Endometriosis: a lonely illness

Written By Saffiyah Khalique
Infographic with statistics on Endometriosis developed by Kaye Sedgwick

Originally published on Medium in August 2023

I thought hard about how to define the journey of diagnosis, the physical pain and mental toll of endometriosis, and the one thing they all had in common — how alone you can feel in it.

Endometriosis is the second most common gynaecological illness in the UK, yet it takes on average 8 years to obtain a diagnosis from the first time symptoms present themselves. For me, that rings true I experienced painful and heavy periods around age 16/17, I had a laparoscopy, the gold standard surgery for diagnosis and you can treat at the same time if it is easy to find and hasn’t ravaged your body yet. But I didn’t see a specialist back then, I did not know the value that has for an accurate diagnosis. I was told it was just IBS and to take the pill for the bleeding. Yet, at age 24, in November 2022, I was hit with intense back pain and cramping, which continue outside of my period.

“I knew something was truly wrong.”

Before I take you on my journey, you need to understand the condition itself. Endometriosis where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way as those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. During the menstrual cycle, the body goes through hormonal changes each month. Hormones are naturally released which cause the lining of the womb to increase in preparation for a fertilized egg. If pregnancy does not occur, this lining will break down and bleed — this is then released from the body as a period.

In endometriosis, cells similar to the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain, and the formation of scar tissue.

The longer it is left, the more time this scar tissue has to grow and spread, to fuse uteruses to bowels, to consider a possible loss of ovaries and tubes, to make a simple surgery a much more complex one. It can spread to the liver, diaphragm, basically anywhere in the body.

Why does this happen? We don’t really know. There are several possible theories, from retrograde menstruation and immune dysfunction to environment and genetics, but no true answers. Another hurdle in the diagnosis and treatment journey.

Going to war: navigating the healthcare system

Trying to obtain an endometriosis diagnosis is like going to war. You have to be armed with knowledge about the illness, you have to know the disease inside and out, know what treatments are the ‘gold standards’ and know the doctors cannot deny you medical treatment.

One of the hardest hurdles in obtaining both a diagnosis and treatment for endometriosis is trying to convince medical professionals your pain is true and it is not just ‘bad period pain,’ a ‘UTI,’ ‘IBS’ or ‘anxiety.’ Too often women are misdiagnosed because the symptoms of endometriosis are so vague and could be many conditions, the very fact that you can have both these other conditions and endometriosis.

It is also a very pesky disease and does not show up on ultrasound scans, it can show on MRIs but that is usually in the case of deep infiltrating endometriosis, and even then scans are not the most reliable and require someone specialized in endometriosis to spot it.

Then there is the ability to describe and vocalise pain. How do you truly get someone to understand what it is like? How do you know what to say to be listened to?

Everyone’s understanding of pain is different and in this case, can be extremely gendered. From male doctors having no experience of period pain to female doctors equating their own experience of period pain to that of others. Numbers are useless because I was functional on an 8/10, and from times my 10/10 would be reduced to a level 8 when a new flare-up appeared my value for 10 changed.

As I recently learned, a patient submitted their scans to an endometriosis specialised doctor and he could point out how much and where it was when previously this patient was told their scan was ‘clear.’

It is so hard because you first have to convince your GP that your pain is real and get a referral to gynaecology. Initially, when I began my journey for diagnosis at 17, I had no idea this was a thing, I had no idea that many regular gynaecologists can easily miss endometriosis in surgery. This is largely due to the condition being under-researched and poorly understood, especially 8 years ago. So, now I think if I had seen a specialist back then, would I have been treated earlier, would I have had better management and it could have been prevented from getting as bad as it had done this year?

The Endometriosis UK Facebook group has been a lifeline for me during this experience, the wealth of advice on how to get doctors to listen to you, how you can complain if you are treated poorly, how you have the right to choose treatment, and the wealth of pain relief tips.

Luckily, the GPs I have seen in the last year have been amazing, they took me seriously, did everything they could to chase my NHS referral, and had 30-minute phone calls with me to find out what pain management options they could offer me that would both help with pain but would not be too addictive.

Now, there is more research occurring in Europe and Asia, working on diagnostics and treatments, with clinical trials in Edinburgh right now.

However, this still does not reflect the current healthcare system. I held off visiting A&E for a very long time, until one night in March I was in tears, my already strong pain medication had done nothing for me and my body was in panic mode. Even then, when I could barely walk, couldn’t put my own shoes on, and had to be wheeled into the hospital, I had to beg and plead with the out-of-hours nurse that saw me let me see a gynae doctor. I was told because I refused to take the anti-inflammatory medication she was offering, the very medication my body cannot tolerate and would make my pain worse, that I would have to go home. I had never felt so failed by the healthcare system. My medical history was not listened to and I was made to feel like I was out of my mind.

