Living with endometriosis: Sandi's story
Sandi Monger experienced a variety of very difficult symptoms for six years before being diagnosed with endometriosis. She shares her story of living with this life-changing condition.
Unfortunately, misdiagnosis is very common in people with endometriosis.
What was your journey to diagnosis like?
Over the six years between first going to the doctor and eventually getting my diagnosis, I changed GP practices three times, visited three different hospitals and saw around 20 different doctors and physiotherapists.
One factor that delayed my diagnosis of endometriosis was that I was wrongly diagnosed with other issues. In 2012, I was misdiagnosed with hip impingement; in 2014 with a slipped disc.
In 2015 I had X-Rays and once again I was told I had hip impingement, yet two years later tests showed I was fine.
So, I was misdiagnosed a number of times, even though in each instance I had had scans such as X-Rays and MRIs. I even had courses of physiotherapy to treat the issues.
Unfortunately, misdiagnosis is very common in people with endometriosis. Sometimes pelvic issues are experienced as hip pain. For me, misdiagnosis meant a delay in correctly identifying endometriosis.
In 2016 I had a laparoscopy to remove a cyst on my ovary and it was during that operation that they found endometriosis. However, it was still three years before I had my first surgery for the condition. During that time I was put on birth control.
In 2019 I had a laparoscopy to remove endometriosis, but they weren’t able to remove all of it. So now I am waiting to see what can be done.
How does endometriosis affect you physically?
I have so many symptoms due to endometriosis, it’s very difficult.
Prolonged bleeding, irregular bleeding, bleeding after sex. Sometimes I have bleed after a knock or pressure on my abdomen.
My periods are very painful but I also have pelvic pain when I’m not on my period and sex is painful too. I have ovary pains and I’ve had ovarian cysts.
It’s not just pelvic pain, either. I suffer from back ache and sciatica.
Bowel movements are often painful and sometimes I pass blood with them. I have a stinging sensation when I urinate, too.
Have you found ways to manage your symptoms?
I have tried so many things, and while I still do struggle, I have found things that help somewhat.
I had to try many medications (hormonal and painkillers) but I have found some that help. In particular I am now on medication to stop my periods, which has reduced my symptoms.
Aside from medication, I use heat pads, I have lavender baths and I stick to wearing comfy clothes.
Has living with endometriosis affected your mental wellbeing?
Yes. Endometriosis has had an impact on my family members as well as me. I don’t have many friends and it has caused the end of numerous relationships.
It’s had a significant impact on my life and on the people around me and I’ve had to have therapy to help me deal with it.
I would also advise people to seek a specialist as soon as possible. Find a surgeon with a special interest who practices excision surgery.
Do you have any advice for people who have (or think they may have) endometriosis?
I wish I had known about endometriosis earlier. Knowing about the condition is so important. You have to be your own advocate.
I would also advise people to seek a specialist as soon as possible. Find a surgeon with a special interest who practices excision surgery. There are also BSGE centres, which are special clinics set up to offer excellent care for endometriosis.
Don’t settle for anything less than great care from a specialist. You deserve it.
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