Life 5 years after Endometriosis surgery
An imperfect account of change
5 years ago today, I had surgery to treat Endometriosis, a debilitating painful condition I’d been living with for years. In these last 5 years, gradually and significantly, my life has changed. It’s not a straightforward before and after, surgery has been part of a much bigger picture. But at this time of year, I often reflect on how things have changed since that surgery. It has been half a decade after all.
This is not a hero’s journey where I fall and then rise to glory. I will not try to sell you anything. This is not a to-do list of how to ‘recover’ from Endometriosis. Although the condition can be managed, cure currently isn’t possible.
Confronting the genuine conditions of our lives
I am not particularly interested in the identity of being an ‘Endometriosis Warrior’. Instead, I am interested in paying attention to, and advocating from, the condition(s) of my life. This piece will try to give an honest, if limited, account of my experiences. As the philosopher and writer Simone de Beauvoir reminds us:
“It is in the knowledge of the genuine conditions of our lives that we must draw our strength to live and our reasons for living”
We all have things in our lives that are fundamental conditions or constraints that frame our experiences. We are trying to know the conditions we live in, and trying to work out how much agency we have to change those conditions. I admire it in others when they are honest about the world, when they do not muffle themselves to their realities and pretend things are okay when they aren’t. They name what is. The naming itself is powerful, even if you don’t know what comes next.
When you live with a chronic health condition, Simone De Beauvoir’s call to know the genuine conditions of our lives can be taken quite literally. For example Endometriosis - it’s a biological condition, but it could be a different condition if it was approached differently in society. If I got different support, resources and had more power to access what I needed Endometriosis would be a different condition.
Endometriosis has been a fundamental condition of my life. It has been conditioning the contours of all aspects of my life. It has fundamentally shaken my trust in my body and in the world, and I am working hard to rebuild that trust.
I am very strong, not because of Endometriosis, not despite it, but in some wild dance with it.
Searching for wide ranging testimonies
At the most difficult points, I was searching stories from other people who had been through the same thing. I found helpful advice and insights from others. However, for years I didn’t hear from a single person whose experience had measurably improved. I heard many stories where things that were supposed to help didn’t, where so called ‘treatment’ worsened peoples’ lives, where peoples’ condition progressed over time. These stories are all real, essential to be told and to be heard. They are all a necessary counterweight to the lie that medicine is doing all it can. They are a true part of the picture. They helped me feel less alone when things weren’t improving for me. These stories tell us that people are being failed by medicine and by other institutions. Stories like these are needed to get political attention and to create change.
But experiences of Endometriosis vary massively. I needed to hear other stories too. I needed to hear that things might just get better. Even a little bit. This is not about asking people to pretend things are okay when they’re not, forcing people into positivity or to be palatable, but rather about having a broad range of stories. It’s possible that when a person is doing better, they may want to distance themselves from their previous suffering and so may be less likely to share their story, at least that is how I have sometimes felt.
I have been scared to write this piece. Scared that people will treat me with pity or imagine this experience is all that I am. Scared that people will feel I am dismissing their experiences. Scared that I may be exposing myself to ableist scrutiny. I know it’s not accurate but there is also the fear that somehow I’ll jinx it if I say things are better now. Scared things could get worse again, and I would have provided false hope.
But I can only speak in this moment as things are, as I am. It has been hard to write this. But overall it is worse, for me and how I feel about my fear, not to speak out. It is important to me to share my experience of change in my condition, in case it is of help to anyone else.
“and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid”
Audre Lorde - A Litany for Survival
Remembering things at their worst
For a few years years leading up to the surgery, my suffering was extreme. I was in chronic agonising pain nearly all day every day. Waking up multiple times a night. This pain worsened during my period and ovulation, often during and after sex, during commuting, from standing to cook a meal, walking and after strenuous activity or stress.