The begging and yelling worked, and I saw a gynaecologist eventually. To be told what I already know, I need a laparoscopy and they can’t send me home with morphine, so I just have to wait. Another told me it was just a water infection and to take some antibiotics and I should be fine (I wasn’t), disregarding the pain I had been experiencing months earlier, which showed no signs of a water infection. An infection that could have been caused by the endometriosis. At that point, after being awake for almost 24 hours I just wanted to go home, and I would just ride out this flare-up until mentally I could cope with this new increased level of pain.

At that point, I felt defeated and alone. I felt like it was just going to an uphill battle after another to get help, and that is when I felt alone in the medical process. This is why I then took my GPs advice to see a private consultant, to see someone who has years of experience and actually knows the condition inside and out.

After this, I sought help from a private consultant specializing in endometriosis after being urged to by my GP so I could have some answers and a pain management plan, while I waited for NHS surgery. It was the first time I felt heard and listened to by a gynaecologist. He even noted that being put on the pill to control bleeding from 17 was a problem and should have been looked at. He gave me a letter that made my appointment with the NHS so much easier and I didn’t have to fight and beg for surgery and was able to hold off being given more hormonal treatment, which is pushed onto women so much.

Hormonal treatment that is not a cure, that is not real treatment but a crappy bandage ignoring the real condition. Not to mention the horrible side effects they can have on the body and mind.

all the pain management methods i tried and the meds i remembered :)

April and May passed, and my mental health hit a true rock bottom. I was running out of painkiller options that wouldn’t turn me into a ghost, every day it was getting worse and I simply was wishing to die because the pain was that unbearable. After talking it through with my partner and telling him this, he helped me figure out a way I could afford private surgery because the current NHS surgical waitlist for gynaecology in my area was over a year, and honestly, I did not have it in me mentally to last that long.

With help from him and my parents, I was able to arrange surgery for July and it meant June was not as hellish. Every time I had a flare-up, I could just look to surgery which would help make things feel easier on the mind. I knew answers, whether they were ones I wanted to hear or not, they were only a few weeks away.

The loneliness of an invisible illness

Before I go into the surgery and diagnosis, I wanted to talk about what it is like to live with the illness. The one thing that ties this and the medical journey together is that it felt incredibly lonely. Now, I had a great support system, I had the most loving and caring partner who was essentially my carer the last year. I had my sister and my honorary sister, Katie, who would constantly check in on me, visit me when I reached the stages where I was not able to go out as much and checked in every day from surgery to recovery. They held me and took care of me when I was unable to care for myself, physically and emotionally.

I was also incredibly lucky to have a supportive work team, to have a team that checked in and made sure I was okay. A team that picked up my work if a flare-up happened, to feel comfortable talking about the illness and how it was affecting me. The kind words and support the whole way. Especially after reading cases where women were forced out of jobs because they took too much sick leave or felt like they had to quit because their health needs could not be accommodated.

But no amount of support doesn’t stop me from feeling alone in this. The pain is not visible so no one can see the cramping, the aches, the stabbing and squeezing. On top of that, nausea, vomiting, headaches, fevers, acne and so much more. Feeling like my body is hellbent on destroying itself.

“It was soul destroying and it broke my spirit.”

The loss of independence when going to the bathroom and brushing my teeth was agonizing. Not being able to work, having to overthink every single social plan to see if it would be accommodating to me, saying no to a lot of things because I never know how my body is going to react and I don’t want friends or family to see me completely and utterly broken.

I was forced to think about my own fertility. I had no idea how bad the damage would be inside. Would I have to consider having children now in case they need to remove an ovary, so try for children now and then have it/them removed? My chances for a successful pregnancy could be lowered, my chance for miscarriage higher, and the whole element of choice could be gone. Infertility in women with endometriosis is 30–50%, and I with surgery would be faced with the answers to my own fertility, or lack thereof. So many thoughts, so many stressful and big thoughts all of the time, it was exhausting.

I found myself dissociating a lot, sometimes I knew I could feel the pain but it was so intense I just felt like I was looking at myself in the curled-up dark room, tears streaming down hoping the painkillers would work this time and slowly waiting until I eventually pass out from the pain. From about March onwards, the thoughts of death increased to only flare-ups, to happening all day every day. I’d be watching tv, working, out with friends, you name it, and that is all I could think because my body was in so much pain and at that time I had no answers to why and no way to stop it.

