Endometriosis

10 years of unexplained pain that stumped doctors and what I learned.

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Endometriosis 

I’ve avoided talking about this or posting about it mostly because it was all very traumatic for me. 

I actually have A LOT To say about this chronic illness and it’s hard for me to know where to even begin. 

It was 10 years of unexplained pain for me. 10 years of doctors telling me I needed antidepressants and I had some sort of imagined pain. 

Doctors telling me I didn’t have any bowel issues, I didn’t have any bladder issues and my periods were regular. 

Still for me I knew something wasn’t quite right. I knew it wasn’t normal to get a bladder infection every single week and I knew it wasn’t normal to be in excruciating pain in the lead up to my period. I knew it wasn’t normal to be bed ridden when I had my period. And I knew it couldn’t possibly be normal to burn yourself with a heat pack nearly every day. 

Most doctors dismissed me, not being able to find a diagnosis or a real solution. 

The main solution for them was just simply ‘go on the pill’ your periods will be better then. 

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So, what is Endometriosis????

Endometriosis is a condition which is estimated to affect 1 in 10 women during their reproductive years. With Endometriosis the tissue that normally lines the uterus grows outside of the uterus.  The tissue can be found on the ovaries, fallopian tubes, vagina, intestines, uterus, and lungs. 

Endometriosis impacts all aspects of a woman’s life. It’s not just the physical symptoms but also the anxiety around the pain, the financial burden and the impact it has on physical and romantic relationships. 

There is a delay in diagnosis between 7 to 10 years. This is due to girls and women normalizing symptoms when women do finally seek medical assistance. Early diagnosis and treatment reduce the long-term impacts of endometriosis and the frequency of invasive treatment and fertility issues. 

Raising awareness is the first step to reducing the delay of diagnosis across all age groups. Education about menstrual health, what is normal and what is not is extremely important. 

What the medical community should know: 

“Endometriosis is excruciating, devastating, exhausting and it sometimes feels impossible to accept that we could be in pain at some point every day for the rest of our lives. We need family, friends, partners and health professionals on our side who believe and support us” 

For me my knight in shining armor came in the form of a man who I later learnt was the best in QLD at dealing with Endo. I went in for a consult with him to talk about various symptoms. At the end of the chat he looked at me in the eye and said “it’s highly likely you have Endometriosis” and you can choose to have surgery when you want to but I highly suggest you do have surgery sooner rather than later. 

It took me several hours to really understand the volume of what he had said to me after the consult. It truly meant that there was an issue there that I wasn’t making it up and even though there IS NO CURE for ENDO there was surgery that I could have to ease the pain and remove the current Endo that had grown in and around my uterus over the past 13 years. 

So, I of course elected to have the surgery and of course he found A LOT of endo and a lot of it was over the left side of my abdomen, where I had continually had unexplained pain. 

This guy literally changed my life!

Things you need to know if you’re female:

The symptoms of Endo:

  1. Pain during and or after sex 
  2.  Chronic pelvic pain 
  3. Pain throughout the month and not just with periods 
  4. Back and leg pain 
  5. Usually lower back pain and nerve pain in your legs 
  6. Pain with urination 
  7. Fertility issues 
  8. Heavy periods
  9. Irregular periods 
  10. Constipation / difficulties going to the toilet regularly 
  11. Specific pain in the same areas 
  12. Difficulty falling asleep when you have your period due to the pain 
  13. Mistaking endo pain as bloating and reactions to food
  14.  MUCH MORE

What should you do if you have an Endo Flare up: 

  1. Rest: Don’t feel guilty for listening to your body. You can’t go out.
  2. Pain relief: you’re going to need to get yourself some strong pain relief from a doctor if you live in AUS. 
  3. Avoid trigger foods/ drinks: if your symptoms are triggered by foods and or drinks such as dairy or alcohol then it may be best to avoid these
  4. Heat: use a heat pack and heat pads and have a hot bath for pain and aches around the abdominal area. 
  5. Comfy clothes: Wear loose clothes and PJs to take the extra stress away from the tummy and pelvis
  6. Distractions: find distractions that you are able to manage when you are in pain. Watch a Netflix show or play a game on your phone. 

What should you do if you are a Man and your partner/wife has Endo?:

  1. Understand: It’s important to do your research and know what your partner is going through.
  2. Be patient:  no matter how well your partner knows their body, and how organized you are, it can still be hard to predict when a flare up might occur. 
  3. Be prepared: Different remedies work for different people. 
  4. Compromise + Communicate: When a flare up occurs, sometimes it’s worse than before, so it’s important to talk to one another and establish how intense it is, so you can help in the best way possible. Sometimes the timing isn’t ideal! But be supportive and be flexible.

The truth is these last couple of years have only been bearable due to my supportive and caring boyfriend. I’ve had times when I’ve had an Endo flare up travelling overseas in Ireland and had no pain medication on me and many, many miles walk far from home. He always solves problems quickly because he knows when I am truly in pain and need his help. 

What’s new with Endo:

When I returned from Bali to Australia this September I learned about two new drugs: 

  1. Visanne is used for the treatment of the painful symptoms of endometrial lesions (displaced tissue of the lining of the womb). Taking one visanne tablet everyday leads to the shrinking of the endometrial tissue and reduces associated complaints such as pelvic pain and painful monthly bleedings. 
  2. FBD clears Orilissa for Endometriosis pain. The US food and Drug Administration has approved Orilissa, the first oral gonadotropin-releasing hormone antagonist specifically developed for the treatment of moderate to severe pain associated with endometriosis.

If you have Endo you know you need to be on something like the Mirena or the pill or be pregnant in order to slow or reduce the rate at which Endo grows back. Or you will find yourself having multiple surgeries, which sucks!

I know I will eventually have to have more surgery. But for now, I am working on managing my daily pain and doing what I can to prevent my endo from growing back rapidly. 

I don’t want this illness to take over my life at all. I know that I will continue to live a healthy and very active life where I continue to travel the world with my boyfriend and compete as a bikini pro again.

However, after being diagnosed at the age of 30 and having the surgery then, I am better equipped to managed the pain and manage my anxiety around the pain. 

If shouting about endo every day on my social media will help younger women know and understand that they don’t need to go through the years of confusion that I did then I will continue to do it. 

Becylu xx

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