We spoke with Sasha, who at 37 years old, has been on a 22-year journey of pain since her first period began in her teenage years. After a false diagnosis of IBS and false-positive scans, she was officially diagnosed over a three-year journey. But what does post-diagnosis life look like for this mum of two as she balances motherhood, homelife and a hectic career?
My journey started when I was 21 although when I look back I can remember issues when on my period that clearly must have been due to my endometriosis. In 2006 I started experiencing a lot of pain in my pelvic area as well as extreme bloating. I just assumed it was period related as it only affected me whilst on my period. As then months went on the pain became more frequent and I decided to go see my GP who diagnosed me with IBS. Whilst on medication for that the pain continued to the point I could barely lift my head up from my desk at university, so I went back and pushed for another opinion. I was then sent to the hospital for further tests/scans that all came back clear and fine. I was then told I was just unlucky to have painful periods.
In 2008 I joined Cigna (a global health insurance company) and one of the major benefits was private healthcare. As the pain continued daily and I was managing via strong painkillers, getting nowhere with the NHS, I decided to use my insurance and was referred to a specialist in Glasgow. On my first visit as soon as I started describing my symptoms, he said it was endometriosis and scheduled me for a laparoscopy where I was diagnosed. All in it took me about three years, which compared to others wasn’t too bad.
I first noticed symptoms at 21, however looking back I can now see they definitely started much earlier. I remember being put on the pill at 15 due to heavy periods, cramp and very bad mood swings. I am now 37.
I have tried everything from general over the counter pain relief to false menopause. What works for me now is daily use of tramadol to keep the pain at a manageable level as well as maintaining a healthy lifestyle such as eating well and walking. Before lockdown I was weightlifting five days per week and I noticed a massive improvement in my symptoms. I think this was due to being in a better place mentally as when I am stressed or worried, etc I find that my symptoms worsen. When I’m actually on my period I cannot get through it without heat pads or hot water bottles. I also find that I need to get much more sleep than normal, so resting as much as possible helps.
I have tried everything that they can give me. I’ve had seven laparoscopies for ablation of endometriosis, different types of contraceptive pill, coil, painkillers, esmya (which puts you into false menopause), acupuncture, tumeric tablets, and endometriosis diet. All gave me short term relief or a placebo effect. What works now is tramadol and the pill microgynon which I do not take a break from, so I don’t have a period.
That it can be extremely debilitating and for some it controls your life in so many different ways, yet because it is not a visible illness many people find it hard to really understand what you are going through. Also, when we say we are cramping it is 100% not like normal cramp and I feel like this is then downplayed of just how bad the pain really is. I also think it is extremely important for employers to understand and learn more so they can provide their employees with the support they need, as this can be a huge problem and many find that their jobs are impacted significantly.
It has affected it hugely - especially work as I have needed a lot of time off due to flare ups or surgery recovery, and at the beginning of my diagnosis I was constantly referred to occupational health due to a high absence rate. Thankfully in my workplace it is now recognised as a chronic condition and falls within the Disability Act so I am no longer having these issues and they are extremely understanding now. My personal life has been impacted a lot throughout, having to cancel days/nights with friends due to being in pain. I can also get extremely down during these flare ups which can sometimes affect my relationship with my partner as my mood fluctuates.
I found the best resource to be on Instagram. The community on there is amazing and it feels so comforting to see others who are going or have gone through similar experiences. I also find when I get a new medication, I will ask others on here if they have tried it to get real life feedback. I have made many friends in the endometriosis Instagram support space, and I am so thankful for that as in my darkest times I never felt alone. There was always someone who would listen and sometimes that’s just all you need.
Useful resources
Endometriosis UK - https://www.endometriosis-uk.org/
Endometriosis UK Facebook support groups – search on Facebook for your local group
Endometriosis UK Instagram support groups – search on Instagram
The Endo Monologues - https://www.theendomonologues.com/
Trutherus - https://www.instagram.com/trutherus/
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