Neha's story- My Journey With Endometriosis

Asian woman with glasses in black top

Hey, I’m neha and I'm 23 from the U.K. I suffer from a chronic invisible illness called endometriosis. It is a gynaecological condition where tissues similar to the lining of the womb grow in other places, such as the ovaries and fallopian tubes. It causes debilitating pain, chronic fatigue, many more symptoms and can lead to infertility. There is no cure and we have very limited treatments, all of which can have severe consequences.

It took me 9 years to talk about my illness openly because as an Indian female having illnesses that affect your fertility is seen as a big taboo and the community would see us as tainted. They don’t think about how these conditions affect us but instead whether or not we will be able to get married. But now I don’t care what people will think of me, if sharing my story can only even help one person feel understood and less alone, it’s worth the “shame” for me. There are so many people that are going undiagnosed and if we don’t talk about these types of conditions it can severely impact a person quality of life.

Making an awareness Instagram page for my illness @_endoaware_ was one of the hardest and most rewarding things I’ve ever done. Being able to talk about my journey and being able to help and support people in similar situations to me is the most important thing. 
My adolescence was taken away by this illness and the doctors who had the duty to help me would only just shut me down and label me as a hypochondriac. The only person I had was my nanima (maternal grandma) who believed my pain but because the doctors were saying there was nothing wrong with me all she could do was try and make me comfortable.
Asian woman in grey tank top with glasses
Photo above: Neha from @_endoaware_
My family were unaware of conditions like endometriosis so they didn't realise how serious my pain was. However I do not hold any resentment to anyone that did not believe me because I accepted that such things are not spoken about enough within society and especially in South Asian culture. If anything it has fuelled me to educate and create more awareness for my condition and how much it can affect someone mentally. I made my endometriosis page to make sure no one has to suffer alone due to no-one believing them.
I fight my body and mind daily, I can openly say that I had denied myself happiness for a very long time as I felt I didn't deserve it. To be completely honest sometimes I am still guilty of it. But I always need to remember that I am a strong, beautiful, powerful and resilient woman.

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