Karen Khan

Karen's Endometriosis Fundraising Page

Fundraising for Endometriosis UK
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Karen Haslam's Fundraising Page, 12 February 2009
Endometriosis UK

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We provide support and information to those affected by endometriosis

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**Rogue cells may be damaging the abdominal organs of 15 per cent of women, and yet little research is being done into this common condition.**

The condition is known as endometriosis and this week is endometriosis awareness week. Below is a brief description of the condition, its symptoms, and diagnosis and treatment. Pass it onto your friends: of every one hundred women you know 10 or 15 may be suffering in silence without realising that there is a name for their condition

Unfortunately little is known about endometriosis. There are a few theories about what causes it, but no way of curing it, other than hysterectomy, which isn't always an effective cure.

What is Endometriosis?

The endometrium is the term used to describe the lining of the womb. The biological role of the womb lining is to provide an environment where a pregnancy can implant and grow. The lining is lost every month when a woman has a period. In most women this lining is confined to the inside of the womb. However in woman with endometriosis the lining is found elsewhere, on the ovaries, the Fallopian tubes, surfaces of the uterus or intestines, and on the lining of the pelvic cavity. In some cases endometriosis has been found on the kidney, bladder and other organs. This migrated endometrium is under hormonal control, so there is "internal bleeding" associated with the period. This can lead on to internal scar tissue formation and adhesions that can attach organs to other organs or the pelvis wall.

**Imagine the pain you would feel if the organs inside your abdomen were fused together?**

Who is affected by endometriosis?

Endometriosis is a common condition. It is estimated that 10-15 per cent of women have the condition, although the exact prevalence of endometriosis is not known, since many women may have the condition and have no symptoms. Endometriosis can start at any age, from the teenage years onwards and can last through a woman's entire reproductive life. In some cases endometriosis continues to cause problems even after menopause due to the adhesions and scar tissue left behind by the disease. The time taken for onset of symptoms to an eventual diagnosis is long as endometriosis can present with a wide variety of symptoms.

**There is an average delay of 9 years before diagnosis of endometriosis. (In my case endometriosis went undiagnosed for 17 years.)**

What causes Endometriosis?

The cause of endometriosis remains uncertain. One theory holds that menstrual blood containing endometrial cells flows back through the fallopian tubes, takes root and grows. Another hypothesis proposes that the bloodstream carries endometrial cells to other sites in the body. Still another theory speculates that a predisposition toward endometriosis may be carried in the genes of certain families. A faulty immune response also may contribute to the development of endometriosis. Other researchers believe that certain cells present within the abdomen in some women retain their ability to become endometrial cells. These same cells were responsible for the growth of the women's reproductive organs at the embryo stage. It's believed that genetic or environmental influences in later life allow these cells to give rise to endometrial tissue outside the uterus.

**Oestrogen feeds endometriosis. Synthetic forms of oestrogen, called xenoestrogens, are found in cleaning products, lotions and shampoos. Many foods contain phytoestrogens, one of the most common of which is soya (or soy). Try and find something in the supermarket that doesn't have soy in it.**

What are the symptoms?

Endometriosis can be mild, moderate or severe, and without treatment, it tends to get worse over time. Some women with endometriosis have no signs and symptoms at all. The main problems are very painful periods, pain during intercourse and a delay in falling pregnant. Other symptoms are chronic pelvic pain, painful ovulation and pain associated with the bladder or bowels. Irregular bleeding may also occur. One of the main reasons that there may be a delay in diagnosis is that many other disease processes have similar symptoms, such as irritable bowel syndrome, pelvic inflammatory disease (PID) or irritable bowel syndrome (IBS), a condition that causes bouts of diarrhoea, constipation and abdominal cramping. IBS can accompany endometriosis, which can complicate the diagnosis.

**The pain of endometriosis often coincides with a period. However, the pain can be experienced at any time of the month, especially when adhesions or scar tissue are present.**

How can endometriosis be diagnosed?

Ultrasound is useful in identifying endometriosis cysts (called endometriomas or 'chocolate' cysts due to their dark brown colour), but the most proven way is for a gynaecologist to perform a "laparoscopy" or keyhole surgery done under general aesthetic, where the endometriosis can be visualised and biopsied. During laparoscopy areas or deposits of endometriosis can be removed surgically. The surgeon may laser away patches of endometriosis and cut through adhesions linking and sticking down organs. However, endometriosis can return.

**Some surgeons are using a brand new technique where the endometriosis is cut away, including part of the affected organ. It is thought that this procedure means the endometriosis is less likely to return.**

Is there treatment?

In order to control the endometriosis, and limit its chances of returning, hormone therapy is usually prescribed. Different types of medication can be used ranging from simple analgesics, the contraceptive pill or a more powerful group called GnRH agonists. The GnRH agonists cause a temporary menopause with all the symptoms of the menopause (hot flushes, etc). Doctors seek to 'turn of' the women's reproductive system in order to stop the endometriosis from spreading. In those women who have a delay in falling pregnant as their main problem, then many of these medications are not suitable. The best management for such women is surgical removal of endometriosis followed by use of assisted reproductive technology (artificial insemination or IVF). In some cases where the woman has already had a family hysterectomy may be an option. If this path is chosen it is crucial that all traces of the disease are removed as adhesions will continue to cause problems even after the hormonal influence ceases. Some times it is recommended that the ovaries are left behind, in which case hormones will continue to affect any endometriosis that is present.

**Some doctors recommend getting pregnant as a 'cure' for endometriosis. Getting pregnant could be a bad move if endometriosis is particularly severe potentially leading to miscarriage.**

How does endometriosis affect fertility?

The reason for impaired fertility may be that endometriosis has distorted normal anatomical structures, such as Fallopian tubes, which transport the eggs from the ovaries, it may also be caused by endometriomas ('chocolate' cysts), and the production of substances (for example, prostanoids, cytokines, and growth factors) which are "hostile" to normal ovulation, fertilization, and implantation.

** Endometriosis is a major cause of infertility. 35-50 per cent of women with fertility problems have endometriosis.** For help and advice go to: http://www.endometriosis.org.uk

About the charity

Endometriosis UK

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RCN 1035810
Over 1.5 million in the UK have endometriosis and the impact of the disease is for some devastating, yet diagnosis takes on average 8 years. With your donations we are turning this around, raising awareness, providing support and information, supporting research, and campaigning for change.

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