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Sussex Coast Group
Hi, I’m Rachel and I was diagnosed with endometriosis in 2007 after suffering symptoms since 1999. I’ve had several laparoscopies, colonoscopies and eventually a laparotomy and bowel resection which unfortunately has not been the end of my problems with endo. I have been a volunteer with Endometriosis UK since 2008 and enjoy being involved in fundraising and awareness events; recently I did a 10 hour "Karioke"! I wanted to do more and in October 2009 I trained to become a helpline volunteer. On the helpline I often speak to people in Sussex so I decided, with the support of my Mum, Hilary, to set up the Sussex Coast Support Group, based in Hove, East Sussex. |
Rachel, group leader
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Endo can make you feel alone, desperate, lost, hopeless, angry, and frustrated; as I have experienced all of these emotions myself, I wanted to share my experiences of coping with others. I have been treating my Endo with 90% complementary therapy for the past year and feel excited to share my experiences of this with those interested to learn more.
The support group exists in order to provide support, offer advice, information and understanding for those with endometriosis and their families. Whether you've just been diagnosed or have been living with endometriosis for years, these meetings will be an opportunity to meet others living with endometriosis, share experiences, raise awareness and find out more about the condition.
Next meeting:
Date:
Tuesday 31 January [please note that this meeting has been rescheduled from Tuesday 13 February]
Time: 7.00pm
venue: 11th floor of The Tower, Royal Sussex County Hospital, Brighton http://www.bsuh.nhs.uk/hospitals/our-hospitals/royal-sussex-county-hospital/
We are working with a consultant gynaecologist, Jim English, to try and run meetings at the Royal Sussex County hospital. This has several advantages in that it means we can be joined by gynaecology nurses with an interest in endometriosis, as well as benefit from Jim's support and expertise.
Some of you may already know Jim. He has been working in Brighton for the last year or so and specialises in endometriosis and minimal access surgery. He has pioneered radical laparoscopic surgery for endometriosis and has built up experience in dealing with severe bowel endometriosis, which exists in only a small number of centres.
At Endometriosis UK, we have found that, where we are able to work in partnership with local hospitals to run support groups, it has significant benefits not only for the group but also for the hospital services provided to women with endometriosis as there is wider recognition of the need to provide much more than just being seen in clinic. We hope you will be able to join us for this meeting and meet Jim so that he can hear what women with endometriosis would like to see provided for them, and also answer any questions you may have.
This is a very important time for patient groups such as ourselves and also for service providers as the new commissioning arrangements come into place - we would like to see the needs of women with endometriosis at the forefront so please come and make your needs heard!
Contact Rachel on: sussexcoastendo@gmail.com
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