For 12 years her pain was — at various times — put down to disorders such as IBS, colitis, diverticulosis, polycystic ovarian syndrome, pelvic inflammatory disease, appendicitis and gall bladder disease. A diagnosis of endometriosis in 2018 put a name on her pain but she would go on to feel frustration with the Irish health system.
When she eventually had no other option than to have a hysterectomy at the startlingly young age of 27, she had to undergo the procedure in London because endometriosis isn’t treated with robot-assisted excision here in Ireland.
Specialised diagnostic scanning equipment isn’t available either, which is what led to her repeated misdiagnosis. Jess is now extremely vocal in asking why Irish women are expected to persist with such deficiencies in healthcare.
But first, back to the beginning: “I’ve been dealing with endometriosis since I started my periods” says Jess. “And I was ten when they started. Looking back, I did have really bad periods. At 15, the doctor started me on Ponstan, which is prescribed. If you’re taking anything stronger than over-the-counter medicine that means you have a problem,” she reflects.
“I started getting cysts when I was 15. The pain was always on my right side. GPs would send me home with painkillers. Then the cyst would burst, I’d have a sharp increase in pain and the pain would be gone. The first time it happened I was around 15 and a few times after that it got so bad I’d be hospitalised.
“Sometimes I’d sit it out at home, but by the end of 2016 I was constantly in and out of hospital with the pain from cysts.”
Jess was eventually prescribed Decapeptyl, a drug commonly used to treat prostate cancer as it slows down hormone production. She said the side effects for her were so bad she stopped it after nine months.
Jess’s pain flared back up again in 2018, not always bad enough to go to hospital but by June that year she was admitted. And that wasn’t all she was dealing with either.
“In the middle of all that I’d have a kidney infection once a month. I’d be on antibiotics every three weeks. I just thought I was really unlucky.”
She went to a second gynaecologist — this time at the Mater Hospital — who decided to do exploratory surgery in August, 2018. This gynaecologist found multiple adhesions, so extensive that Jess had a frozen pelvis. The pelvic organs should be able to move internally but in Jess’s case they couldn’ t as they were frozen together with adhesions. It was discovered that her reproductive system was badly damaged — one side especially but even the other side was buried under adhesions. Some of the adhesions — most likely caused by infection — were treated with ablation (burning off the cells) during the procedure and the coil was fitted to try and regulate pain.
But only four weeks later, Jess was back at the same hospital with excruciating abdominal pain, where she was scanned and admitted for ten days. She was transferred to The Bons where she met Dr Matt Hewitt, who she says went above and beyond for her.
She now had a 5cm cyst to deal with.
“The girls were sending me their baby scan pictures and I sent them this. I was trying to laugh my way out of it,” she says.
When she woke up from surgery in October, 2018, she was told that it had been a growth going in through her tube and out into her ovary. The growth was next to blood vessels and arteries that were on the verge of bursting, “in which case it would have been game over”, adds Jess.
One tube and ovary had been removed and the other ovary and tube remained buried in adhesions.
In March, 2019, she underwent her third endometriosis-related surgery to try and get her left ovary and tube out of the adhesions they were stuck in. She was told there would be no guarantees about what could and could not be saved, which was a terrifying thought for a 27-year-old, although as it turns out her surgeon did not remove her remaining reproductive organs, giving consideration to her age and the fact that she had no children.
Afterwards, she was almost three months pain free until she was back in CUMH for a week with unexplained pain in June, 2019. The following month she was back in the Bons having a consultation with a pain specialist. She was put on morphine to be self-administered at home, along with other opiates through patches on the skin. She was put on Gabapentin, a drug commonly used for epilepsy and nerve pain.
“I don’t remember most of the summer. I slept most of that summer. I was housebound. And I had ‘endobelly’ — I had a bigger bump than my pregnant cousin had at the time.”
By that time she’d made contact with a surgeon in London as a result of her own research.
On August 28, 2019, she went for a consultation with Dr Peter Barton Smith on London’s Harley Street. An ultrasound scan revealed issues that she says had not been spotted previously.
It was found that the coil was embedded in her womb and her left side was completely covered in adhesions. Once again, there was a frozen pelvis, for which she had been treated the year before with ablations. There were adhesions behind her womb adhering to her kidneys. Her ovarian function was deemed to be almost non-existent. She had one follicle when she should have had a minimum of 15. Dr Barton Smith recommended a full hysterectomy.
