'I had unnecessary appendix removal while fighting for the right diagnosis... I was medically gaslit'

A woman says she experienced years of "medical gaslighting" and had her appendix unnecessarily removed while battling for the right diagnosis.

Sophie Spindler, 33, was diagnosed with polycystic ovary syndrome (PCOS) a condition that affects how ovaries function in 2006, aged 15, following a painful collapse. Sophie, a recruitment consultant, felt "helpless, scared and lonely" as her "debilitating" symptoms continued over the subsequent years, often confining her to bed - but she knew they were not just PCOS-related.

In her quest for "answers", she said doctors proposed her symptoms could be linked to kidney stones, phantom pain and even appendicitis - inflammation of the appendix - and she underwent surgery to remove her appendix while studying at university. After numerous GP and hospital visits, she underwent a laparoscopy a surgical procedure used to inspect the organs in the abdomen and in 2015, aged 24, she was diagnosed with endometriosis, where tissue similar to the lining of the uterus grows outside the uterus.

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Sophie, from Gloucestershire, and her husband Daniel met one year later, and they soon began trying for a baby but after 18 months without success, they were referred to TFP Oxford Fertility Clinic, where Sophie was informed her chances of conceiving naturally were around just five per cent.

But Sophie and her husband are now proud parents to two boys three-year-old Luca and four-month-old Oakley, born through IVF treatments. Sophie shared with PA Real Life her desire for her sons to grow up respecting women as "fierce and brave" with "strong voices".

She said: "One of the themes in my story is medical gaslighting, not being taken seriously. As women, we're told we're hysterical, we're told it can't be that bad... and that theme, unfortunately, has carried me through my life that women's health doesn't matter.

"I honestly can say that I haven't felt listened to or understood until the very moment I embarked on IVF with TFP Fertility the staff were amazing.

"My endometriosis was essentially left untreated until I was in my 20s when I demanded more answers. You have to advocate for yourself because nobody else is going to do it for you."

Reflecting on her teenage years, Sophie recounted her harrowing experience with severe menstrual pain which began at age 14 - vomiting, an inability to walk, and lying on the floor in agony, though she initially believed this was normal. To manage her intense periods, Sophie started on the contraceptive pill and attempted to continue with her daily life. Yet, each month brought "severe" pain that eventually led to a collapse.

"I went to hospital and they did scans and ultrasounds, and there was a lot of excess fluid around my ovaries," she explained. "Doctors said, 'well, we think that you've probably got polycystic ovaries. To be honest, there's not much you can do about it, it's just something that you're going to have to live with'."

Sophie revealed that the symptoms of her PCOS often left her bedbound, causing her to miss school, and she felt "embarrassed and confused" due to the lack of information and support. While there is no cure for PCOS, symptoms can be managed, but Sophie expressed her frustration and sense of helplessness as "nobody spoke about it".

She described her pain as: "There's this dull, throbbing ache, all through your back, all through your legs, which I thought everybody had. The only way I can describe it is it's like somebody is inside you with a knife, stabbing outwards and inwards... it takes your breath away."

Despite her symptoms being "absolutely debilitating", Sophie admitted she "masked" her pain to avoid being seen as "hysterical". Her condition worsened over time, and she became determined to seek answers, saying: "When I really started listening to my body and my intuition and my own voice... I knew that, actually, I'm not going to take no for an answer."

Sophie said she experienced the most pain while at university, and doctors suggested she had appendicitis, leading to an appendectomy. According to National Institutes of Health, endometriosis in the right lower quadrant can mimic acute appendicitis – but Sophie said she later learned that her appendix was removed unnecessarily.

"It's been almost 20 years of being told, 'it's this. No, it's not. It's this. No, it's not'," she recounted. "I've got scars that I didn't need to have."

Sophie, who was diagnosed with PCOS (polycystic ovary syndrome), underwent a laparoscopy at the age of 24 in 2015, which led to the diagnosis and surgical removal of her endometriosis, bringing her immense relief. In 2016, while on holiday in Greece, Sophie met her future husband, Daniel, and they soon began trying for a child.

After trying to conceive for 18 months without success, Sophie's GP informed them that they qualified for NHS funding for two rounds of IVF treatment. They were referred to TFP Oxford Fertility Clinic, part of one of the UK's largest IVF providers, TFP Fertility.

Further tests revealed that Sophie's endometriosis had returned, her ovaries were polycystic, and her tubes were damaged, reducing their natural conception chances to about five per cent. Additionally, she was told her eggs appeared to be of the quality expected from someone around 40-years-old, leading the consultant to advise them not to delay starting IVF in 2019.

"You feel like your body is just continuing to fail you and not allowing you to do the thing that we're told we're put on this Earth for," Sophie expressed. Sophie found it challenging to maintain hope, but to her surprise, after her first NHS-funded IVF cycle, she fell pregnant and the couple welcomed their first son Luca on November 5 2020.

She recalls looking into Luca's eyes for the first time and thinking: "We've done it, you're real, and this is the start of our whole life together."

In 2023, Sophie and Daniel decided they wanted to try for a second child and after the second round of IVF, which they self-funded and paid around £5,000 for, they welcomed their second son Oakley on May 12 2024. Despite feeling "resentful" of her previous medical experiences and suffering from hyperemesis vomiting during pregnancy she said "these two boys were meant to come to me this way" and she has "soaked up every moment" with them.

She now aims to be a spokesperson for those who do not feel comfortable speaking out and she hopes to one day "create spaces for women to empower them", adding: "Women are superheroes."

Alongside raising awareness of PCOS, endometriosis and infertility, she wants to encourage everyone to "be your own advocate". "If (my story) can even help one person to feel like they're not alone and to be empowered to go and be their own advocate, then I'll scream it from the rooftops, I don't care," she stated.

"I don't care who I make uncomfortable because there are thousands of women everywhere that are uncomfortable every single day of their life, and that doesn't matter? Well, it does to me."

An NHS England spokesperson has emphasised the impact of conditions like endometriosis on women's lives, stating: "Endometriosis and all types of pelvic pain can be very debilitating, and it is important that women are taken seriously to get early diagnosis and offered the most effective treatments."

Additionally, they highlighted efforts to improve care for these conditions by saying: "We have introduced dedicated pelvic health clinics to provide support for endometriosis, and are working with local NHS organisations to develop women's health hubs to provide better menstrual health services."

The spokesperson further acknowledged the ongoing journey towards better healthcare provision, sharing: "We are committed to helping women affected by endometriosis and, while there have been some improvements, we know there is a lot more to do."

For more information on TFP Oxford Fertility, they advised visiting the clinic's website at tfp-fertility.com/en-gb/tfp-oxford-fertility.