endometriosis social support

Endometriosis Series: Instagram Interview

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This is the third instalment of the Endometriosis series. For this article I spoke to a wonderful woman named Caitlin who runs an instagram page offering support, advice and love to those who suffer with endometriosis. The instagram page is called No Ovary Acting and you can find it here.

Endometriosis No Ovary Acting

What made you decide to start the Instagram page?

It was after talking to my friends and family. I was looking for support whilst going through my diagnosis but I realised that nobody really knew what to say because they didn’t really understand what I was going through. Most people didn’t even know what Endometriosis meant!

The information, education and awareness surrounding endometriosis is just awful; even at school I was never taught about conditions such as endometriosis, PCOS, fibromyalgia… nothing!

So I started No Ovary Acting so that people had a place to find information and give a very open and honest account of what I, along with millions of others go through.

What is your personal experience with Endometriosis?

I can only really give my account so far rather than the whole picture as I am still going through the diagnosis process! It can take up to 7 years on average to be fully diagnosed… which is crazy!

I was experiencing a lot of pain during my periods, but also excruciating back and leg pain. I just endured it for a while because I thought it was normal period pain, but it got to the point where it was having such an impact on my life so I went to the GP. Now that was not easy as my pains were brushed off and put down to normal feminine pain, but I knew it was more than that so I kept going back and fighting for my health.

Endometriosis has changed my life, and that’s not just me being a drama queen… for once! It has affected my social life and general day to day tasks. However, it has also changed my perception of my body. At first I was so angry with with my body for not working “normally” and having this chronic condition which causes so much physical and emotional pain. But after a while I have started to love my body and I am so proud and impressed with what it deals with everyday. 

What advice would you give to someone who thinks they have Endometriosis?

Go to your GP! Please don’t ignore these types of pain just because we’re taught to keep quiet and suffer through. There’s a good chance it could be just bad period pain but why risk not checking to see if it could be something more? I won’t lie, GPs often brush off endometriosis but be strong and keep pushing. Remember you know your own body better than anyone.

Nobody wants you to go through the process of getting diagnosed, or carry such a diagnosis through life. But there is a hugely loving community just waiting to support you.

What is your goal with your Instagram page?

The No Ovary Acting page is a place for me to vent and give an honest, unpolished account of how I am feeling and the emotional and physical tolls which come with having endometriosis.

The main goal of the page is to raise awareness, and for it to be a safe place for people to ask any questions they want. It is a place for support, community and education, where anyone can message if they need some advice, love or support.

Do you think there is enough information and education on Endometriosis? 

Absolutely not! I find it so infuriating that as young people we are not taught about such common issues which 1 in 10 of us will encounter. If such issues were less taboo and were included in general health education, so many more people would be aware. Those people who suffer it wouldn’t go through life suffering in silence because they think what they are experiencing is the norm.

Whilst I love having a page and seeing loads of others sharing information as well, we shouldn’t have to turn to social media for such education.

How important is social media and Are there any other instagram pages you would recommend?

It is so important to tailor your social media feed to your own life and experiences. Surrounding yourself with positivity regarding Endometriosis will improve your own experience with the condition.

There are so many! Too many to mention them all. But my top five would be:

@_endoaware_

@cute.n.chronic

@hope.endo

@theendosister

@endostood

Although it has taken a chronic condition for us all to meet, I couldn’t be more thankful for this community. They have helped me through the darkest times and supported me when I didn’t think I could carry on the fight. The best part about most of the pages on social media is the positivity and lightheartedness that they radiate despite talking about such a tough, life-changing condition. I couldn’t be more proud to be called an endowarrior.

Final Thoughts

I hope this has helped you find an online community in order to help you through this often debilitating condition. Remember you are not alone in this struggle and there are so many people out there willing to help.

Once again Caitlin’s No Ovary Acting page can be found here.

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