The Endometriosis Expert and the Patient
To mark the end of Endometriosis month and we wanted to share with you a bumper episode - a guest interview with an expert and a true-life patient story. First up we chat with Andrew Horne - Professor of Gynaecology and Reproductive Sciences at Edinburgh University and an all-around expert when it comes to endometriosis.
Andrew is currently involved in ground-breaking research into a drug treatment trial for endometriosis. He and his team identified that women with endometriosis produce excess lactate in the pelvis, compared to women without the condition, and are trialing a cancer drug to see if this will reduce the lactate levels in these women and reduce the endometrial lesions. Lactate causes pain and therefore reducing lactate may help to reduce the pain experienced by women with endometriosis.
Andrew is also currently recruiting women to be involved in a study looking at the benefits of surgery with regard to improvements in pain and quality of life. This trial will be rolled out among many Endometriosis centers in the UK.
We talk about the main misconceptions surrounding endometriosis and in particular how women are often told that painful periods are normal. Pain is not normal if it impacts your relationship, work, or quality of living. If you feel your pain is not being taken seriously by your doctor – keep going back. If you’re suffering from chronic pain you may find it useful to see a pain psychologist for support.
The symptoms of endometriosis are not just pain. Women can also experience fatigue, pain when passing urine or opening the bowels, painful sex, and infertility. We talked about the frustrations surrounding the lengthy time to diagnosis and the management using pain medications and surgery and where appropriate, complementary therapies can offer some benefit.
Many women are interested in how diet and supplements can impact endometriosis and Andrew is starting to investigate this area, and it will be really interesting to see what comes out of these studies. Keep tuned and you can be sure we’ll be the first to let you know when we hear more! You can hear previous conversations we have had with Endometriosis UK here
Following Andrew, is our chat with Gemma Watts about her lengthy diagnosis from painful periods aged 14 to years of missed opportunities for a diagnosis until she was 31. Gemma had been dismissed at so many points, it was her husband who forced her to go back to the Doctor as her periods were putting her in bed for 2/3 hours. Gemm had been told it was down to her being underweight, that she didn't really have enough symptoms as the pain went after 6 hours and she was told there was still no point in doing a laparoscopy and trying IUI.
In Feb 2020, Gemma worked with Kate and learned more about what was going on with her body and went on to have treatment for 3 IUI’s and on the first scan, at the fertility clinic, she was told she had Endometriosis, despite having always been told this wasn't the case. In fact, Gemma had a large Endometrioma often the only thing you see on a scan.
When Gemma saw someone privately within 5 minutes she was diagnosed with Stage Endometriosis - the most excessive as it's not just in the uterus it can be all over the body
Endometriosis UK says even if you just have 1 symptom - still ask.
Gemma has started talking about it more as she was desperate to find more people to talk to about it and now has found 4 people in her church. She has found Facebook groups can be helpful - but stresses that as with all social media, you need to be in the right mindset ad remember everyone’s stories are different. She is working hard to control the condition with diet, as there is some evidence that gluten/dairy-free, and Gemma has found the...
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