Periods, like menopause, is a subject that we’re only just starting to talk about. Groups like Red Box are doing great work knocking down the walls of silence and getting women and young girls the help they need, but what about those women for whom menstruation is a painful ordeal because of endometriosis?
Vicky Chapman, from Arbroath, in Angus, is one of those women. The 31-year-old HR worker has suffered from endometriosis for several years and is using her experience to help others through the Endometriosis UK Dundee support group to help others.
We first “met” on Twitter, before getting to see each other properly during a Zoom Menopause Café at the start of lockdown.
Now I can hear you putting two and two together and wondering why a woman suffering from endometriosis was discussing menopause. Well, Vicky was put through a temporary menopause as part of her treatment, something I had never heard about.
Here’s her story…
How did you discover you had endometriosis?
In March 2017, I started to experience lower back pain that wouldn’t go away. After a few trips to the doctor, my GP suggested checking my cancer markers. These were higher than they should be and I was sent for scans and referred to gynaecology urgently.
After seeing gynae, I was referred for a MRI scan, which showed up suspected endometriosis. I’d never even heard the word before.
I then had to have it confirmed via a diagnostic laparoscopy [a surgical procedure to view a woman’s reproductive organs] a few months later and was diagnosed with severe (Stage IV) endometriosis.
How did the symptoms manifest for you?
Between March and October 2017, when I had the surgery, I had lower back and pelvic pain and my periods seemed to worsen, resulting in me having to take time off work. I lost around a stone and a half time due to being unable to eat full meals.
Looking back, I’d always had heavy but regular periods from the age of 11, severe cramps requiring time off school and work, fatigue, suspected appendicitis and bowel issues when on certain contraceptives. So while my diagnosis didn’t take all that long from when my symptoms started impacting me on a daily basis, I’d started my periods aged 11 and didn’t receive my official diagnosis until I was 29.
On average, endometriosis takes 7.5 years to diagnose.
What treatment did you get and how long did it take to be diagnosed?
Straight after my operation, during which I had an endometrioma “chocolate cyst” [a fluid-filled cyst typically formed deep within the ovaries ] drained, my consultant wanted to put me on Zoladex, an injection that would put me into temporary menopause for three months.
His explanation was that this was my own option, that it would switch off my ovaries and make his job easier for further surgery down the line and that if I chose not to go on it, I could end up with a stoma.
Despite still feeling the effects of the anaesthetic, I refused as he didn’t seem to have the time to explain what it would do to my body, such as side effects, and I wasn’t being scaremongered into it.
By my follow-up appointment, six weeks later I’d come to terms with having to go on this given “it was my only option”. However, he then offered additional treatment options. I wanted to try them before going down the route of temporary menopause and I opted to go on the combined pill.
By Christmas, I was feeling worse than I had been. I ended up in the gynae assessment unit between Christmas and New Year and ended up on Zoladex for a six-month period. I wasn’t offered HRT at any point while on this treatment.
I’ve been on the mini pill since June 2018, which in the main keeps my symptoms at bay as it has continued to stop my periods.
I have to say, Zoladex gave me a quality of life back. The difficulty with endometriosis is it is a complex condition with no cure at present and unfortunately, there is no one treatment that will work for each of us battling with it.
Did menopause affect you?
Despite having not been given HRT while on Zoladex, I don’t recall the side effects being horrendous, but I know this isn’t the case for everyone.
Why did you start your support group?
After being told of my suspected diagnosis, I used the Endometriosis UK website to learn about the condition, along with the Health Unlocked forum to speak to others in a similar situation.
I started attending the Endo Fife group, around 50 miles away from where I live, where I was made to feel very welcome and included. I love that you don’t have to justify yourself at the meetings, you can simply just be. It was after attending this I decided to explore setting up a group in the Dundee area.
And so here I am, doing just that.
Endometriosis UK Dundee Support Group was set up in January 2019 and continues to provide support to people with suspected or diagnosed endometriosis along with their families and friends based in South Aberdeenshire, Angus and Perth as well as Dundee itself.
What do you personally get from the group?
While my symptoms in general are under control, I still live with the condition and all that comes with it. I enjoy being with others who just get it and where no topic of conversation is off-limits. I feel I perhaps missed out when I was first diagnosed due to there being no local support, so I want to ensure there is an awareness of the group and that people know they are not alone in their fight.
What would you like to see happen in the treatment for endometriosis?
Research is ongoing and I hope one day a treatment will be implemented that works for one and all and, in the longer term, a cure for this complex disease.
What do you hope for your future?
In terms of my own future, I hope to continue to raise awareness of the condition and the support group. To date, we haven’t explored our fertility options, but I hope to be brave enough one day to stop my treatment to allow us to do so. It’s a scary thought!
What is endometriosis?
Basically speaking endometriosis is when endometrial tissue, which normally grows in the uterus to prepare the womb for pregnancy, begins growing in other areas, such as your ovaries, fallopian tubes and/or the tissue lining your pelvis.
Each month, your endometrial tissue thickens and grows before, if you’re not pregnant, being shed through your period.
With endometriosis, this happens with the cells growing outside your uterus, too – except the blood has nowhere to escape to. This can cause inflammation, extreme pain and the formation of scar tissue.
Women with it can suffer exceptionally heavy periods, pain during sex, fatigue, bowel and bladder problems and even infertility.
Around 1.5 million women live with this and there is no “cure”.
Many, many thanks to Vicky and the women of Endometriosis UK Dundee support group. If you want more info, click here . You can also follow the group on Twitter.
For more on endometriosis, visit Endometriosis UK.
You can find out more about Menopause Cafés here and sign up for a virtual meeting during lockdown here.