07 September 2006 08:35
A plea has been made for sufferers of a “hidden” disease which affects at least one in four women to get together.
Endometriosis is a painful, chronic disease which is known to affect 25pc of women, but may be suffered by many more who don't realise it.
Jodie Brighten, from Coniston Close, in West Earlham, has suffered from endometriosis for the last three-and-a half years but has been unable to find anyone to talk to who understands what she is going through.
As the nearest support group is in Cambridge, she is now trying to set up a network of sufferers in and around Norwich.
The 25-year-old said: “It can be really quite nasty and does often mean I have to take time off work. Although my family and partner have been very supportive, it can sometimes be hard because unless you suffer from it you cannot be fully aware of the pain it can cause.
“You also have a problem where other women may think you are just complaining about normal period pains, but it is a lot worse than that. It would be really helpful to just have someone to talk to or email who understands.”
Miss Brighten, who works at the Norfolk and Norwich University Hospital, says there was also a lack of understanding of the disease within the medical profession.
She said: “I had to go and see quite a few GPs before they found out what it was. Originally they just believed it was normal period pains.
“It is quite likely that women may think their symptoms are normal when they are not.”
Following her diagnosis, Miss Brighten underwent surgery and hormone treatment, but this has failed to cure the disease.
One known sufferer in the public eye is singer Louise Redknapp, whose subsequent infertility problems meant it took four years for her and husband Jamie, a football pundit, to have a baby.
Despite endometriosis' commonness, very little is known about the cause of the disease. It occurs when the tissue which lines the uterus - the endometrium - is found elsewhere in the body so that when a woman has a period the blood which builds up cannot be shed.
This can result in internal bleeding, inflammation, chronic pain, infertility, fatigue and diarrhoea.
What is endometriosis?
Where the cells that are normally found lining the uterus (the womb) are also found in other areas of the body but usually within the pelvis. Each month this tissue outside of the uterus, under normal hormonal control, is built up and then breaks down and bleeds in the same way as the lining of the uterus. This internal bleeding into the pelvis, unlike a period, has no way of leaving the body. This leads to inflammation, pain and the formation of scar tissue. Endometrial tissue can also be found in the ovary where it can form cysts.
The cause is unknown but several theories have been put forward including retrograde menstruation, lymphatic or circulatory spread, genetic predisposition to the condition, immune dysfunction and environmental causes - such as dioxin exposure.
The more common symptoms of endometriosis include painful and or heavy periods, mood swings, painful sex, infertility, fatigue and problems when opening bowels. It is a common condition which affects two million people in the UK.
The only way to diagnose endometriosis is by a laparoscopy. This is an operation in which a telescope (a laprascope) is inserted into the pelvis via a small cut near the navel. This allows the surgeon to see the pelvic organs and any endometrial implants and cysts. This is normally day surgery.
There are a range of treatments available to women with endometriosis including hormonal treatment, surgery and complementary therapies.
The National Endometriosis Society helpline is on 0808 8082227. The group's website address is at www.endo.org.uk
Miss Brighten can be contacted via e-mail at firstname.lastname@example.org
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