Living with Endometriosis, what we wish you knew

Endometriosis…or as doctors for years liked to tell me….’bad period pain’ is something I have lived with for 20 years now. For those of you who have no idea what that is, here is a great link that explains it better than I can:

know your endo

I’m going to post my story below, but for the dot point kind of people (you know who you are), here is a list of what we wish you knew about living with Endo:

– It’s awkward to explain what’s going on. No one wants to hear about your cycle or how when you have a period your body bleeds internally from the extra lining growing all over your organs.

Trying to get a diagnosis is like trying to find a rare Pokemon. It takes years and years to finally find a doctor who will agree to do the surgery.

It hurts like hell. To spend your days curled up in the foetal position, making sure you set your alarm for every 4 hours so you don’t miss a dose of pain meds is physically and emotionally draining.

When other women say “yer I get period pain too but I just push through it” you want to push them through something….if you know what I mean….

It sucks to cancel plans because of the pain. It especially sucks when you’re letting other people down.

Asking your doctor for more pain killers and not feeling like he probably thinks you’re a druggy is hard.

Having children can be difficult or even impossible. To have people constantly ask ‘When are you having kids’ can weigh heavy on your heart.



The early years
For me it has been a very hard journey. From the first period I was in pain. School was hard. At 18years old I finally went and saw a specialist. For ten years I asked doctors and specialists to check for endometriosis only to be told that I was over reacting to period pain. I knew something wasn’t right. Each month for three days I would be in bed, having to set my alarm through to night to take pain killers so that I didn’t miss a dose and wake up in excruciating pain.
I had to call in sick at work regularly only to have other women judge me, saying that I was weak and I couldn’t hack period pain.

The real struggle came when we tried to have children. We saw specialists for 4 years, and time and time again I would ask them to do the surgery to look for endo. Again I was told I didn’t have it. We had miscarriage after miscarriage.
Finally I convinced a reluctant doctor to order the surgery.
When my surgeon came into my room after the laparoscopy and told me I had extreme endometriosis I was so relieved. Even though that was bad news it was the first time in ten years that I had received validation for my concerns. He told me that looking at my scans he could see that I would be in a lot of pain. To have someone physically show me the photos of what was going on in my body and to agree with me that I was suffering was bitter sweet. Thankful for answers but also concerned for the future.

Having Babies
Once the endometriosis was removed I was able to fall pregnant with Isaiah that next cycle. I couldn’t believe how easy it was and for a moment I grieved the losses we had experienced and wondered if I had had surgery ten years ago, would we have had a baby earlier?
* I do have to point out here that I love the children that God has blessed me with and I’m so thankful for them. While I have been through loss I consider it an opportunity to encourage others to seek God in everything and to find joy in Him and His plan for our lives.

Post Babies
For me the goal was having babies. Anything endo related was all focused around that. Now we have finished creating life. We’re on the other side. I’ve realised that i never thought that far ahead. I never thought about what my life with endo looks like after babies.
I’m back to that place of struggling with my disorder.
I hate the  hormone replacements. They make me feel like a crazy person.
I’m sussing out natural options but that’s not a guarantee.
Surgery is only a temporarily fix.
I’m now trying to figure everything out, searching for a solution, praying for a cure.

Why share my story?
Thanks to Emma Wiggle Endometriosis is on the map. People are more aware. But there’s still a lack of understanding for what it is and how hard it is to live with it.
If you have endo, share your story! Don’t be embarrassed. Be an example to the young women around you who may be suffering with the same thing.
If you know someone with endo, cut them some slack. We are sometimes unreliable. We don’t want to be, we don’t want to let our friends down but there are times we literally can’t move. Just bring us chocolate and tell us we’re pretty.

If you have a story to tell please share in the comments section! I’d love to hear your journey.


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