Endometriosis. Heard of it? According to Endometriosis UK, it takes an average of 8 years to diagnose Endometriosis. 1 in 10 women, of reproductive age, are suffering from Endo in the UK.
There is currently no definite cure and its cause is unknown giving women no other choice than to continue living with Endo, fight for treatment and manage the pain whilst searching for solutions.
38-year-old Construction Recruitment Sales Director, Sarah-Jane and 35-year-old Founder of Lacuna Voices, Punteha are living with Endometriosis, along with 176 million women worldwide.
Both women have been hugely successful within their careers with one shining in a male-dominated industry whilst the other flies solo as a freelance journalist as well as running a business to give others a space to showcase their work. Their extraordinary success has been achieved alongside suffering from the second most common gynaecological condition in the UK.
With the average length of diagnosis being 8 years, Punteha certainly exceeded this after having to endure 11 long years of pain and symptoms before her diagnosis was confirmed in her mid-twenties. The 35-year-old was “sent around the houses” and unfortunately ignored like many women.
“There’s a real barrier to diagnosis.”
Punteha Van Terheyden
As there is no known cause for Endo, there are many crossovers of symptoms. People living with it have a whole host of signs that might not even sound like they have anything to do with Endometriosis! As we discussed her own experience, Punteha explained “My most aggravating pain was sciatic pain in my leg and my left ovary was extremely painful.” And as we know, people have different experiences like Sarah-Jane who, from as young as 11, had long and abnormally heavy periods where towels and tampons weren’t enough.
At the age of 17, she had a private laparoscopy which revealed a diagnosis of Endometriosis and Polycystic ovaries, leading to a procedure to remove it by lasering and cutting it out. The procedure was not the end and she had no option but to live with the condition from then on.
Both Punteha and Sarah-Jane fought for their diagnosis. They had to find experienced specialists and gynecologists who knew what they were looking for and could advise on the next steps to manage the condition – because currently all anyone can do is ‘manage’ Endo.
Punteha had to fight to see a gynecologist after enduring steroids, and injections into her spine from being told she was experiencing referred back pain, which was later shown to be in fact Endometriosis after her gynae carried out a laparoscopy.
When thinking back to being 17 and going through her clothes. Sarah-Jane confessed that even in the morning if she’d got out of bed and put a tampon in by the time she’d gone to the toilet it would be dripping down her leg. “All jokes aside, even arguments around things like mattresses people would think I was careless, like can she not put a pad on properly?” There was nothing that she could do.
After her numerous GP visits back and forth, and being dismissed for having ‘a heavy period’, she became aware that feeling like this was how the rest of her life would be, living in chronic pain. Sarah-Jane’ s mum wasn’t happy and was seriously concerned about the impact this was having on her life, she felt the only option at the time was to see a private Gynaecologist who immediately booked her in for a laparoscopy and thats when she recieved the diagnosis immediately. Endometriosis and polycystic ovaries were confirmed.
Endometriosis is a word that Sarah-Jane was completely unaware of before diagnosis. Once she had that diagnosis, she was then able to manage it because she knew WHAT it was and feels lucky that she was diagnosed at a young age.
But the younger years were the worst and to this day she remembers the words that her gynaecologist used to explain how to control her Endo when she was just 17.
“If you don’t water the plant, it will die.”
To be able to manage her Endo, Sales Director Sarah-Jane was advised to take the pill continuously and that’s exactly what she did. This was not a complete answer as she still broke through and bled but in her own words, “I just kind of lived with it to be honest.”
The words ‘you will likely have fertility issues’ stuck with her and she was convinced being a mother would never happen.
Then she fell pregnant at 25 with her son. This was her only ever break from Endometriosis. 9 months of being pregnant meant that Sarah-Jane wasn’t bleeding and that Endo wasn’t affecting her life.
She then decided to have the Mirena coil which was a great treatment plan and worked for her, having no periods for 5 whole years.
COVID hit and during this time, Sarah-Jane was experiencing shooting pains down the back and front of her body. She booked an emergency scan and saw a gynaecologist immediately, as the pain felt like it was affecting her bowel.
The Endometriosis came back full swing and was very active. There was a further shock when the gynaecologist revealed a new diagnosis to the 38-year-old mother. She laughed as she couldn’t even pronounce the name of it. To be honest not many people can, let alone probably know about the condition called Adenomyosis. “I kind of have it double whammy now with both.”
The consultant was straight to the point. There is no cure. With it progressing, unfortunately the only options to cure Sarah-Jane would be to go through menopause or seriously begin to consider a Hysterectomy. The words hit hard. A decision she wasn’t prepared to have to make.
She praised her best friend Jenny for her support during the new diagnosis.
“I feel lucky that I have good people in my life and healthy friendships. You need that.”
Career Decision Time
Endo in not the only thing both these women have in common. They are two of the most ambitious, infectious, and driven individuals you will meet. Although they have to manage their condition daily, they excel in their own fields of work.
By the time Punteha was working on a magazine as Senior Writer and then Commissioning Editor, she was taking a fist full of pills each day and sometimes more than the allowed dose. To just get up out of bed, get showered, and onto the train, she was taking two Nurofen, two paracetamol, and Tramadol. “That was my life. Fists full of pills to try to cope and live in an ableist office environment.”
Taking That Step
At the age of 30, she took the leap to change her job but not by choice. “I was climbing the ladder the ladder and working towards my goals.” As a talented and ambitious journalist, working her way through senior level roles, and having her heart set on becoming Deputy Editor (at least), Punteha had to leave when flexible working hours were not the cards.
After she had her baby, she took a moment to sit back and actually go over everything she, and her body had been through over three years. This included five operations for Endo, three rounds of IVF, and hospitalisation for two weeks in the middle due to side effects. Something had to give and to be able to enjoy having the baby she asked herself, ‘What do I want for my life?’
Working 5 days a week, recovering on evenings and weekends whilst going back onto painkillers just was not going to be the answer and so that was it. Keeping her senior level job and reaching for Deputy Editor was not going to be an option if she went part-time or reduced working hours, a demotion was more of the realistic option. This is a little ironic now as the company which she left now has a more flexible working model after COVID and the working from home dynamic.
But she has gone on to exceed all aspirations and ambitions. Now at the age of 35, Punteha is a proud owner of two businesses as well as being an author to a new e-book that has just launched. She can have flexibility within her work which is essential for better mental health, quality of life, and being in a position to work around her pain.
“It’s actually worked out for the best. I have autonomy to take care of my body.”
Freelance Journalist, Punteha
Having That Drive
Determined to succeed and full of ambition.“Tell me I can’t do it and I’m doing it!” At a time when Sarah-Jane was already adapting to a lot of change with her body, she then fell pregnant. This was the realisation that she needed to move away from the sector she was working in at the time. She has worked her way up to Sales Director and has recently been appointed to the board of directors. She is the only female member! As a single mother, the flexibility her work offered is the reason the ambitious 38-year-old has been able to progress professionally so quickly and made her feel like a mum with a career.
“I feel like I’m flying the flag.”
Sarah-Jane, Construction Recruitment Sales Director
Sarah-Jane, feels a deep sense of pride and achievement to be working high up in a male-dominated industry and wants to make it her mission to see more women climb on up. With determination to never be perceived as being affected by a female ‘condition’ in that industry, she hates to let anything get her down, hold her back or show that she is any different from her colleagues.
“I don’t want anyone living with a disability or chronic illness to be forced out of a market they’re prime for.”
Punteha Van Terheyden, Founder of Lacuna Voices
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