What's it like living with endometriosis?

Endometriosis is a disorder that affects around 1 in 10 women. Despite this, many of us don't know what it's actually like living with it. So, this week, for Endometriosis week, we have got our very own Nikeisha in to discuss her own experience and answer all of our questions!

When did you first suspect you had endo?  

I was about 18, periods had never really bothered me, and what seemed like all of a sudden, they became really painful, heavy and lasted much longer.

What are the main symptoms you have?  

My symptoms have actually changed over the years. My periods have calmed down a bit and are a bit more regular which is great but the other symptoms I have are:

• Fatigue is a big one
• Bloating and endo flare ups (I can literally look 6 months pregnant)
• Constantly needing to wee - I can't hold my bladder for long. If I do hold it too long, it’s quite painful to go.
• Painful and very irregular bowel movements - Unfortunately my endo has spread to my bowels. 
• Painful ovulation.
• Lower back pain, especially during my period. 

How were you diagnosed?  

My doctor at 18 suggested I had Endo based off my symptoms at the time, so I booked in for the surgery to diagnose and treat. But I cancelled at the last minute, wanting to try alternative ways to treat it first. A few years later, I did have the surgery and they confirmed it was Endo.  

What stage are you? 

Stage 4, which is the most severe unfortunately. But the good news is, stage 4 doesn’t necessarily mean horribly painful periods. Your level of pain does not always reflect the severity of the disease.  

What has been the best treatment for you?  

Honestly, the best treatment for me has been a clean diet (which I do struggle with, a lot!) and natural hormone support. Endo is a hormone-dependant and inflammatory condition. So, an anti-inflammatory diet, lots of wholefoods, minimal dairy, processed carbs and sugars. And heat packs, get a really good heat pack!  

What has been the toughest thing to overcome?  

Knowing that there’s no cure, and the thought of this being something I have to manage for the rest of my life, or at least until menopause. That’s gotten me pretty down before.  

What has been the biggest help or support for you?  

Opening up about it! For so long I felt like I was the only one that could possibly be feeling the way I was, which is crazy because it’s so common, 1 in 10 women actually. But opening up about it, realising just how many girls and women around me were going through the same thing, and actually asking for advice or help has been incredible. Along the way, just by doing this and asking for help, I’ve picked up some really helpful bits of advice from other women.

What’s something other people might not know or the biggest myth? 

I would say the biggest myth is that pregnancy cures endo. I believed that for years. Unfortunately, it’s not true.  

One bit of advice?  

Do what feels right for you. I’ve seen so many different doctors and naturopaths over the years. All recommending so many different types of treatment. I’ve had to do a lot of trial and error but listening to my body and doing what I know feels right has helped. What works for me, might not work for you.  

Anything else you would like to say?  

YOU ARE NOT ALONE in this. Please reach out, reach out to me if you want to chat about it. Also, there are some really awesome IG accounts that I follow. Sometimes, a random post will pop up and remind me that what I'm feeling is ok, that I'm not crazy. And that’s really nice.  

If you have endometriosis and are looking for support, advice or just want to learn more check out these incredible accounts and organisations... 

Endometriosis.org
https://endometriosis.org/

Endo Girl Gang
@endogirlgang 

Endogram
@endogram 

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