WHY ENDOMETRIOSIS CAN FEEL SO ISOLATING

When I first found out I had Endometriosis, I didn’t tell anyone. My family knew because well, I needed someone to drive me to the hospital but very few people knew – even some of my closest friends only heard about it after several months. The truth is that I was embarrassed about having Endometriosis. To me, it felt like a dirty disease. Like someone had gone and spread a whole bunch of dirty blood around my insides and that it needed a good mop and some detergent to get rid of it.

It was also in a very private part of the body. When you start having to explain the condition of Endometriosis and have to use the words: “Vagina”, “Menstruation” and “Cysts” around people, it is somehow inevitable that our face might turn a shade of red out of embarrassment. I just preferred not to tell people and keep it to myself.

I think this is why the condition can feel so isolating. We are alone with it for a large part of the experience.

I also think our experiences with the condition often involve experiences where we are not taken seriously, where we are told that our period pain is “normal” and that we might just be pain sensitive or that it is all in our head. I remember experiencing these thoughts for many, many years prior to finding out and being properly diagnosed with Endometriosis. It creates a feeling of not wanting to speak up, for fear of being told: “you are just super sensitive” or “it is all in your head”. We keep it to ourselves because we don’t want to be made out to be weak or overly sensitive. Those emotions are incredibly hard to deal with and I remember feeling particularly isolated within several work environments which were very male dominated. It was unlikely I would ever be truly understood by those around me, when they had no concept of basic period pain, never mind the extensive pain I experienced!

Throughout my 20’s I simply accepted that I had to suck it up and deal with it.

Endometriosis was now part of my life and I just had to heed its warning. I had to adjust and compromise to its every whim and call – cos when that pain struck, it knocked me in a big, big way! It meant many nights of being alone with nothing but me, a hot water bottle and some girly movies to make the wait for the pain-killers to kick in a little easier. I missed so many special events or went along but felt that tender ripping in my abdomen throughout the whole event – really reducing the enjoyment of it all. I remember a particular wedding, where the pain was so bad, I spent a large portion of the day clutching my abdomen in the bathroom stall. It was really debilitating and so incredibly isolating. I felt so alone with it all and like no-one could possibly understand the experience of it all. I felt weak, limited and so incredibly disempowered about my body and my health.

I am sure if you are reading this, you can relate. Endometriosis is just so incredibly challenging to explain to others and even when we do, we still don’t think they really get what we go through. I often describe it as having a bad case of diarrhea but without the release of going to the toilet!

The truth is that I was embarrassed about having endometriosis

So, you might be asking yourself why I now share my story and write all this personal stuff, all over the internet….

There are a couple of reasons. The first is that I feel Endometriosis needs a voice. Women need to know that it exists and that there are plenty of other women who also suffer from the condition. Struggling with this condition on your own is really, really hard and when you can share the struggle with others and get motivation and real support from other women, it makes the whole thing so much easier.

Secondly, I sharing my story It took me a good part of my 30’s to finally realize that the medical system wasn’t really helping me. As much as I listened to the advice of going on a variety of contraceptive pills, hormone treatments and 7 surgeries, it left me with the same symptoms and problems plus a lovely array of side-effects to go with it!

What I discovered was that there was a way I could look after myself and support my body to alleviate many of the symptoms and that dreaded pain with Endometriosis. It took me a few years to really understand it all but I now live a completely pain and symptom free life with Endometriosis. I want to share what I have learned with as many women as I can… which means sharing my story and finally acknowledging and accepting Endometriosis.

It saddens me so much to hear of women struggling everyday with Endometriosis because I have felt that pain. I have felt the limitation and the lack of understanding. I really wish more women knew that there is a better way.

So, I contribute here at NFW to share my experiences and I created a website and a support network to give women a feeling of empowerment.

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