An average day was preserving through, following the advice of doctors who said told distraction was good for pain management, but finding myself worn out and exhausted, regularly stopping in bathrooms to cry and scream in agony into my fist to silence it. Sometimes I’d be on my way somewhere and have to sit down on the pavement to regain capacity to get going again. I’d take the tube to work and its movement would set off the pain. It was an unthinkable thing unless I had a seat. I’d get home and try to find some comfortable way to lay down. This level of suffering isn’t inevitable, my hope beyond hope is that we get better at treating the condition and caring for people experiencing what I experienced.
Despite how much I was suffering, somehow I carried on with my life, continuing to go to my job, continuing to show up in my life. This is not a flex, nor something to derive inspiration from. In retrospect, I think it would have been better to do far less than I did. I did cut down my working hours. But this was before the pandemic and then remote working was harder to do. (I found when I did work from home, that I would be left out of important conversations at work). And, at that point I didn’t feel I had the option to just stop working completely.
If someone had this level of pain for a day or two, they’d probably take time off work. (Endometriosis pain has been compared to the pain of giving birth, and you’d not expect someone to carry on through that.) But the thing about an unpredictable chronic illness is time off sick doesn’t make it go away, it may reduce the symptoms but it’s still there. So you feel you have to carry on.
I also felt I didn’t want being ill to steal everything from me, to steal my spark and drive. I feel complicated things about this, because in my heart of hearts, I know that I am just as sparkly if I rest and do less, but a combination of internalised and real ableism made me feel like a smaller person when I wasn’t ‘out in the world’ striving. But I think this was muddy misattribution of my personal responsibility in the world. I think this was me trying to figure out though what would ‘give me life’. Since, my spark had been damped by the pain but mostly by the lack of treatment and care. I was trying to follow the flickers of agency I felt I still had.
My work was about justice in health related issues. At my worst with my pain I was literally organising a conference called ‘Health Justice’. I’d do stint laying on the office floor in pain or weeping in the bathrooms, then get back to organising the room booking for the event. I have to laugh. I don’t think it is all bad that I worked, I think it was my way, at that time, to channel my rage into something that felt meaningful. I felt I was fighting for things to be different for other people. It’s hard to say this, but I am not sure it was worth it. Someone else could have done that job whilst I did the job of managing the impossible pain. Having said that, I do believe that disabled people should be given the reasonable adjustments to take part in meaningful work, and I found ways to make adjustments that did help a bit.
I know now that if my symptoms were what they once were, I would try to get myself signed off sick, or reduce my hours even further. I like to think I would notice what I need and take it. But sometimes when you’re in it, you can’t quite get the perspective to see how bad it really is. I can’t believe I worked as hard as I did with the symptoms I had. But it sort of became my normal, to be in agony all the time and ‘just get on’ with life. Even at times when I thought I’d learnt to slow down and do way less, I was still trying to achieve a lot.
There is also the question of finances. I was only able to cut my hours at my job because my rent was cheap at the time, I was staying with a friend. But since 2019 I have been working part time, meaning over the last 5 years, I have lost thousands in potential income. I can just about make this work, because I am a decade into my career so I can get slightly higher paying jobs where working part time is just about feasible. This wouldn’t have been possible at the start of my career, and wouldn’t be possible for many people who do not have some of the access to privilege that I have had. Technically there are disability benefits, but the process is so inaccessible and punitive.
Building hope by paying attention to change
Chronic illness can feel like a painful groundhog day, seeing the same day playing out horrifically over and over. It can be hard to trust that change will happen. It’s a little bit like how in winter it can feel impossible to remember that you once felt warm. Except, in the case of chronic illness, you do not know if summer will ever come back.
For a long time, when my suffering was so painful, I often thought that if things didn’t change, I would need a way out, this led to a lot of suicidal thoughts.
