she was like, “well, it's not on this ward”. And he was like, “go find it now.” And I thought to myself, if my mum or my partner was there, they could have advocated for me. They couldn’t be there, because it was Covid and no one was allowed in the hospital with me.

The nurse should have stopped, but she didn't. She didn't have the consent to continue. She just thought that she knew best. Did she think because of how I look: “she can hold pain a lot better than other people”? That's exactly what I went to. Why wasn't she listening to me? What have I done wrong for her not to listen? Like, I'm not lying that I'm in pain. You're literally stripping my skin. And for her not to even stop and think, “oh, maybe I can get her some morphine”. And for a doctor to come in and be like “what's going on”? It was crazy. I have proof of being treated differently. I will never forget having the accident itself, that was horrific. But that's the thing that sticks in my mind is her peeling my burnt skin off of my body, me screaming in agony and her not stopping when I asked her to stop.

God, Jodie I'm so sorry, that’s horrific. There's a very persistent myth in medicine, right, that Black women experience less pain than white women?

Yep, yep, yep, yep. When the doctor came in, I think he felt it as well. He was like, “I don't understand what you're doing. There's gas and air literally down there. Why have you not gone and got it and made this process better for her?”

***Our conversation about Jodie’s accident ends here***

In your dream world, what would you like to change about how chronically ill people are supported in their grief?

Chronically ill people are grieving for something that they had previously but don't have anymore: lifestyle, work, friendships, relationships. For the people around them, it’s about being able to hold someone who's experiencing that. It's so rare to come across people who can do that. I have found it in MAIA, where I work. How they speak about illnesses, taking time and their supportiveness. I wish that everyone would be that gracious and open.

Following up our conversation over email, I asked Jodie about the connection between grief and her work at MAIA, a Black-led organisation exploring the connections between imagination and liberation (a topic rich enough for a whole other interview).

MAIA's exploration of liberation and the Black imagination intersects with grief and pain by delving into the deep emotional landscape shaped by systemic injustices. The experience of grief is not only personal but also communal, encompassing the pain of historical traumas and ongoing struggles. 

Through artistic expression and cultural narratives, MAIA addresses this intersection, highlighting how the Black imagination serves as a source of resilience and healing in the face of profound grief and pain. It becomes a means of confronting, processing, and transcending the burdens carried by the community.

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A few resources from Jodie:

• Endo Black

• The Endo Foundation

• Jodie’s Instagram post on healing from burns

• A collection of Jodie’s Instagram stories from across the years.

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1. On average, it takes 8 - 12 years to get an endometriosis diagnosis and Black women are 50% less likely to get diagnosed than white women. “The minority of black women who are diagnosed with endometriosis are diagnosed on average two and a half years later than white women. Black women are also less likely to receive endometriosis surgery – and if they do, are more likely to experience surgical complications afterwards”, Endometriosis: black women continue to receive poorer care for the condition.