Wellbeing of Women philanthropy manager opens up about her endometriosis journey
Alice Pakenham was diagnosed with endometriosis in 2009 at the age of 20 after years of suffering from immense pain and heavy periods. It was her struggle for answers, and enduring numerous surgeries, that led her to join Wellbeing of Women in the hope other women would not suffer as she has done.
Like many women with endometriosis Alice had fears over her fertility; now at five months pregnant with her first child, Alice has decided to open up about her endometriosis and pregnancy to shine a light on the condition and give hope to other women.
In her own words:
“I had planned to stay private about my pregnancy but with the recent BBC campaign, I have decided to speak out and give hope to those who are suffering. My job at Wellbeing of Women is all about trying to break down stigmas and change peoples’ perceptions of embarrassing taboos, but how can I fight this fight without being open and honest about it myself?
Endometriosis is a crippling disease that has made the past 12 years of my life incredibly challenging.
I knew something was wrong when I started to have extremely heavy periods and crippling pain at 16 years old. It felt like someone was pulling out my insides with a knife and twisting it like a towel, to rinse out the water.
I went to the doctors too many times to count. One time, I was told I couldn’t have children from a gum clinic in Oxford and that I had pelvic inflammatory disease (PID). It was only years later I was told this was a mis-diagnosis – PID is impossible to get if you have never had an STD, which I haven’t.
Two years later, I then decided to pay to see a private doctor as I just couldn’t keep going anymore. In 2014 I got the diagnosis and had surgery, then went on to the pill which helped symptoms.
When I found out it was endometriosis I was confused, I didn’t know what it was but I was glad I didn’t have pelvic inflammatory disease and still had a chance of getting pregnant.
However, it has affected my life, I constantly feel bloated, and in pain which distracts me from wanting to go out. It also can affect my relationships and can be awkward to explain to new partners.
It is as common as diabetes among women, yet it is an under-researched disease and there have been no new treatments for forty years. It takes an average of 7.5 years to diagnose and existing surgical and hormonal treatments are harsh and invasive, with life-changing side effects, such as early menopause and infertility – besides they are often ineffective.
I have had two sets of surgeries, each with two different types of keyhole procedures, over the past seven years after being misdiagnosed for many years before that. I felt miserable and confused as I didn’t know what was wrong with me and I kept thinking that perhaps it was all in my head and that everyone else must be going through the same thing but could handle it better. Why was I failing as a woman?
I had to take endless sick days and pretend that they were due to other illnesses, as I was embarrassed and afraid to speak the truth. I found that if people can’t see a physical wound, it’s very hard for them to understand what you’re going through and have any sympathy.
Suffer in silence
As women, we don’t talk about our embarrassing experiences enough which led me to feel like I had no one to share it with. How wrong I was, and how very glad I am that I discovered the truth of what was going on, when sadly so many young women do not and are still suffering in silence.
Since my last bout of surgery in September 2018, to help relieve me of the consistent pain I was going though, my partner and I decided that if there was ever a chance to get pregnant this would be the time. Especially as I had been told I will suffer from peri-menopause and wouldn’t have many years left to be able to conceive.
Miraculously, nine months later I found out I was five weeks pregnant after having just had my 30th birthday and I could not be happier.
Having grown up over the past 10 years truly believing that I would never be able to have children and that I would be living in constant pain and agony for the rest of my life, I had started to really give up hope of having a family.
As women, we need to be more united and feel free to share our experiences, not just online but with each other in person, as we never know who is suffering in silence. Let’s talk more about the unsexy elements in our lives and help bring together those who are afraid and in pain.
Wellbeing of Women
One of the reasons I wanted to work for Wellbeing of women was because they are one of the only funding bodies in this area.
Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
There is an urgent need to find new treatments to end the physical and psychological suffering of women with endometriosis.
Too many sufferers out there are even contemplating taking their life and tragically some have done as the pain is too much. I decided a few years ago, that I wanted to do everything I could, to help these women.
One of the amazing projects that Wellbeing of Women is funding is Professor Andrew Horne from the University of Edinburgh, whose research promises to bring about the first ever treatment which will allow women with endometriosis to lead normal lives, without pain, and will preserve their fertility”
To find out more about Professor Andrew Horne’s work please click here.