“I felt like a shell of a person.”

I became lonely because of my physical impairments, rendered housebound mostly or unable to go anywhere without my partner because he is the only one that is able to help me when I am not able to help myself. I felt lonely during the illness because it does not compare to normal period cramps, so unless you have endometriosis or fibroids, it is very hard to understand how debilitating this illness can be.

Like I said before, the Endometriosis Support Group, was a lifeline to me. It helped me feel understood, I could get advice from women who had been through the process, and with every new symptom that appeared I could seek advice on how to manage it.

It also broke my heart hearing the stories of women who have been fighting for 10+ years for a diagnosis, for mums seeking help for their 14-year-old daughters, the women who had been laughed at by doctors and told to get pregnant and that will ‘solve’ their problems. I am not exaggerating here, I have actually read this. It is sickening that women are being treated like this, it creates such an environment of fear and anxiety that you won’t be listened to and end up putting off seeking treatment.

‘I’m not crazy’: diagnosis received

FINALLY!

July 17th — the day I finally got my answers.

I ended up having surgery with the private consultant I saw after my A&E trip because if I was paying for treatment I wanted someone experienced, but most importantly, someone I trusted. I also wanted to make sure I was receiving excision, which is where the endometriosis is cut away, instead of ablation where it is burnt away and has a higher chance of coming back.

The two days prior I felt incredibly anxious and had several nightmares. I was worried at this point if they don’t find anything, what do I do then and if they do, what if it has completely ravaged my body and I have to think about the loss of ovaries or a hysterectomy, or even surgery can’t fix things because it is too complicated and could damage other organs.

The actual day went quicker than I expected, I was first on the surgical list so I didn’t have the time to worry about anything. The nurse prepped me really quickly and within an hour I was in the remove with the anaesthetist, talking about cats until I was suddenly out.

Once I came around after the surgery, I couldn’t open my eyes and barely speak.

“I heard my surgeon say ‘We found endometriosis and we got it,’ and in my hazy state, all I could think was ‘I’m not crazy,’ over and over.”

The nurses told me again when I felt a little more awake and gave me more of the sweet, sweet morphine as I began to feel the pains of the incisions.

From the operating room to back to the hospital bed, it was 2 1/2 hours. I was up fairly quickly to use the bathroom, with the help of the wonderful nurses, and in and out of sleep, as the anaesthetic wore off, eating pieces of jam and toast.

I saw the consultant before I left and he talked me through the diagnosis, telling me it was the best-case scenario. They found endometriosis and it was easy to remove, my ovaries etc are all healthy and my fertility is unaffected, and that he’ll see me in a month to check my progress.

I felt so relieved, I was able to tell my loved ones I am going to be okay and they will soon see a version of me they recognise. I had a weird high of energy, a mixture of painkillers and the high of treatment and getting my life back, I was walking around more than I should, I had an appetite again, and felt joy in my voice.

Recovery was tough, the first week I really struggled and I cried a LOT, sleeping was uncomfortable and daily tasks were a chore. However, I had immediate relief from having control over my bladder again and sleeping through the night again.

Each day there was small progress, and by week three I was working in the office again and managed to walk to the local pub for quiz night, something I had not been able since January if not before that. So I am really damn proud of myself.

Almost a month later, I am feeling more like myself. I chose this photo because a friend of mine said I looked happy and healthy, and for once I really did feel it. It is the first time since November 2022, I have truly been pain-free. I still have a way to go until I feel at the peak of physical health again because I have been so sedentary for so long, but I am having little wins every week.

I try not to think about how there is no cure and this is something I will have for the rest of my life. That it is highly likely I will have to have several surgeries in my life to treat regrowth. What I think about are the cases where it doesn’t come back, where it takes 2–10 years to noticeably come back, all of that time where I can be well again. If it does come back, I know what that pain is, I know how to navigate the healthcare system and I have that on-paper diagnosis to get the help I need.

I am extremely grateful to my wonderful boyfriend for taking care of me, supporting me, and loving me during this horrible time. To my parents, my sister, and my best girl, Katie for being the emotional support I needed. To my GPs for listening to me and supporting me as much as they could, to Dr. Rowlands, and all the nurses that took care of me during and after surgery. And of course, honourable mention to my adopted cat Tiffany, for keeping me company when I was mostly housebound and following me everywhere after hospital visits and post-surgery.

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Saffiyah Khalique
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