Beth’s Experience With Endometriosis

March was Endometriosis Awareness month and funnily enough it was the month I finally had my excision surgery for a chronic condition I’ve suffered with for years. 

Hi, I’m Beth – you might know me from occasionally popping up on the HATW socials, from my photography work or you might be stumbling across this blog for the first time. However you got here I’m glad you did! Let’s get into what endometriosis is, how it can affect you & if you (or a loved one) is affected how to help cope / what’s helped me cope. 

What is Endometriosis?

Endometriosis is a chronic disorder that affects 1 in 10 people who menstruate. 

Despite it affecting 1.5 million people in the UK and about 200 million worldwide, there’s very little awareness of what endometriosis actually is and how to manage it, I guess that’s why I’m writing this blog today. Menstrual conditions in general are heavily underfunded across the world and on average, in the UK, it takes around 7.5 years from first seeing your GP about symptoms to the diagnosis of endometriosis. (If you’re interested; I got my facts and stats from h e r e)

Ok lets get a bit sciency now – Endometriosis is a condition where the cells similar to the lining in the uterus (that sheds when you menstruate) starts to grow in other places of the body, including the ovaries, bowels, fallopian tubes, your abdominal wall, colon and basically anywhere in the body! This can cause inflammation, pain & creates scar tissue on organs – which obviously can create a lot of pain. 

The pain is just one part of the larger picture, but it’s important to know the pain can happen at any point during your cycle, but most often at the time of menstruation. Honestly, the pain is horrific & I wouldn’t wish it upon anyone. They actually say that it’s worse than having a baby – can you imagine! Aside from the pain theres a variety of other areas which can effect your life, some of the most common are:

• Fatigue
• Depression & feelings of isolation / loneliness
• Bloating
• Breast Pain
• Painful intercourse
• Urination & Bowel Pain
• Digestive Problems
• Heavy Bleeding
• Food intolerance 
• Irregular cycles
• Back pain
• Infertility. 

My experience with Endometriosis

It’s difficult to remember a time when I wasn’t in pain or wasn’t experiencing some kind of issue on a daily basis. The pain began when I first started menstruation & I remember thinking “wow this is a lot more painful than I expected it to be” but I thought it was just one of those parts of growing up and becoming a woman. I remember trying to talk to my PE teacher about the pain, but she said it was normal & guess what, I had to do PE anyway! I started to really notice the pain & realise that something was wrong when I went away to University. My housemates and boyfriend would often find me crying and lying on the bathroom floor being sick from the pain. I ended up going to my GP again to explain the issue, but I was quickly brushed off with going on hormonal contraception. It didn’t help. 

The years went on like this and in 2017 I finally paid to see a gynaecologist to try and figure out what was wrong with me. At this point I had probably been on at least 4 different types of contraception and nothing was working – I was still in pain and with each trip they would blame it on something else. I thought this would change when I saw the gynaecologist – he did checks, scans & ultimately said I was ‘too young’ to have a laparoscopy – the only way I could get a diagnosis of endometriosis. Across the 2+ years I saw him we tried hormonal contraception (again urgh!) and then I came off all hormonal tablets to see how my body reacted. It got worse. He then blamed it on IBS and told me I should think about having a baby as it can be a cure. Let me just tell you – it cannot cure endometriosis and should not ever be seen as a cure. Having a baby will temporarily help because when you’re pregnant your body won’t menstruate. 

I felt deflated, upset and just thought that maybe this was something I just have to deal with. As the time went on I just got more deflated, I stopped doing the things I liked & felt hopeless. Why is this happening to me? Is this pain normal? Maybe I was the problem? I kept going back to the GP where they told me the pain was just depression and anxiety, to which they immediately tried to put me on antidepressants. I spoke to my family about it and started implementing positive changes to my life – to see if it was depression causing the pain or something else. 

What helped me cope

I totally get it, the pain is so bad you don’t want to get out of bed, trust me, I’ve been there. I spent so much of my life wallowing in my own self-pity, staying in bed all day, not doing anything and letting the pain control me. I wasn’t being fair on myself. One day I was like “right, I’ve had enough of whatever this is taking over my life” and started making positive changes little by little. 

I began with setting my alarm just 30 minutes before I’d usually get up, I made sure to have a plan of action for the morning – get up, make my bed (so I wouldn’t get back in), shower & get ready, make my breakfast & go for a walk to listen to my favourite tunes. I made sure to stick to this daily and check it off my list on my phone. Some days were harder than others, and I would just be patient with myself – for example I’d only do a 15 minute walk instead of 30 minutes, I’d do yoga instead of strength training or I’d have an extra nice breakfast that day. Whatever I did, I did it for myself & moved my body – I didn’t let the condition control me.

