You are not alone
The most important part of managing any chronic illness is knowing that you are not alone, that there are others learning to manage and live with similar obstacles and experiences.
Everybody diagnosed with Endometriosis will have a different story, different symptoms maybe or treatment, different worries and concerns.... but by sharing our stories we can help break down the walls of taboo and help each other through our Endometriosis Journey.
Here is my story, if you would like to send me yours I will add it to the webpage.
I have had gynaecological problems since I was 19 – I’m 37 now. I had two cervical cancer scares in my early twenties, and had a difficult time starting a family. In 2004, my first child was born very premature and unfortunately passed away. My second child was born at 33 weeks, and spent some time in special care. My last child was born at 35 weeks with the help of a stitch keeping my cervix closed.
I hoped that after my troublesome problems, I would be able to finally gather my health and enjoy my family. Unfortunately, this has not been the case as I began struggling with irregular bleeding, fatigue, and pain during sex. I assumed this could be an infection and went to see my GP who gave me antibiotics. My problems persisted, so I made a tearful visit to my GP asking for help, and was referred to see a gynaecologist. My gynaecologist referred me for a Laparoscopy (because of my history), the results of which; I received in January 2008.
My Consultation in January was brief and provided no allowance that I knew nothing about Endometriosis; I had never heard of it before in all my long history. I was prescribed the hormone treatment Zoladex, which shuts down the ovaries and creates a fake menopause, and HRT to add the oestrogen back into my body and alleviate my menopausal symptoms. I was given no information other than a leaflet from inside the medicine box, and a review appointment in four month’s time.
I went home worried and upset at the lack of support I had been given, and that there was no attempt made at providing me with help finding further information and advice. I just could not believe that this was the normal situation experienced by women diagnosed with Endometriosis.
This was my motivation for setting up a Local Support Group run through Endometriosis UK. I believe that women, when diagnosed, should be made aware that there is a support network available with advice and legitimate information, and that there are other women who are also going through similar, and that are willing to share and support one another during a very emotionally and physically difficult time.
I held the first group meeting in June 2008, and although it has been difficult at times due to continuing ill health, I have continued to provide a local support network that facilitates discussion, mutual support, information and encouragement.
During these years I have met some incredible women, women who deal everyday with pain, fatigue, anxiety and who face continued challenges within their daily lives. I have learnt that Endometriosis can have a devastating impact on every aspect of being a woman; as a mother, partner, friend or employee.
I have also learned that Endometriosis presents differently for every individual, and that there are a variety of symptoms such as Painful and Heavy Periods, Fatigue, IBS / Bowel difficulty, Pain during Sex and Infertility. On diagnosis, I was not made aware of the various symptoms and it was only through the information on the Endometriosis UK website did I learn the full extent of my illness, and was able to address my symptoms holistically. Additionally, emailing and meeting others through the support group further confirmed additional commonalities such as leg pain, back ache and nausea.
My health unfortunately is still being affected greatly by Endometriosis and often I find my symptoms (especially pain and fatigue) overwhelming. On diagnosis I didn’t realise that my health would deteriorate, that I would have several surgeries and reply upon daily pain medication; I didn’t understand that Endometriosis, for me, would be a long-term Chronic disease.
I am now trying Psychological Services, Physiotherapy and Mindfulness as ways of trying to better understand and take control of my illness.
However, because of Endometriosis UK I know that I am not alone. This has given me strength to continue to raise awareness, to raise funds, to plan meetings and to help others. I recently achieved an MA in Visual Arts and dedicated my studio practice to the theme of living with Endometriosis, using my art to express ‘How it feels’ living with this disease and to raise both awareness and understanding.
I know that I might not get better in the short-term but by being pro-active and helping others I am working to a positive future.