“In the past when I say I have wanted to die, what I have meant is that I wanted someone to offer me a way to have a different life” -
in I Hope We Choose Love: A Trans Girl’s Notes from the End of the World
I tried incredibly hard to offer myself a different life that worked with my limitations. This is something I still do every day. I try to offer myself, and people around me, a different life. A life in which being chronically ill is considered with care.
In paying attention to the small changes, for better and worse, I found some sense of ‘the genuine conditions of my life’ and the ‘strength to go on living’. It is important to notice the texture of each day, to notice its change. I learnt through pain management meditation, the exact precise nature of my pain, where it stopped and started. This helped me to understand that it was changing, even though it was chronic. Which may seem counterintuitive, but it is essential.
After years of being dismissed by medical professionals, in Spring 2019, I had an ‘ablation’ surgery: this is a type done by a gynaecological surgeon but not an Endometriosis specialist. I was lead to believe this would transform things, but it made things worse. At the same time I was also on a contraceptive pill, which put me into a perpetual state of PMS like symptoms, it was awful. Neither of these things helped, they both made things so much worse.
If you are told something will help and then it fails to do so, it can be profoundly shaking. It left me feeling that I was beyond help, that my body was failing and that I was being failed by the system. It was very hard to trust that anything would help.
I had to radically alter my definition of hope. I had to hope that I could live well with how things were right now - with the genuine conditions of my life. I turned towards the work of disability justice activists, who value people as they are right now in the bodyminds they are in. Not by seeking out cure but seeking out ways to be with what is. They showed me that my life could be beautiful and full of love and care, even when I was suffering immensely. It showed me intimacy, joy and pleasure was possible, uniquely profoundly possible, in my bodymind in pain. They taught me the idea of a ‘bodymind’, rather than a body or a mind being two separate things. They showed me that the goal wasn’t about arriving at a perfect able body, or going back to a fantasy of ‘before’ illness, but instead about changing the world to meet me where I was at. That is, both changing my own little world, and trying to change the world at large to be more accessible. This fundamentally saved me. This offered me “a way to have a different life”. This held me as I waited for the treatment I needed, and allowed me to imagine a life even if the treatment didn’t work.
Needing and receiving medical care
I also needed better quality medical attention. And fortunately, the second surgery, an ‘excision’ surgery by an Endometriosis specialist, in December 2019 was different. I should mention I had to wait a long time, these specialist surgeons are rare and in high demand in the NHS. Whilst the surgery didn’t help over night, things have been very different since. It took probably about 6 months to a year after the surgery and the implant of the Mirena coil for me to ‘recover’ and for things to settle.
Nothing got better overnight. It was a little worse before it was better. But the surgery to remove some of the Endometriosis, combined with various other things (the right contraception for me, pelvic health physiotherapy, an anti-inflammatory diet, targeted therapy, somatic work, massage, mindfulness, pain management support, tailored movement and exercise plans, changes to my lifestyle and my career, the support of all those in my care networks, among other things) have contributed to a very different life. In doing this, I have lost a few relationships with people whose approach to life is not compatible with my limits and needs, but I have also gained a closeness to other people as hopefully they have felt safe to be themselves, in sickness and health, with me.
Each of those things in the brackets above has addressed different parts of the condition of my life, its been the work of almost a decade, to bring together a care plan for myself which accounts for my needs. My life is a care plan. I’ve come to understand this as rich powerful knowledge and have supported other people to create care plans for themselves too.
Living my life these days
My experience is so different now than it was five years ago, or even 2 years ago. Whilst I still have Endometriosis and Adenomyosis (at the moment both cannot be cured only managed), most of the symptoms are significantly reduced and manageable. I don’t know how long it will stay this way, but I am trying to relish this relative ease whilst it is here.
