A WOMAN who spoke out about her struggle with endometriosis says she is considering setting up a support group in Shetland.
Gemma Graham spoke to Shetland News earlier this year about her battle to have the condition diagnosed, and then treated.
The 32-year-old, who works for NHS Shetland, talked about her endometriosis journey at a meeting of the health board on Tuesday morning.
She is keen to continue to raise awareness of the condition, and wants to support others going through what she experienced.
Graham has taken inspiration from a menopause support group in the south end, which is proving a success, as she thinks about a similar project for those going through their endometriosis journey.
The board also heard that the majority of surgical treatments for endometriosis are now able to be carried out in Shetland.
The NHS defines the chronic condition – affecting around one in ten women of reproductive age – as one where tissue similar to the lining of the womb starts growing in other parts of the body including the ovaries and Fallopian tubes.
It can cause debilitating pain, and symptoms include inflammation, bloating, heavy bleeding and fatigue. It can also affect fertility.
Endometriosis UK says it takes on average eight years from the onset of symptoms before women are diagnosed.
But Graham – who has experienced symptoms since she was a teenager – feels in the last few years there has been a sharp rise in awareness around the condition.
She added that after speaking out earlier this year in the media she has been “inundated” with people getting in touch.
This included, for example, a mother whose 15-year-old daughter was struggling to move due to the pain.
Graham said she herself was unable to walk with crippling pelvic pain when the condition was at its worst – “literally dragging myself to work” sometimes before being told to head back home.
She was originally told it could be IBS. “I felt like I was going crazy, and I was manifesting something in my body,” Graham said about how she knew it was something different.
But thanks to advice from a colleague in the NHS she was finally put on the right track.
Graham told the NHS meeting that a new surgeon based in the isles that happens to specialise in endometriosis carried out a procedure to remove tissue in January.
But surgeons said it had spread to some other areas of her body, meaning the condition will stay.
“It’s hard to comprehend all of that…that your life isn’t your own life, and everything has to be controlled,” Graham said. “It’s life changing.”
The NHS worker added that she was also told she could have PTSD from her struggles with being diagnosed.
She feels that due to a lack of understanding that some people are “essentially being gaslighted by the medical community”.
Graham said “we really need to raise more awareness” of the condition and highlighted how social media is proving a useful tool.
She added that Shetland is in a “very fortunate position now that we have some fantastic surgeons”.
Director of nursing and acute services Kathleen Carolan told the meeting that she is also living with endometriosis.
She felt that areas like gynaecology are still considered taboo – meaning that raising the profile is key.
“We know that women’s health across the UK, [and] globally, has very much been underplayed,” she added.
But in Scotland the situation is improving, she said, with the NHS Inform website for example gearing up to improve its women’s health offering.
Carolan said over the last four years the “majority of surgical work is now done locally” instead of people travelling to Aberdeen.
Graham added that this has resulted in a lot of training and hard work behind the scenes among staff.
Board member Colin Campbell said Graham’s presentation was a “massive eye-opener”, while colleague Lincoln Carroll noted that some men tend to shy away from women’s health.
He stressed the importance of speaking about conditions such as endometriosis in schools, which Graham also supported.
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