Living with Endometriosis

Living with Endometriosis

At the age of 21, I was diagnosed with a disease called Endometriosis. Now some of you may know what this is, most of you wont.

Endometriosis is a painful disorder which causes the tissue that usually lines the inside of your uterus grows outside of your uterus. Meaning these tissues cling to other organs in your body, commonly your ovaries, bowel & pelvis.

The tissue acts as it normally would inside the uterus - thickens, breaks down during your cycle & bleeds. However the broken down tissue has no where to go, causing scar tissue, adhesion's & endometriomas (cysts). These symptoms can cause organs to stick to one another, regular pain, infertility (you get the gyst). 

Now I have always suffered with severe periods since they began at the age of 11, they were often very heavy and painful causing me to have to go home from school. This went on for years until I went on the pill (contraceptive pill) - this helped my periods calm down a lot. 

When I was 19 I was diagnosed with under active thyroid - now I am not sure if these health issues are linked but my health seemed to go down hill from this point. Sex started to get painful, periods were heavy and I was often doubled over in pain ready to go to hospital.

My doctor finally referred me to the hospital for a scan, which revealed I had a chocolate cyst (a blood filled cyst) on my left ovary. I was then referred to surgery as this suggested I had endo. 

Waking up after my first laparoscopy wasn't particularly pleasant,my heart rate was high and the surgeon decided to talk to me when I was coming round, luckily my mum was with me.

The surgeon was a female and she looked very emotional - she told me I had severe endometriosis and my bowel, kidneys etc were covered, I was devastated and cried. Now she was not a specialist so I was then referred to Pool hospital where there is a surgeon who specialised in Endometriosis.

My second surgery involved the removal of the cyst so a little more painful, however most of my endo was on my bowel,causing my bowel and uterus to be stuck together hence the pain I was in. My last surgery was quite serious, involving a bowel surgeon in case i had to have any of my bowel removed along with my regular surgeon. 

This apparently went well, I found that i was given little information about the surgery, my bowel didn't have to have any part removed & they removed what they wanted to.

Do I feel better?

I really wish i could write this with a light heart and say my life has changed so much and I am pain free but sadly it isn't. My pain went for a few weeks but I feel I am in regular pain daily now, sex is something I dread - not because I don't love my partner but because of the pain and lack of self confidence I now have. I feel low on a daily basis, losing interest in my hobbies (like writing blog posts, doing make-up etc) 

This disorder is something woman have to live with on a daily basis, not knowing whether they will be able to make their own children or even carry them long enough to see them. Having people ask when you will be having kids is such a heartbreaking question that you get regularly. Pain causes you to miss out on social events, work & daily life activities. 

So little is known about this horrible disease and no support in the work place is causing others to lose their jobs. I am lucky to be in a job where they are understanding with my disease.

If you know anyone with this disorder or any other chronic illness please spread awareness and remember to take care of them as most will be suffering in silence!

Love Jess xx