The realities of living with endometriosis

Hi friends. It’s been a while. I’ve had this post in draft for months but decided it was probably time to hit publish. If you’re here for poetry or a short story, a book review or something uplifting, I’m afraid you came on the wrong day. I’m here for a rant. Fair warning: this post is going to be long and focused on less-than cheerful topics like chronic pain and medical inequalities. If you’re not here for that, feel free to move on to some happy news or explore the back catalogue. If you want to learn a bit about the realities of living with endometriosis, buckle in.

I want to preface my story by saying I come to this experience from an extremely privileged position. That privilege has come in all sorts of forms – medical, financial, social, geographical – you name it and I have at least some degree of privilege in it. I’m in pain right now and feeling a little bit sorry for myself. But mostly, I’m feeling a LOT angry on behalf of all those who do not have access to the same privileges as I do.

Endometriosis is a ‘women’s health issue’, which apparently makes it ‘niche’ (even though women are 51% of the population and 1 in 10 women have the condition https://www.who.int/news-room/fact-sheets/detail/endometriosis). And this means that there is very little understanding of the condition, woefully inadequate research and funding, extremely limited specialist care and treatment options that leave an awful lot to be desired. This impacts the experience of every single person with this condition (and many others). It is a universal disadvantage faced by those with endometriosis – one that is even further exacerbated if you also happen to be Black/Asian/Indigenous/trans/disabled/neurodiverse/poor/live in the global south/anything else that society already disadvantages you for.

Oh, and we also seem to have an issue with believing women’s pain (https://www.bbc.com/future/article/20180518-the-inequality-in-how-women-are-treated-for-pain ) to add to that jolly little lot.

One of the biggest misconceptions around endometriosis is that it is ‘just painful periods’. There is so much more involved in this disease.

I have had painful periods since I was 13. At 15, I was prescribed an oral contraceptive by my GP to help manage the symptoms. It worked okay. I still got painful periods but I could manage them more easily and carry on my day to day without too much trouble. Until I stopped taking the pill in my late 20s. Without it, the pain I experienced during my periods became much more severe. And then, over a period of months, the pain spread to other parts of my body – my thighs, around my ribs, my back, my hips. The pain also started to make appearances at other times during the month, not just when I was on my period. First, I started getting pain around the time of ovulation. Didn’t think much of it to begin with because this is apparently ‘normal’. Then the pain started appearing earlier and earlier in the week before my period. Then the pain would continue until a week after I stopped bleeding. Two years after I stopped taking the pill, I was in pain pretty much every day, to varying degrees.

During that time, my husband and I had also been trying to conceive. Looking back, I’m startled that it took us reaching 2 years without managing to get pregnant for me to go to the GP. I had just accepted the pain as my ‘normal’ without the pill.

(A quick note here: infertility is a little understood, emotionally fraught symptom of endometriosis. I’m not going to delve into it in this post because it is complex, a very raw, ongoing part of my journey and something that is deeply personal to more than just myself. There is a whole world of a different kind of pain that goes with this aspect. And I don’t have the words to talk about it right now.)

I am extremely grateful to my incredible GP who, upon hearing about my pain, immediately booked me in for scans and blood tests to start finding out what was going on. She was incredible. She prioritised my care in a way that I know far too many women do not experience. I have spoken to so many women who were dismissed by their GPs over and over again, told to take a paracetamol and just get on with it, told they were imagining their pain or that it couldn’t be that bad since they’d managed to get to the surgery or had waited for a doctors appointment rather than going to A&E. And then there are the women whose partners, friends or family have taken them to A&E, because the pain was so debilitating, only to be dismissed there as well. This is, in every conceivable way, not okay.

In my own story, what happened next was a series of internal scans, abdominal ultrasounds, blood tests and MRIs. It was incredibly frightening. At one scan, I was asked about the ‘growth on the left ovary’ which I had been previously unaware of. When I asked about it and what it meant, I was given no information and told I’d have to wait for the results. When I went to get my results, the images from the scan had been ‘misplaced’ and I had to undergo another (painful) internal scan and examination. From the scans they couldn’t tell what the growth was so I was put on a fast track for an MRI under the oncology department. Despite all the assurances that there was ‘nothing to be alarmed about’ I was terrified.

The multi-disciplinary team meeting that should have been reviewing my results did not go ahead as planned so I had to wait even longer for the results. Finally, 6 months after my initial visit to the doctor, the hospital confirmed that my tests showed that I had endometriosis, adenomyosis and endometriomas (endometrial cysts) on both ovaries. The endometrial adhesions were not only on my reproductive organs but also covering my bladder and bowel. They had also fused my ovaries together behind my uterus. My relief at being able to leave the oncology pathway was immediately replaced by a new set of fears and many, many questions. And very few answers. Because the condition is not high risk, I was no longer a high priority. I completely appreciate that this is necessary. But I was left floundering with nothing but a print out from the NHS website about ‘what is endometriosis’ and a long waiting time to speak to anyone about it.

I just want to pause here and say those six months waiting for answers felt like the longest time. In the scheme of things, it really wasn’t. The average time for receiving a diagnosis of endometriosis in the UK is 8 YEARS. Just let that sink in.

8 years.

8 years of being in pain.

8 years with no answers.

My 6 month wait felt hellish. But I was indescribably fortunate to have such a short wait.

