“But you don’t look sick” Beth’s story

Name:

Elizabeth or Beth! 

Age:

23

Your Invisible Illnesses:

My illnesses: Endometriosis, Coeliac’s Disease, Asthma (I’m in the middle of being diagnosed with gut health problems, acid reflux, poor digestion etc!)

My focus will be on Endometriosis.

Your Journey  & diagnosis time:

It took about 10 months after my first op but I’d suffered in silence since I was 13 with my extreme period pain, thinking it was normal and that I had to just “get on with it”. I was diagnosed with Endometriosis aged 18 after being ill for a long time. 

I’d always had bad periods, since I got my first one aged 13. I was in a lot of pain, feeling sick, dizzy, bloated, stuck in bed. I always had really heavy periods and as a small person, (5ft 1 and 7st) I would feel so drained physically and mentally after a 7-8 day long period every 21 days. The stomach, back, leg, vaginal pain would last longer than my period and I just assumed this was normal. Whenever I asked my friends about period pain, they’d say that they got pain too. 

When I was 17, I complained of having a constantly painful and lower abdomen after a sick bug and after a long fight (including about 10 pregnancy tests!), 5 nights in 2 different hospitals (one of the hospitals said it’s all psychosomatic and told me to go home and have some rest!!) and 3 different types of scans, I ended up having emergency surgery to have my appendix taken out.

I was told that multiple things were wrong (ovarian cysts, puss, adhesions) and that there was a lot of blood in my pelvis and outside my uterus. I went back to my surgeon for a post op and told him I was still suffering from pain. He told me it’s IBS and referred me to an IBS consultant who told me it’s a gyne problem! 

I was in the middle of my A levels at this time, I found studying and exams so hard, I was constantly in pain, had such brain fog and was at my lowest. After being referred back and forth for 8-9 months, in 2015 I finally went to see a gynaecologist (privately because the NHS weren’t helping me properly) who organised another laparoscopy and diagnosed me with endometriosis and adhesions on my stomach, bowels and uterus. I also ended up being severely allergic to the anaesthetics that they use in surgery and had anaphylactic shock and had to be essentially brought back to life on the operating table. It was a really traumatic time for me, I was so ill when I came around post surgery. It took me days to even get up and walk, my throat was scratched from the nurses shoving a tube down my throat to help me breathe when I went into shock so my gag reflex was constantly kicking in every time I swallowed. I remember crying every night I spent in hospital. I was supposed to be going on a trip to Cambodia to trek and help build a village for the locals, I’d raised over £3,000 on my own and I had to cancel everything. It was such an upsetting time. 

Post op, I tried out different treatments to combat my endo coming back. He told me that my options were to have surgeries every few years to burn out the endo, take a contraceptive to relieve the pain, have a hysterectomy (I was 18 at the time!) or just live with the pain. 

After experimenting with many contraceptive pills, injections, implants (I ended up having a period for 6 weeks in 2016 because a contraceptive messed with me), I found a pill that works for me for the time being and I still take it now. However, when having a medication review in 2018, a nurse told me that it’s best to “take a break” for a month from my pill. So I did just that. I had one of the worst periods I’ve ever had in my life. I was so sick, I couldn’t get out of bed, I was in intense pain, I cried so much. I missed nearly a week of uni. Even after a 10 day period, I got another one 3 days later, it was a nightmare. My body was out of control. I had to let it settle before I went back on the pill, my GP told me that I don’t need to take any breaks from the pill unless I want to.

Since then, things were pretty smooth sailing. Up until last year. 

Things got worse again. I’ve been spending most of my days in front of the toilet, with stomach pain, extreme bloating, vomiting, dizziness, body pains, headaches and generally feeling low. I had another laparoscopy in Dec 2019 and was told that endo hasn’t come back (which I am so thankful for) but now I’m undergoing another procedure to investigate the cause of my problems. Hopefully this will shed some light on the cause of my pain. I’ve tried IBS medication but none of them have worked, I take pills daily to combat my acid reflux but sometimes it burns so badly I can’t eat. I’ve lost nearly a stone in weight when I am already underweight, and I don’t like leaving my home in fear of having a sudden onslaught of pain and not being able to curl up in bed. 

What does Invisible Illness mean to you?

Invisible Illness means so much to me. It means that, although we look fine on the outside, we’re suffering on the inside. It’s taught me to be understanding to others who suffer from different invisible illnesses and to be patient with those who don’t understand or want to learn. 

Has your understanding of Invisible Illness changed over time?

My understanding has definitely changed over time. I honestly didn’t acknowledge my disease until really 2 years ago, I was in complete denial for about 3 years. I wouldn’t tell anyone or talk about it, even though I suffered, but because people didn’t understand, and I didn’t want to unburden myself. But I’ve learnt that talking about my problems, has helped so many others and although some pity you, most are sympathetic. Luckily, I’m surround by amazing family and friends who constantly support me at my worst times.

What do you want others to know?

I want others to understand that although we’re smiling and chatting, enjoying life, it doesn’t mean that we don’t suffer. I tend to put on a front for my friends, pretending that everything is okay when really, I’ve got crippling belly ache or brain fog or my whole body aches. I want others to also know that it’s okay to ask questions (within reason), I’m happy to help educate especially about my disease. 

What is the worst part about having an Invisible Illness?

The worst part of having an invisible illness is two things:

1. Having people tell you that you’re making it up, or it’s psychosomatic, or that you’re “fine”. You know your body better than anyone else and if something is wrong, you have to fight for yourself. 

2. How my life has changed. I wanted to travel, go to every concert, be active, workout, run marathons and instead, I’m stuck at home with a hot water bottle and pain killers. 

What is the best part about having an Invisible Illness?

The best part of having an invisible illness is that I’m so much mentally stronger than I ever thought I’d be. I’m definitely more of an empathetic person. I’m less bitter about what life has given me, and more accepting about the circumstances. 

What is the biggest misconception around your illness?

The biggest misconception about endo is that “it’s just a bad period”. No, it’s not. Yes, period pain can be crippling, but endo is a completely different ball game and I wish people would stop saying that it’s less than it is. 

What are your hopes for the future?

For the future I really hope to educate more people about endo, I hope to help fund research for a cure (or at least something to relieve the extreme symptoms). I currently donate to the Endometriosis U.K. using Amazon Smile so that my purchases can help fund the research that we need. 

Where can we find you on social media?

Instagram: @notsoperf_xo

Youtube: notsoperfectgirly 

chronic illness endometriosis health health and wellness Invisible illness Surgery wellness

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