Endometriosis Awareness Month - Part 1

March is Endometriosis Awareness Month. Although this blog is mostly about my journey with Crohn’s Disease, “Endo” played a huge part in my journey towards having a hysterectomy and still plays a role in my life five years on. As there is a lot of misconception about what Endo is, I figure that it deserves a few posts on this blog. Please note that none of this is medical advice, just my understanding and witterings about the condition.

For more formal information, Endometrosis UK is good http://endometriosis-uk.org/understanding-endometriosis, as is one of my favourite blogs - http://endo-update.blogspot.co.uk/2011/07/facts-about-endometriosis_22.html

Endometriosis is an enigma. It is a deeply misunderstood condition of the female reproductive organs and pelvis that can cause intense pain, heavy bleeding, sexual dysfunction and scaring. It is one of the leading causes of female infertility. It can also affect the non-reproductive parts of the pelvis, such as the bladder, bowels and uterosacral ligaments. It has also been known to affect other parts of the body, including the kidneys and liver.

Here's a not so pretty diagram

Endometriosis is when the cells similar to the endometrium inside the uterus show up in places they don’t belong, such as on the ovaries, in the fallopian tubes or attached to the pelvic wall. These clusters of cells can range in size from microscopic to several centimetres. When your ovaries send out the hormones to prepare your body to have a period, these misplaced cells do exactly what the endometrium does; it swells and causes inflamation, which can eventually lead to scaring. This is often known as adhesions, which as the name suggests, can “stick” various things together, such as attaching the uterus to the bowels.

One of the many problems with Endo is that the "gold standard" in diagnosis is laparoscopy, which means that the only way to officially diagnose it is through surgery. There are several obvious problems with this, as all surgery has risks, but one of the big ones is that it effectively comes down to the skill of the surgeon in knowing what they are looking for. For example, there is a common misconception that all Endo lesions will look like “chocolate cysts” as they are known, but in reality they can be red, pink, white or clear and easy to miss. Also, the lesions can be so small that they are not easily visualised with the current technology available. Most gyanes know how to do a lap, but not all gyanes really know Endo.

One of the most bizarre things about Endo is that the presentation of the disease has no correlation to the symptoms experienced. Endo is often talked about in stages http://www.hopkinsmedicine.org/healthlibrary/conditions/gynecological_health/endometriosis_85,P00573/. Broadly, stage 1 Endo is roughly classified as having few surface lesions in one place and minimal scaring; stage 4 Endo is classified as being widespread affecting many areas, with deep infiltrating lesions which have damaged the surrounding tissue and caused extensive adhesions. However, having stage 1 Endo does not necessarily mean that your symptoms are mild. You can have stage 1 Endo and debilitating pain. Alternatively, I knew a woman who had hardly any symptoms at all and was diagnosed with stage 4 Endo during infertility investigations. As I said, Endo is an enigma.

The cause of Endo is ultimately unknown. Loads of theories abound, but ultimately, the cause remains something of a mystery. http://endometriosis-uk.org/causes-endometriosis

Treatment for Endo is a complicated subject. Many GPs will initially try to treat the symptoms using the birth control pill. If this works, great! If you don’t get on with the pill (like me), it’s not so great. The next line of treatment are heavy weight hormone treatments which effectively put you into artificial menopause. The trouble is that these drugs come with horrendous, and sometimes life changing side effects. I won’t get into the controversies about them in this post, but there are many. Surgery is generally seen as the best treatment option, but like diagnosis, this comes back to the skill of the surgeon. On top of that, cutting it out doesn’t mean that it won’t grow back, and it often does. Despite conventional wisdom, a hysterectomy is NOT a cure for Endometriosis. It might help alleviates symptoms for some women, but if the Endo isn’t removed at the same time, you still have Endo.

Lots of Endo women turn their back on conventional medicine for treatment and pursue complimentary and alternative treatments. I won’t get into those controversies in this post either. The bottom line is that it is very tricky to treat. Ultimately, like so many other long term, chronic health conditions like Crohn’s Disease, you need to find what works for you. We’re all individuals and what works for one may not work for another.

There are a lot of myths about Endo. I would write a post about it, but I think that one of my favourite blogs says it much better than I ever will - http://endo-update.blogspot.co.uk/search/label/myths

I’ll do a few more posts on this subject over the coming month.