I was also very, very privileged to have the opportunity to access private healthcare through my husband’s work health care scheme. When it was clear I would be waiting a long time to see a consultant about treatment options, we decided to go private. We had to pay a small amount for the excess plus some extra charges to cover additional tests, due to some other medical complications that I won’t bore you with, but we were paying a few hundred pounds rather than several thousand. I can’t even begin to express how lucky I feel to have had this privilege. Amongst the women I have spoken to through various endometriosis support groups, there are many for whom a few hundred pounds would be an unthinkable amount of money; many who have practically bankrupted themselves to pay for private treatment when the wait for treatment on the NHS was years; and many who can’t even begin to think about treatment because they are still waiting for a diagnosis.

My privilege stacked up again in that I found myself under the care of one of only a handful of endometriosis specialists in the country. For this I am forever grateful, especially given some of the stories of surgeries gone wrong or just not done well that have left women with no improvement or even worse pain than before. Laparoscopic excision is considered the gold standard treatment for endometriosis. But there are very few specialists to perform it. There are currently 63 endometriosis centres in the UK (a ‘centre’ being a hospital where there is a specialist surgeon), however the capacity in each centre varies significantly, with some having capacity to undertake surgery on less than 20 patients per year. There are around 5,000 women with severe endometriosis requiring treatment annually in the UK.

I was lucky enough to end up with one of these specialist surgeons who, in November 2019, alongside a general surgeon, removed the endometrial adhesions from my uterus, bowel, bladder, pouch of Douglas and ovaries, along with the ovarian cysts. During the surgery, they took pictures and video which show just how completely riddled with endometriosis the organs in my pelvic region were, and the remarkable job they did of removing them. One of the ovarian cysts they removed was the size of an orange. For perspective, ovaries are about the size of a grape.

It took about 3 months for me to recover from the surgery. I have spoken to women who have not been able to proceed with their planned surgery because their workplaces will not grant them even the day of the surgery as paid medical leave. Because, technically, the surgery is ‘elective’. This is major abdominal surgery that is often the only remaining treatment option for the chronic pain caused by endometriosis. It is a last resort. I was privileged to be in a work place where I received paid medical leave not just for the surgery but for however long I needed to recover, followed by a transitioned return to work that allowed me to work from home whilst I continued to build my strength. This was a privilege. But let’s be clear: it shouldn’t be. This should be standard. No-one should have to choose between treating their pain or putting food on the table. Yes, in the UK, statutory sick pay exists. No, it is not enough. Not for those already struggling financially.

For about 7 months after the surgery, I only got pain during my period and it was much more manageable. It was such a relief to be able to go day to day without pain! After 7 months I did start to get pain at other times during the month again – not much, but twinges did start to appear. I’m now 2 and a half years post surgery and, whilst it did definitely help and I’m still in a better place than I was pre-surgery, my pain is has ticked back up again.

About a week before my period is due, I start to get cramping in the right side of my pelvis. I have another cyst on my right ovary now so I suspect that is partially to blame. The pelvic cramping is then joined by pain that radiates down the front of my thighs – this can be anything from a sharp shooting pain to a dull ache – and a variety of other pains that change from month to month. This month, my joints – especially in my hands and feet – feel like they’re on fire. Yep, it makes my hands and feet hurt. Why? Who even knows.

This is not ‘just a bad period’. This is a whole body disease.

When my period arrives, whatever pain I have been feeling doubles (on a good month) or quadruples (on a bad one). My whole body is taken over by a pervasive ache, from the top of my head to the tips of my fingers and the soles of my feet, punctured by sharp twisting pains in my abdomen. It feels a little like having a bad bout of the flu. Whilst simultaneously having your internal organs shredded. It takes a rotation of painkillers, heat packs, ice packs and a TENS machine to manage it. Each month, these symptoms will be severe for 3-4 days, during which just moving around the house is a mammoth undertaking. Then they will ease to more manageable levels but will linger for a week. I might get a few days complete relief on a good month before the ovulation pain kicks in. This is a lesser pain, usually an achy pelvis with a periodic sharp pain on one side, and will last a few days. Then I’ll have a week where I’m practically pain free until the pre-period pains rock around again.

I am lucky.

I have had access to exceptional care, support from my family and my workplace that has helped me manage my symptoms. I also know that, in comparison to many others, my pain is not that severe. I have never had to go to A&E and there is usually only 1 day per month when I genuinely struggle to move. The periods of constant low level pain are difficult mostly because it is distracting and uncomfortable to have a background ache that just doesn’t go away. But in terms of severity of pain, it’s manageable and largely allows me to carry on with my life. But there are many people for whom their pain is completely debilitating, forcing them to miss school, leave their jobs and diminishing their quality of life significantly.

Just writing out this experience leaves me feeling exhausted and it reminds me just how much my body and mind have been through the last few years. And, again, I’m reminded that as far as experiences of endometriosis go I am without a doubt one of the lucky ones. So what the hell do the unlucky ones have to deal with?!

It simply should not be the case that so many people are left to live in pain. When are we going to do something about it?

If you’d like to understand more about endometriosis and/or support a brilliant organisation working hard to make living with this condition more bearable, I highly recommend checking out Endometriosis UK: https://www.endometriosis-uk.org

2 thoughts on “The realities of living with endometriosis

  1. Jenny, I am so sad to read this but so proud of you for your bravery, compassion and tenacity. The tenacity to carry on through this horrendous journey and the bravery and compassion to share such a difficult personal issue so publicly. I am always here. Lyfe xxxx

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