A Common Story

Hello All,

I am new to this forum in an endeavour to find support in living with this condition - I have only recently been diagnosed at the age of 27. The gravity of it has only just hit home and I am struggling with that every day battle to live as normally as possible.

My problems began at age 14 coinciding with the onset of my periods. Even now, I find it frustrating that schools do not educate young women on what a “normal” cycle should look like. I had no idea there was anything wrong for a long time.

My diagnosis came after a 13 year long battle with the NHS. I have been misdiagnosed several times along the way, even after experiencing text book endometriosis symptoms i.e., a ruptured cyst at 19. I was plied with hormones and pain killers, and essentially told to put a hot water bottle on it and keep quiet.

Eventually, after being ignored by my NHS gynaecologist for the millionth time, I paid privately for an investigation and subsequent treatment. I am over the moon with the result, and the fact that I now have a concrete diagnosis.

However, despite expectations, my surgery was not the fairytale ending I had hoped for. I experienced a flare up several weeks after, which enhanced my suspicions that I may have lesions in harder to reach places than I first thought.

I feel like I have dragged myself through life, the same way that I drag myself out of bed every day, knowing that I’m facing another 24 hours of pain and useless sleep. I find it hard to open up to others about the severity of my symptoms in fear of being a “moan”, it has significantly impacted my romantic relationship, and my relationships with friends as I just can’t function the same way that others do.

I would say that it would be a relief to hear that someone else is going through the same thing, but I wouldn’t wish this on my worst enemy! I would love to hear your experiences though, and any experiences that you’ve had with receiving help and support.

[dodgeviperdiva]

hi hun how's u doing today? I'm sorry to hear that ur suffering. we have very similar stories hun it's scary, my list of Symptoms is longer than my arm, if u eva want to talk please give me shout xx

[Hidden in reply to dodgeviperdiva]

Hello dodgeviperdiva (amazing handle),

I'm doing as well as can be - and you?! I've just seen your chat message so I'll reply to you there. Thank you for responding to my post, it's shocking how many women come forward with the same story of being let down over and over again!

[Nikilll in reply to Hidden]

Hi AnnonSKM

if you have extra time means please read my story.

Thanks

[Hidden in reply to Nikilll]

Hello,

I am so sorry to hear that you’ve had such a terrible experience - that must be so difficult for you!

[dodgeviperdiva in reply to Nikilll]

hey hun hope you are well today if you would like to talk gimme a shout xxx

[Nikilll]

Sorry, who is gimme?