“I was having symptoms of menopause for six months — like hot flushes — and I didn’t realise what they were. I’d gone over there hoping he’d say he’d do an excision (cut out the endometriosis cells). I didn’t expect to hear the words menopause and hysterectomy. It was a shock to my system. I was in a total daze.”
Nevertheless, she decided to go for it and her surgery — via the Da Vinci Robotic system — was scheduled for October 5, 2019, at the Princess Grace Hospital in London. On a Saturday. Jess stresses: “You can’t even get a GP here on a Saturday!”
It was discovered during the operation that she had an infection from a leaking appendix. She’d had it removed in 2015 but had been sick for the previous eight months so it had most likely been leaking for some time. Her problems had been 50/50 caused by infection and endometriosis.
“He started me on HRT straight away afterwards. You basically leave hospital armed with Oxycodone and a script for 22 years of HRT. He wants me to be on it until I am 50. There is a slight chance of breast cancer so every November I’ll go for a mammogram.”
As she recovered, she had time for her mind to wander through all sorts of territory.
“I started to wonder was the pain really that bad? Did I give up too early? Did I make the right decision? Obviously I did. The life I had before wasn’t normal. Endometriosis took so much from me.”
She acknowledges that she got though it all thanks to a tight-knit group of friends and “really good family”.
Jess became godmother to her cousin’s baby Mila, whom she adores. That joy came at the same time that she had to accept she would never be a mother herself.
“I have to tell any future partner that he’s not getting any kids from me. My dad says, ‘anyone who loves you, that won’t matter to them’.”
She admits she is coping better with that aspect now than she did at the start.
“It was like having PTSD (Post Traumatic Stress Disorder). I had all these traumas and I hadn’t dealt with any of them.”
She now feels optimistic, although she says it has taken her a while to get to that point and that it is still “not all sunshine and roses”.
“I’ve been pain free since I came around from the operation. I have zero post-op complications which is unbelievable given I had four surgeries in 13 months, but that is down to the talent of Matt Hewitt and Peter Barton Smith,” she says.
“I’m undergoing physio on my lower back due to the damage caused from how I was carrying my swollen belly for two years. I’m off all pain meds now; the only meds I take is the HRT patch. The change in my life is unbelievable. I’m actually back in the gym weight training.”
Now that she is out the other side of this gruelling journey, she wants to talk loudly about endometriosis.
“I want to give other women hope, show them that there is light at the end of the tunnel. It mightn’t be a hysterectomy for everyone; it might be something else. So many women are going through it and they have to keep quiet about it. Do we still have a hangover from the Catholic Church that we don’t talk about women’s problems?”
She has opened up dialogue through her Surviving Hysterectomy Instagram page but she also still has many questions of her own: “Why couldn’t I have this surgery in this country? If I’m missing put on it, I’m not the only one who is missing out. I remember on the flight going over I cried quietly the whole way. I never got a reason why the Da Vinci robotic arm lying in CUMH couldn’t be used for my hysterectomy. That robot is in a hospital 15 minutes from my house.”
Jess also lives with albinism, a congenital disorder characterised by the complete or partial absence of pigment in the skin, hair and eyes. As a result she has vision problems and cannot see further than five feet. Jess jokes: “Anything that has a 5% chance of happening will happen to me!”
It illustrates her resilience though. Not only did she get through school with the help of SNAs, she continued her education with a Bachelor of Science in Health Promotion at UCC, followed by a Masters in Government in 2016, often studying through pain. Her work life as well as her personal life has been severely disrupted by endometriosis but she already has experience working behind the scenes in politics.
“If the past two years have taught me anything, it’s to seize the day. If I don’t, what was the point of going through all that?”
Endometriosis is a common chronic (long-term) inflammatory condition where tissue, similar to the tissue that normally grows inside the uterus, grows outside of the uterus. The most common places where endometriosis occurs are the ovaries, the fallopian tubes, the bowel, and the areas in front, on the back, and to the sides of the uterus. It can also be found on the bladder and bowel. Endometriosis triggers a chronic inflammatory reaction resulting in pain and adhesions. Adhesions develop when scar tissue attaches separate structures or organs together.
One in every 10 women in Ireland suffer from endometriosis.
Up to 50% of women with infertility have endometriosis.
There is no cure for endometriosis, but there are several treatment and management options.
For more on the condition see: www.endometriosis.ie