I started eating healthier, nourishing my body with non-inflammatory foods and doing exercise with things like yoga and strength training to get the endorphins flowing. I started focusing on the positives & documented one second everyday that made me smile. I spoke to my family and friends about my daily struggles and even clients when I was having a rough day, it felt good to be open and honest with the ones I hold dear. 

Slowly but surely I began seeing a difference in not just physical health but mental health too. Don’t get me wrong, some days I definitely stayed in bed and watched Netflix but the good days definitely started outweighing the bad. 

What Happened

In November 2020, after the worst year of many of our lives, the build up of stress from the impact of covid on my career, my business and life in general started to get the better of me. The pain and other symptoms started to get significantly worse. In addition to the usual fatigue, pain, bowel issues and breast pain I started to get what I can only describe as stabbing pains around my spine and to the right side of my back. 

One night the pain was so bad I couldn’t sleep, eat or even move – the only time I could move was when I was hobbling to the bathroom ready to be sick from the pain. Around 3am I called my mum and literally just cried to her – I didn’t know what to do. I was clutching my pelvic area in a ball on the floor, crying for hours. Eventually I was told by NHS Direct to go to A&E, my mum couldn’t come in with me due to covid so I said my goodbyes and proceeded to see multiple doctors describing the pain I was feeling, which was quickly followed up with “are you on your period?” & “Oh it just must be some period pain, lets give you some tablets.” . I was in there for 12 hours, and in the 13th hour I was finally able to see a surgeon to rule out appendicitis.  I explained the symptoms, that I thought it could be endometriosis and she immediately agreed – she typed up a letter to my GP there and then, and I was referred to a specialist. I left with a little bit of hope. 

In January I decided to take the leap & pay for a diagnostic laparoscopy to determine what was going on. I understand this isn’t accessible for everyone but I felt after years of suffering and a 3+ year waitlist on the NHS I felt I was left with no choice. This is the only way to diagnose endometriosis as it doesn’t show up on scans, only ovarian cysts do. It’s an invasive keyhole surgery where they kinda just open you up & have a look around. It was funny because after years of people telling me that it was all in my head, the pain was normal and basically gaslighting me into thinking what I was feeling was fake, I began thinking those things. I had a bad dream whilst I was knocked out having surgery that they found nothing & left me in a carpark. It’s funny thinking about it now, but I honestly woke up crying thinking that I had wasted all this time and energy on something I had made up. I was immediately comforted by the nurses and my surgeon who explained they had found endometriosis. 

It gets better. 

Following this I was scheduled for my Endometriosis excision surgery on March 13th, 2021. My surgeon found out that I had stage 4 endometriosis which is very severe – it was in my bowels, rectum, pelvic area, ovaries, ureter & I had growths joining my colon to my abdominal wall. I had mixed emotions coming out of surgery – I was so relieved that I couldn’t stop crying. I called my family and my boyfriend (whilst being very delirious from the anesthetic) as they weren’t able to visit due to Covid and spent most of it crying from relief. I’m still healing and recovering but mostly I’m thankful that I have answers after years of being left in the dark. I guess I also felt a little disappointed in our healthcare system and the multiple doctors, nurses and gynaecologists I had to plead my case to just to listen to me. Every step of this journey I’ve had to beg someone to listen to me and convince them of how much pain I was actually in. 

Despite all the hardship I’ve been through I know I’m stronger because of it. I’ve learnt positive coping techniques that I will continue to use throughout the rest of my life. Whilst recovering from my surgery I’ve actually found myself missing my daily walks, yoga and exercise – who would have thought! I’ve been able to connect with some wonderful people across the world who are suffering with the same issues I am, we offer each other support, love and guidance when needed which is honestly so wonderful. 

I know it can be deflating  and overwhelming when you’re dealing with something and the people you’re supposed to trust to help and support you don’t. But please don’t give up. Be your own advocate, talk to your loved ones to get support, join groups of people going through the same things as you, be persistent & don’t be afraid to push your doctor for answers. 

Menstrual pain should NEVER be so painful that you are sick, have to miss work or can’t do daily activities. If you think you are suffering please talk to your healthcare professional and seek help online. I found the majority of my information through https://www.endometriosis-uk.org. 

You are so much stronger than you think. You can and will get through this!