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Let's Talk About Endometriosis

In this instalment of 'Let's Talk About Disability', we are talking about endometriosis.

March is Endometriosis Action Month. Endometriosis can have a significant impact on a person's life in a number of ways, including chronic pain, fatigue/lack of energy, depression/isolation, problems with a couple’s sex life/relationships, an inability to conceive, and difficulty in fulfilling work and social commitments. However, with the right endometriosis treatment, many of these issues can be addressed, and the symptoms of endometriosis made more manageable.

There is more information about symptoms and treatments for endometriosis on the NHS website.

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    What is endometriosis?

    In endometriosis, cells similar to the ones in the lining of the womb grow elsewhere in the body. These cells react to the menstrual cycle each month and also bleed. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.

    You can learn more about endometriosis on the Endometriosis UK website.

    How many people have endometriosis?

    In the UK, around 1.5 million women and those assigned female at birth are currently living with the endometriosis. Endometriosis can affect people from puberty to menopause, although the impact may be felt for life.

    Stories from our community

    Learn more by reading the personal story of a staff member below and other personal stories on the Endometriosis UK website.

    "I got diagnosed with endometriosis in 2008 after suffering with many symptoms for years before. It is not something that GP’s were aware of and my symptoms were linked to other conditions such as IBS, anxiety or it’s just what your period is meant to be like.

    My symptoms were extreme pain during ovulation, pelvic pain and cramping before and during my period, heavy bleeding whist on my period, also pain during and after sex. It also caused issues with my bladder and bowel.

    I started off on the combined contraceptive pill to stop my periods but I was still getting the pain (it’s a myth that even through you’re not having a period you can still get pain). I was fed up of taking strong pain killers and wanted something else done.

    A Dr who finally listened to me sent me for various tests Ultrasounds, CT scan and then finally I had a laparoscopy where the surgeon gave me the official diagnosis of endometriosis. Sadly they didn’t take any of the tissue away but it was fantastic to be given a reason for all my years of pain.

    I was advised to go on the progesterone only pill as the combined pill contains oestrogen and this can cause more of the endometriosis tissues to grow. For a while it helped and I stayed on this for years.

    As I knew I had completed my family, (I have been blessed with 2 beautiful sons – as this condition can cause women fertility issues) I decided that I wanted to look into getting a hysterectomy, at the age of 39 this was not something the consultant was happy with at the age I was. I agreed to try out the Mirena coil to see if this would help – I had to have it removed after 6 weeks as it was causing me so much pain and was also making my depression worse.

    The consultant finally decided after I turned 40 that if I was still wanting to have one he would perform a hysterectomy for me. I decided that I would have everything taken out so in November 2014 I had my cervix, womb, fallopian tubes and ovaries. I had to have this performed abdominally as this way they could remove any endometriosis.

    I am really glad that I had this done as when I had my follow up appointment with the consultant he told me that my surgery had taken a while and been complicated as he had found a large fibroid, my bladder was stuck to my bowel, there was endometrioses tissue in a lot of my pelvic area and even in the pouch of douglas (which I’d never even heard of). Although my recovery from the operation wasn’t easy and I went straight into surgical menopause it was the best decision I made. I was advised not to take HRT as it may encourage the endometriosis tissue to start to grow again (they can never fully take it all out) and I also have breast cancer in the family.

    A hysterectomy is not always the answer but for me I have a better quality of life now, I know that some of the pain has stated to return but this can be managed through normal painkillers. I am treating my menopause symptoms with alternative methods and 5 years on I am a much happier person than I have been years ago.

    Through having endometriosis I have found support and friends through social media and been able to raise awareness of this relatively unheard of condition. There has been recently in the news various articles highlighting it and one of my friends was involved in the calendar that was produced to raise awareness to help others. Endometriosis UK ( helped me out enormously and they have online community and a helpline what you can get in touch, I know that it has and will affect many women (and their families) for years to come – but raising awareness of this awful disease is something I am passionate about"

    Anonymous staff member

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