In the last couple of years, it is extremely rare that I wake up in the night in endo pain, it’s happened maybe a handful of times. The Mirena coil stops me from having the bleed part of periods, and prevents endo from building up, so I have very little period pain. I can enjoy a lot more of my life and I feel less of a need to escape. Most of the time, I want to be here. It is easier to access joy, as I am in less pain. I can enjoy sex with very little pain. I can stand up to cook, I cook meals for myself and my housemates most evenings, the stone cold floor would have wrecked me before. I can get on public transport without it causing a flareup. I can work without pain radiating through me. I can walk and cycle. I can do low key exercise.
I still occasionally have pain flare ups, but they don’t last long, and I am more equipped to get back to my baseline. My relationship to the symptoms when they do arise has been changing too, this is a work in progress. I live in ways that would have been impossible for me to imagine 5 years ago.
Living with the resonating knock on effects
Although my Endometriosis symptoms are reduced, I am still ill in many ways. Every time I think I have shaken off this sense of being someone who is chronically ill, I find a new challenge arises. I am quite worn out and often find I get run down. This is most likely the culminative effect of years of health issues. I also contracted long covid a few years ago and still feel some of its effects. I have some longstanding mental health difficulties, having recently been diagnosed with PMDD and PTSD, and have some challenges around food.
My experiences with Endometriosis have been traumatic, and there is a lot of loss and grief. Even though my symptoms have improved, my bodymind doesn’t always register that. According to my research (which this year I had this confirmed by the NHS physiotherapists and GPs) years of chronic pain has sensitised my nervous system. Meaning it is primed for pain. It is ready to react strongly to any pain. Something you perhaps wouldn’t expect is the knock on effect, other pain in other seemingly unrelated places. Tension in my body gets held onto longer than it used to. For example, I developed chronic pain based off ‘simple’ tension in my chest, which was muscular, because my body was primed to hold onto pain.
I’m working to discern the difference between necessary pain which signals actual risk, and the pain which is overprotective in proportion to risk. It’s tricky, balancing listening to your body, taking it seriously but also not too seriously at once, especially when you haven’t been taken seriously in the past. You’ve been told you’re the bo(d)y who cries wolf, yet there was an actual wolf. And now you’re not sure if there is a wolf or just dogs wanting to offer you protection.
“Know the wolves that hunt you
In time, they will be the dogs that bring your slippers
Love them right and you will feel them kiss you when they come to bite
Hot snouts digging out your cuddles with their bloody muzzles”- Kae Tempest, Hold Your Own
People say ‘what doesn't kill you makes you stronger’. And I’d say, ‘what doesn’t kill you makes your nervous system hypersensitive to pain and warps your relationship with your body and your world, in a way that you have to really dedicate yourself to changing, which you do, so in this way you are strong, but sometimes people think you aren’t trying hard enough but that says more about how your pain upsets them etc etc etc’. But hey, that doesn’t fit so well into a song.
Over the years though, I have been teaching my nervous system to regulate. I have come a long way. I haven’t done this alone, it has been through therapy, exercises and the support of the people closest to me. Just last month, I finally got to see a pain management specialist on the NHS, after asking for years. This has been making a difference.
This isn’t the end of the story, and it isn’t everything.
Thank you
To everyone who I’ve encountered along the way, whether you are in my life now or not. I am immensely grateful for the ways that you have stood alongside me, held me through my pain and cared for me throughout the years.
Today I talked to my friend Sarah
On the wall close to my house
We talked about how strange the feeling
To take my insides and put them out
Thank you friends and strangers
For your gentleness with me
It is a gift that keeps me floating
Towards a future I can’t see
Flock of Dimes - Thank you Friends and Strangers
With love and thanks,
Rachel
Please share this with anyone who may find it helpful.
If you’d like to find out more, or are concerned about how to talk to your doctor or get the support you need, Endometriosis UK provide resources and support.
So much of this is so relatable. I hope that if/when I am in in much pain again that I will be able to give myself more space and grace to be Ill. Beautiful writing.
This is wonderfully expressed, thank you for writing it and for all your careful attention to the things, within and without, personal and communal and structural, that help make a good life possible