Endometriosis and me…

When we’re young, invisibility seems like such a cool thing. Invisible friends, Invisible pets, invisible superheroes and even invisible cloaks. But what if the invisibility is illness? Not so cool.

I have a condition called endometriosis. You may have heard a little bit about it, but as with all illnesses, every situation is different. My experience may not be the same as yours or someone you knows or it might. But I feel it’s important to share my story and raise awareness to those suffering in similar situations.

me at peyrou

Unlike many sufferers, my main concern wasn’t the pain. Yeah, I got pain, but mine definitely wasn’t as bad as some people get it. You’ll find, endometriosis is one of those issues, where the symptoms can vary between person to person.

You may have no pain at all and be a stage four sufferer, or you could be a stage one sufferer and doubled over on the floor in pain 24/7, or vice versa.

However, one thing most of us can agree on, is how life changing the symptoms can be.

You see, the problem with endometriosis is that you need to have surgery to be diagnosed. And after around 5 years of “lady issues” I finally received that surgery and diagnoses in September 2017.

my endometriosis operation wounds

After battling with doctors, gynecologists and even myself, the diagnoses was actually relief. Because I’d traveled through believing I had many different illnesses, or that I was a massive hypochondriac.   

For those of us who’s pain isn’t as severe as our other symptoms, some blogs or online forums, can really belittle you.

Make you feel like, without the pain, your endometriosis can’t be that bad.

But Let Me Tell You – Endometriosis, Without The Pain, Can Still Be Just As Bad

I hate to look on life with a negative spin, but

there have been times when my symptoms have made me feel suicidal.

Where, the thought of maybe not being able to have children has depressed me and made me feel unworthy. Am I less of a woman because I may not be able to be a mother?

Am I trapping my husband into a relationship where one day he may have to take care of me? A relationship where he may not be able to have children with me?

Does my husband resent our sex life? Will he cheat because I may not be able to give him what he needs?

My Journey

My symptoms of endometriosis are no worse, or no better than anyone else’s. It took me 5 years to get diagnosed and you can read how I ended up with my diagnoses in “Endometriosis and me part 2“. We are all in this journey together. But for those who want to know,

here’s my Endometriosis symptoms:

  • Bleeding during exercise.
  • Bleeding bi-weekly as a minimum.
  • Currently writing this on day 22 of this period.
  • Pain during and after sex.
  • Pain and bleeding during exercise.
  • Fatigue and low moods.
  • General under the weather feelings.
  • Tugging, stabbing and twisting pains.
  • Constipation.
  • Bloating.

endometriosis bloating after surgery and before

How has Endometriosis changed my life?

  • I’ve had to cancel many social events
  • Take time out out of work
  • Spend way too much time at doctors
  • Avoid visiting friends and family to stay over
  • I can’t wear white
  • My sex life is a little (lot) less wild
  • I spend way more time in bed than I want
  • I can’t attend the gym as much as I want
  • It’s affected my health and fitness goals a lot
  • It has tested our relationship
  • Bleeding is physically and mentally draining
  • Until we try, I still don’t know if I can have children

Having children, has been my only real aspiration in life. I knew from a young age, I wanted to be a mum. In fact, my school friends all figured I would be one of the firsts. They all have children now.

I remember going for an ultrasound, before my diagnoses, unsure what it was I was suffering with, but knowing that any issue with that area could mean an issue reproducing. I sat in the waiting room, surrounded by expectant mothers, and scans of babies. All I could think, was why on earth, do gyno issues and pregnant mother things all go to the same hospital ward? How heartbreaking. Luckily I’ve never been told either way, but deep down, I know there’s a possibility we can’t. But that possibility is always there. I could have an accident tomorrow and not be able to, so I can’t let this illness rule my life.

Even with Endometriosis, I’m lucky

my endometriosis operation wounds

Believe it or not, I’m lucky.

Over the years, I’ve been working on my mindset. I think it’s important to try and look at life with a positive spin, or at least find the positives in negatives.

Life is a product of your decisions, not your circumstances.

If we can’t have children, we can adopt, and dealing with the challenges will make us stronger.

It’s through positive steps, like writing this blog post and getting these emotions out on *internet*paper that I can help change others lives, by informing them, and helping spread the message.

But not everyone can put a positive spin on a negative situation. Especially a negative situation like endometriosis.

Facts:

Endometriosis is often dismissed as “just period pain” or “lady problems” when really it needs to be investigated and looked after. Delays in prognosis can lead to unnecessary pain, issues, infertility and in extreme circumstances suicide. Yeah that’s right. There have been reported cases of endometriosis sufferers committing suicide, unable to cope anymore. But is it any surprise?

numbers for suicide sufferers

It’s not doom and gloom!

There are treatments out there, if you get seen fast, and by the right person. On average it takes 7.5 years from onset of symptoms to get a diagnosis. My diagnoses and surgery took 5 years, but as endometriosis is being spoken about more and more, hopefully it will be less time for the next person. Keep fighting until you get your answers!

 

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