It's emotional for Tassie woman Olivia Shekleton to put into words just how much pain she has experienced over her lifetime.
As a teenager she would complain to her mother about the deep pangs she would feel in her pelvic region, describing it as "a lead balloon in my stomach". Her periods were extremely painful, and she would have to take multiple days off sick per month.
Doctors gave her the best temporary fix they had, without doing the necessary investigative medical work. They put her on the pill at age 17.
"I was sexually active, so the contraception part of being on the pill was relevant. And for the next decade, it alleviated the symptoms — specifically the intense pain and the really heavy bleeding," she tells Mamamia.
By age 30 — after 13 years of being on the pill — Olivia made the decision to get off contraception.
"I had met my partner Rob in my mid-20s, and we were engaged and set to get married very soon. We wanted to start trying to have children, so coming off the pill was a no-brainer."
"But what followed was 10 years of hell."
Watch: women share their stories with pain. Post continues below.
Sex remained pain free after Olivia came off the pill. It was her periods that gradually became unbearable.
"If I'm not on the pill, it's just horrific. As soon as I came off it, it took eight months before I even had a period. Then after that, I had a period that lasted for three months — I was bleeding for three months non-stop. That coincided with my entire wedding and my honeymoon."
By her 30s "the maternal instinct had kicked in" and Olivia was excited to try for a baby.
But she and Rob had trouble conceiving and Olivia felt sure it had something to do with the pain she'd been experiencing since she was a teen.
The next 10 years were filled with countless procedures, internal ultrasounds, referrals to different specialists, different medications and other tests - but doctors were mainly focused on fertility, rather than her pain. They didn't acknowledge a possible link.
"Hope was the killer throughout the whole experience. I would be having these appointments with gynaecologists who would say things like, 'Don't worry you'll be expecting in the next month or so.' They were never really interested in talking about my symptoms or the pain. They just said, 'It's period pain, it's normal.'"
But nothing was normal about what Olivia was experiencing.
"I agreed to try IVF once because I knew I'd regret it if I didn't try. It was so traumatic as I have a phobia of needles. They managed to make two embryos and on the day I was going to have the transfer I was so happy because I had never conceived before. I was walking to work, expecting to do the transfer later that morning when I got the call."
IVF staff informed Olivia that the embryos hadn't advanced as they should. The opportunity was gone.
"That was probably the worst day out of all of it."
In 2020, aged 37, Olivia underwent a laparoscopy. She was then diagnosed with endometriosis.
"After the surgery, my husband was told my diagnosis before me, while I was recovering. I had to wait for him to arrive at the hospital for him to tell me. How crazy is that?"
There was one menstrual period last year that Olivia describes as "four days of torture".
"I always laugh when I see the TikTok videos of men being asked how many tampons a woman uses a day. When I was at my most painful and heaviest flow, I was going through a super tampon in 30 minutes or less. That would then occur over a couple of days. I would bleed through my clothes all the time."
It came to a point where nothing would ease what she was enduring.
"Endone, Palexia, CBD, codeine — none of it even touched the extreme pain I was suffering. I'd had enough and told my GP that I wanted a hysterectomy, and I just told her I wouldn't be taking no for an answer."
This wasn't the first time Olivia had broached the subject of having a hysterectomy with her medical team, but doctors had been reluctant, knowing she wanted children.
But in the end, she knew it was the best decision for her health and wellbeing.
Olivia's GP referred her to a surgeon — the first woman she'd ever had as a specialist — and in April this year, Olivia had her hysterectomy. It went successfully.
Interestingly though, it was an internal ultrasound months before in December 2023 that revealed what was going on in Olivia's reproductive system.
"This ultrasound was far more invasive than any other one I have had before, but it worked far better. The specialist found endometriosis was very visible (and far worse than what the laparoscopy had determined four years prior). They also found fibroids, PCOS, and my uterus was four times too big due to adenomyosis, which had never been mentioned to me before."
While awareness around endometriosis is fortunately at an all-time high, the same can't be said for adenomyosis, which occurs when the tissue that normally lines the uterus (endometrial tissue) grows into the muscular wall of the uterus. It's associated with significant pain.
"After my surgeon did the hysterectomy in April, she said it was the worst case she has ever seen. She said there was no way I could have fallen pregnant as my fallopian tubes were so diseased, and my endometriosis and adenomyosis were extreme."
In the months since the surgery, Olivia has been recovering and is doing really well.
"I'm ecstatic about the life of freedom ahead of me now," says the 41-year-old.
Sadly, Olivia has decided to close the chapter on having kids. She was open to adoption, though the cost associated, the very long waiting list, and the fact very few adoptions take place in Tasmania per year has put her off going down that emotionally arduous road.
"I was trying my hardest, but it just wasn't meant to be. I have such a beautiful loving husband and I couldn't have gone through this without him. It took me a while, but I think I've said goodbye to the dream of having kids. It's taken Rob a bit longer, and that's okay we all have our own time for coping," she tells Mamamia.
Olivia understandably has strong feelings about the failings in healthcare, particularly for women who experience medical gaslighting.
"It's hard to advocate for yourself, but it's important to know pain isn't normal. We know our bodies and we know what's normal. I want people to be able to ask questions and get some answers for themselves," she says.
"It's high time that women and uterus owners have their pain acknowledged and investigated."
Feature Image: Supplied.
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