Endo What?

by - Thursday, December 08, 2016

Often, people associate any pain that a woman has, as being "that time of the month". When in fact, to have normal cramps would be a blessing to anyone who suffers from Endometriosis. Unless you suffer from Endometriosis, it's hard to explain the excruciating pain you'll encounter quite often. So if you say to me "oh , so you get bad periods then", don't take it personally when I pull a "really, did you just say that" face.
For those of you who aren't aware, Endometriosis is not a period, nor is it just cramps. In fact it isn't close to even being really bad cramps. It's a chronic pain caused by internal bleeding and inflammation of tissue (that should normally line inside your uterus). It's most commonly appears in or on your ovaries, bowel, and pelvis; but can spread to almost anywhere - the Endometriosis Institute has reported cases of Endometriosis of the bladder, bowel, liver, lungs, arms, thighs and even brain.
The endometrial tissue will continue to thicken, break down and bleed with your "normal cycle", but because this tissue has formed outside of your uterus, it has no where to go and develops into adhesions (abnormal tissue that binds organs together) and scar tissue.
Symptoms often include (but are not limited to) pain before, during, or after menstruation, during ovulation, when going to the toilet, in the lower back, or during sex. Where endometrial tissue has formed on your bowel or abdomen, you may notice regular diarrhoea or constipation, heavy bleeding or irregular periods (mine can be as minimal as two a year), tiredness and fatigue, and severe abdominal bloating - on a flare up day, my tummy can look like a baby has been growing in there for 5 months.

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Diagnosis takes a lot longer than it should. I first went to the Doctor at my GP in 2010, as I had been suffering from extremely painful, but irregular periods ever since I was taken off the pill (due to a blood condition, I'm unable to take any form of contraceptive). However, before being given a diagnosis, the GP made me undergo countless blood tests, ultrasounds, examinations, a variety of different medications, and gave me multiple potential diagnoses including possible early menopause, IBS, PCOS, and pelvic inflammatory disease (PID). 

I was diagnosed with PCOS following ultrasounds - which explains the reason why I also don't have periods, as PCOS affects your ovulation. Rather than the egg forming and travelling down the Fallopian tube, it stays in your ovaries and forms a cyst. PCOS shouldn't be painful, but can lead to further health problems. However, this diagnosis meant nothing to me, it didn't explain the pain I often had. 

So after continuously nagging, the GP referred me to a gynaecologist, and following some uncomfortable examinations and a laparoscopy, in June 2015, I was finally diagnosed with Stage 3 Endometriosis. This meant I had both Ovarian Endometriosis - of both ovaries and Fallopian tubes; and Deep Infiltrating Endometriosis - of the peritoneum (membrane that lines the abdeomen), uteroscaral ligaments, bowel, uterus and kidneys. Yes I know that sounds like complete jargon, so I hope the below image helps - my diagnosis is between Stage 3 and 4.


Following the diagnostic laparoscopy in 2015, I was booked in for a follow up surgery to hopefully treat Endometriosis, and remove any adhesions.  This happened has recently happened in November 2016, so because of the length of time that had passed, my surgeon told me that the Endometriosis and adhesions on my left ovary, kidney, peritoneum and bowel had worsened, meaning most of the surgery was spent on these delicate areas.

Sadly, there is no known cure for Endometriosis. Although, apparently having a baby helps reduce endometrial tissue and symptoms. But on the contrary, Endometriosis has an extremely high risk of infertility - bit of a kick in the teeth really, the only thing that will cause a massive reduction, if not complete reduction in my pain, is a baby. A baby that I possible can't have (and most definitely can't have naturally), as the stupid disease has taken over my ovaries, pelvis and most of the other important lady organs I'd need. 

There are always a variety options that consultants can discuss to help ease symptoms, although repeat surgery is usually the most common option, she also briefly mentioned hormone replacement therapy (HRT) which will help both my Endometriosis and PCOS, but that is just something that will be discussed for now. I'm due to have a review with my consultant in April to go through the next steps, so I'll be sure to share the results with you as I'm hoping to share my journey, and to help anyone else suffering with Endometriosis. 

*Photos sourced from Pinterest. Clickable link on each image. 

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