Here's what I wish I had known - Emma's letter to her younger self
- Credit: Emma Kemsley
A Newport woman has written an open letter to her younger self about her endometriosis, which has been shared worldwide.
Emma Kemsley wants to encourage women to stand their ground and get a diagnosis.
She also wants to raise awareness of options such as egg freezing, to help women to have children when they are ready.
Emma has stage four endometriosis, a condition where womb tissue grows elsewhere in the body.
Emma said: “People are shocked when I tell them the things I have been through, but a lot of it just seems normal to me.
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"Things like crawling into the doctor’s office on my hands and knees like a zombie from the Walking Dead because of the pain, and the time I nearly died of sepsis because I thought it was just a bad Endo flare.
"I would black out from the pain in the morning and then get up and go to work. That stuff is not normal for most people, but it’s relatable for endo sufferers.”
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She added: “It’s normal to have to wait years for a diagnosis and treatment.
"It’s still, sadly, normal for some doctors to act like there’s nothing wrong with you, or that being in extreme pain every month is just how it goes for women.
“Endo is not simply a bad period. Endo is your insides and even organs fusing together and bleeding. It’s a serious health condition with life-altering consequences.”
Cambridge University Hospitals consultant gynaecologist, Mr Mohamed Mabrouk, said: “As someone with special interests and years of experience in endometriosis and advanced laparoscopic surgery, I would applaud Emma not only for her courage, but the important awareness she has raised of this condition.
“We published a clinical trial which confirmed that surgery for ovarian endometriosis might be associated with reduction in follicular reserve and impairs ovarian function.
"This was demonstrated by the significant decrease in serum levels of Anti Mullerian Hormone (AMH) after laparoscopic cystectomy, compared to the indexes before surgery.
"One of the factors related to this reduction is surgeon's experience and the number of previous surgeries.
“My advice to anyone who has concerns or questions, particularly around the issue of future fertility and the freezing of eggs, is to ensure they speak to their GP and get referred to the appropriate specialised centres.”
Emma's letter to herself is online: https://www.bestfertility-now.com/the-storm-ahead-a-letter-to-my-19-year-old-self-about-endometriosis/