Living With Chronic Pelvic Pain
Imagine you’re sitting in a tute at uni on a regular day just like any other. You feel that familiar cramp in your tummy so you excuse yourself to the bathroom where you pull out a tampon. You’ve used one of these bad boys countless times before, you know the drill. Except this time upon inserting that tiny little tampon easily, you’re met with an undeniable wave of white-hot pain inside of your vagina. This is a reality for many women and girls who suffer from pelvic pain and was exactly what happened to Stephanie Anderson in 2010 at the age of 25. An age when you’ve usually got your period and how your vagina functions pretty much sorted.
“I remember going to insert a tampon and having it feel like it was a knife that sliced the inside of my vagina. It felt like the tampon was tearing and burning my insides.”
Stephanie recalls thinking it may have been a particularly bad case of thrush (we’ve all been there), adding it didn’t occur to her at the time that it would actually be the start of an eight year chronic pain journey. Before this, her periods had been fairly regular and uneventful.
Stephanie went to the doctor the next month when the pain hadn’t gone away, hoping that it was her body recovering from surgery after appendicitis. Her GP referred her to a gynaecologist who rushed through her appointments and was largely unhelpful. This was the first of of 8 gynaecologists, 4 GPs, 2 pelvic pain physios, 3 acupuncturists, an osetopath and 3 psychologists to help with her chronic pain.
“That first gyno never even did an examination on me. She put me on the pill and was like, bye!,”.
These frustrating experiences with numerous doctors gave Stephanie the impression that doctors just don’t take women’s pain seriously and she is not alone in this sentiment. If you Google the phrase ‘doctor’s don’t care about women’s pain' you’ll get millions of results and stories.
The first time Stephanie received a diagnosis was 18 months after she had started going to various doctors and specialists, when she was diagnosed with vulvodynia. This is apparently a short length of time for a patient to be diagnosed with vulvodynia, with some women going years without having any answers. However, Stephanie explains that being diagnosed doesn’t really mean much or necessarily reveals a treatment path as vulvodynia literally means ‘pain of the vulva’. It’s a diagnosis of elimination, not an explanation.
“Being diagnosed with vulvodynia gives you a word to describe it, rather than giving you a reason or a course of action,” Stephanie explains, “It can be comforting for a lot of women because they finally have something to call it but it doesn’t really help you deal with it.”
The chronic pelvic pain not only took it’s toll on Stephanie’s body but also her mental health and relationships with other people. She describes feeling melancholy that that friends who have met her in the last eight years she’s suffered with chronic pain, will never know what she was like before the illness was such a big part of her identity.
“Vulvodynia especially has a really bad effect on your mental health because it changes the way that you think of yourself. It f**s up your quality of life because it’s so hard to be in pain every single day.”
At first Stephanie kept her diagnosis between herself and her close friends, thinking that it would be easier to tell her friends than have them wonder why she was sometimes reacting and behaving differently. She specifically mentions not being comfortable telling men at first and not wanting people to think of her as “sexually broken”.
Without a defined treatment route, over the years Stephanie has been prescribed and tried seemingly every treatment under the sun to treat her vulvodynia from antidepressants that only made her more depressed to hypnotherapy to pelvic floor Botox to a pure alcohol injection directly into her vulva. All with little to no effect. Her salvation came in the unlikely form of a chilli cream applied directly onto the vulva. And if that sounds like hell, Stephanie assures me that yeah, it’s not fun.
The good news is now Stephanie’s vulvodynia is now nearly completely under control, though she does experience the odd pain flare up. She credits talking to other women who also suffer from pelvic pain or similar issues to have been invaluable to her throughout the last eight years.
“I would recommend to everyone that has chronic pain to reach out to support groups, even on twitter.”
She urges women who are suffering through illness to not stay quiet about their pain, as maybe we too often do. Stephanie has often used her platform as a writer and editor to share her experiences with chronic pain in the hopes that others won’t feel so isolated on their own journeys.
“Women are taught to be demure and quiet about things, especially when they’re suffering and I think that if you don’t keep quiet everything is a lot easier.”
Here’s to not keeping quiet, Steph.
Words by Alicia Franceschini