Endometriosis - Amanda's personal story!

Today I’m sharing about my own personal experience with endometriosis and, yes, I’m going to be talking about periods! It’s true, it is an insidious disease that not only affects your ‘lady bits’ but at its worst and during flare ups, can affect all areas of your life and this is certainly true for me.

So what is Endometriosis?
Endometriosis is a disease in which the lining of the uterus grows outside the womb in other parts of the body. It’s pronounced like en-doe-me-tree-o-sis. Endometriosis has four stages increasing in severity. 10% of women suffer at some point in their lives and there is often a delay in diagnosis of 7 to 10 years. Common symptoms include pelvic pain that puts life on hold. It can damage fertility as it most often affects reproductive organs, it can however also affect your bowel, bladder and other organs near your pelvic cavity.

Where it all began
My life, since a teenager, has been impacted significantly with gynecological problems. Heavy and painful periods were the norm and something I suffered through every month with heat packs, medication (that barely worked), lots of tampons {I should have bought shares in the company!}, back pain, nausea and fatigue.

It affected my school work, social life and my love of swimming training {I use to swim 150-200 laps at 5am and then the same again after school/work, along with other drills}.

Living with the pain
As the years progressed I suffered not only around period times but other times as well. It’s certainly a myth that pain occurs just around your cycle time – I learned this the hard way and it took me completely by surprise.

My pain endured for years, and as difficult as it was, I accepted it and tried to learn to live with it after being told over and over that my heavy and painful periods were the norm for me and there was nothing else contributing to my pain. The medical profession would not listen to me and I simply gave up visiting doctors –  I certainly didn’t make the best decisions back then but it’s difficult to think clearly when you are in constant pain.

My immune function was lowered as the constant pain wore me down and I had numerous other illnesses, like colds and flues, to deal with on top of it all.

My fertility
Fertility was also an issue for me, and our number two baby almost didn’t happen. There is six years between our girls and I underwent fertility treatment during this time and boy was that a tough road to go down!

After a lot of soul searching and tears, we stopped the fertility treatment and started to enjoy being a family of three. A lovely surprise came along, after a short while, and we were blessed with another gorgeous little girl. We are truly thankful and grateful for our two beautiful daughters.

Psychological health and the impact on my family
My mental health would suffer at times as the pain and desperation would take over, and depression would set in. This disease affects the whole family. Robert would feel helpless when I was gripped in a major flare up and frustrated when I wouldn’t continue to seek help when I was struggling.

Pain really does affect the mind and definitely your fighting spirit and I did give up for a while there. The girls missed out on spending quality time with me as I was stuck in my bed and often in my head!

Before my diagnosis
Whilst I had accepted that this was the norm, and didn’t seek regular help, on occasions the pain was so severe that I ended up at the hospital and each time I was told it was a bad period.

Two and half years ago my symptoms worsened further and I was barely able to work or function. I had started yet another heavy period which just didn’t stop. I had been seeing my lovely GP for a couple of years and had not mentioned my symptoms to her, as I just couldn’t face being turned away by another doctor, but finally I found my voice; and she listened and took action!

I was seen by a specialist as a priority and all tests were pushed through so the whole process happened quickly as my health was rapidly declining. I bled, heavily for 10 weeks straight until I had surgery. In the three weeks leading up to my surgery date, I wasn’t able to leave the house at all due to leakage, despite using big fat maternity pads, {yuk! when you don’t have a cute baby to cuddle!} which were still not enough. Endless clothing items were thrown away due to staining and during this time I felt isolated as I missed so many family events.

Diagnosis and treatment
After my surgery I learned I had stage four endometriosis of my uterus, pouch of douglas, top of my vagina and in my bowels. I also had fibroids, chocolate cysts and scar tissue to deal with.

I’ve got a multi-facet treatment plan now which includes, medical, surgical and allied treatments along with some lifestyle changes – this has served me well for the past two years (touch wood it continues) and I’ve not had any major flare ups during this time.

Life as it is now
Whilst there is no cure for endometriosis and, realistically, I know this is not the end of my story; but for now I’m enjoying life without the constant reminder of this rotten disease. I’m one of the lucky ones that get a reprieve – others are not so lucky.

Normally I’m a private person especially when it comes to things so personal and raw but I felt ready to share my story and do my *small* part in raising awareness.

If you too are suffering any of these symptoms; I encourage you to speak up and not give up until you are heard! You are not alone AND you are so worth it!

Lots of Love Amanda xx


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