Understanding Endometriosis with Bethany Johnston

It’s not surprising that a lot of us know very little about Endometriosis. Despite this condition affecting 1 out of every 10 UK women of reproductive age, and 10% of women worldwide (which equates to 176 million); it is one of the most under-researched and under-funded conditions. Thankfully there are people like Bethany who spend their time sharing their journey online to raise much-needed awareness and reduce the mystery that currently surrounds this diagnosis (or often, lack thereof). I am very grateful to have had the opportunity to learn so much from her and for her kindness in answering our questions so transparently. So let’s start from the beginning…

What is Endometriosis?

Bethany: “Endometriosis is where tissue similar to the lining of the womb grows in other places such as the ovaries and fallopian tubes. It’s a full body disease and has been found in every part of the body. It’s not to be confused with the Endometrium (which people often mistake it for).”

Bethany: “The Endometrium is the inner layer. During a woman’s menstrual cycle, hormones cause the Endometrium to change. Endometriosis is derived from the word ‘Endometrium’, which is the tissue that lines the uterus. Patients with Endometriosis have Endometrium-type tissue outside of the Uterus. The only link is from the name.”

That makes sense. I guess that’s why some people make assumptions that Endometriosis is a term for really bad period pain. What are the real symptoms of Endometriosis and how does it affect you on a daily basis?

Bethany: “My symptoms are: lower back pain, period pain (but only slight), Endo belly (which has been mistaken for being pregnant), chronic pelvic pain, pain when passing urine, constant UTIs [Urinary Tract Infections] and sleepless nights.

Endometriosis affects me every day of my life. There’s not a single day that I am not in pain; I can just deal with it well. I have a very high pain tolerance and get on with my life as much as I can. It’s not very often that I get floored by the pain but when I do, I physically cannot move from my bed or sofa! I have a hot water bottle at work, a back cushion for the chair, a stash of Codeine [pain relief] and a draw full of heat patches and peppermint tea. I always say that I am not going to let the disease control my life. I’m the one in control and no matter how much pain I am in, I always try to remember that!”

It sounds really debilitating but your mindset is so positive. You described a bit there about how you manage the pain and discomfort, but are there any specific treatments and if so, are there any that have worked for you?

Bethany: “I have had 4 Laparoscopic surgeries where they have used Diathermy. Diathermy is where they burn the top few layers of the Endometriosis growth. I have also had Zoladex injections which are a monthly injection in to the stomach for a period of 6 months. I am currently waiting for my next round of this. GnRH-agonists (Zoladex) suppress oestrogen synthesis by the ovaries which stops the menstrual cycle, effectively putting me in to a temporary menopause. I will be having these injections for 6 months and then 3 months in to this I will also be having HRT [Hormone Replacement Therapy] which I have never had before. HRT is a treatment to relieve the symptoms of menopause by replacing hormones that are at a lower level. I get prescribed the likes of Naproxen [anti-inflammatory drug], Codeine and Tramadol [pain relief] on a regular basis. In the past few months I have used a tens machine [transcutaneous electrical nerve stimulation used to manage pain] which I am finding very useful.

It really does take a lot of management and I can imagine the recovery from these procedures isn’t easy, but it’s great there are treatments. If someone is reading this wondering if they have Endometriosis, what should they do?

Bethany: “Yes, recovery is hard and the more operations you have the longer the recovery seems to be.

If someone is wondering if they have Endometriosis I would tell them not to give up. It took over 7 1/2 years for me to get my diagnosis. You know your own body and you know when something isn’t right. If your doctor isn’t listening to you, ask for a different one. If that doesn’t work, join a different GP practice and tell them about it. Ultimately if you don’t push, unfortunately you won’t get anywhere. There’s only 200 Endometriosis specialists in the world and lots of doctors and gynaecologists don’t actually know an awful lot about it. I’ve been told to get pregnant as it will cure it, then told I need a hysterectomy to cure it. There’s no known cure for this disease but some medical professionals are advising their patients to do life changing things which won’t actually help! You know your own body. Don’t give up!”

Only 200 Endo specialists in the world is crazy! That’s exactly why it’s so important to raise awareness, so that more people are influenced and more research can be done. You have an amazing Instagram page (@invisiblemeinvisibleyou) where you share your journey so authentically and with so much knowledge. What made you start raising awareness on social media?

Bethany: “I started sharing my story online because when I got told I had Endometriosis after my first surgery, I didn’t get any aftercare or help. I felt like I was completely alone and at that point, I didn’t even know how common Endometriosis was. I felt that if I share my story and help raise awareness then hopefully I can help even one person avoid feeling the way I did.”

That’s amazing and it seems to really serve it’s purpose. The community over there is really lovely. Do you have any encouraging words for anyone who has recently been given the diagnosis of Endometriosis?

Bethany: “I would love to tell anyone who’s recently been diagnosed, you are not alone. The Endometriosis community online are always there to help each other. The Endometriosis UK charity have a helpline which you can call to get advice, support and tips for how to manage your condition.

Look after yourself. There are days where you feel like you can’t do anything and you have to call in sick or stay in bed. Do it. It is your health and that is the most important thing in your life. Take time to sit down and explain your condition to your loved ones. It may take them time to understand it but once they do, they will become the best support network for you.

Don’t let the disease take over your life. Live your life to the fullest. Yes, it may take a little extra time to do something but don’t give up! You will only regret not doing what you want.”

If you find Beth’s story relatable and are experiencing similar symptoms, please speak with your GP.

For more information follow the links below:

Bethany’s Instagram- @invisiblemeinvisibleyou

Endometriosis UK

NHS Conditions- Endometriosis

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