Living with an Invisible Illness: Libby’s Story

In May 2017, I was diagnosed with Endometriosis. A disease which on average takes 7 years to get diagnosed. A disease which 1 in 10 women suffer from. A disease women get mid-diagnosed from as it has so many similar side effects to other illnesses. A disease which is listed one of the top 20 most painful illnesses in the U.K.

So what is Endometriosis?

“Endometriosis is a medical condition that occurs when the lining of the uterus, called the endometrium, grows in other places, such as the Fallopian tubes, ovaries or along the pelvis. When that lining breaks down, like the regular lining in the uterus that produces the menstruation, it has nowhere to go. This causes cysts, heavy periods, severe cramps and even infertility. The endometrial tissue may also grow in the vagina, cervix, bowel or bladder, and in rare cases it may spread to other parts of the body, such as the lungs. The most common symptom of endometriosis is cramping during menstruation, which can get worse over time, and can be debilitating. The pain is due to internal bleeding from the lining being shed inside the body — in a place where it doesn’t belong — and can also lead to scar tissue formation, blocked Fallopian tubes, and bowel problems“

Many women have described the pain as being “stabbed continuously, having your insides pulled out, being wrapped in barbed wire or having contractions”

One of the worst things about this disease is not only the fact we need more specialist doctors but we need to raise money to find a cure! Many women under the age of 40 are undergoing a full hysterectomy just to help ease the pain, and even then it can still grow back in places such as the lungs.

So what can you do?

On the 19th April, I am running the Brighton Full Marathon! All in aid of raising awareness and also money to help towards finding a cure, so more women can live a better life!

A bit about my story and experience….

Having suffered with “bad period pains” since the age of 12 and knowing no different I had always been put on different types of contraception to help “control” the pain. As the years went on and from the age of roughly 17 the pain and symptoms were becoming worse. I became a regular at the doctors, receiving different types of pain relief. After many trips to the hospital and gynaecologist they finally agreed to do a laparoscopy in 2017 at the age of 22. This is currently the only way to fully diagnose endometriosis. They agreed as the disease also runs in my family so there was a high chance of me having it.
After my first laparoscopy and the surgeon finding endometriosis they lasered what they could away, however only 18 months later it started to grow back. I ended up back in A&E in severe pain, with more scans and tests it became apparent it had grown back yet again! I was told by doctors that I have a few options left, I either have the coil, have it lasered again however this reduces my fertility or have my cyst removed which also comes with the risk of having my ovary removed. At the age of 24 this seemed to much of a high risk as all I wish for one day is to be a Mother, I opted for the coil, which has slightly helped, but I’m still in pain approx 5/7 days.

Training for a marathon has been tough, especially as I’m in pain, but I’m determined to make more people aware and make a difference. Please visit my Just Giving page:

Story from Libby Tucker

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