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Written by Emily King

31/10/22

Blog

Naomi’s story (1/2) – Chemical menopause

10 mins

If you are someone with a vulva, you have most likely been advised to expect pain at some point, be it due to a sexual interaction or a standard symptom of your menstrual cycle. How then, are we supposed to differentiate between an ‘acceptable’ level of pain and an abnormal level, for which we should seek help?

Up until 2015, Naomi Grundy-Mason was living with what she thought was a bad case of period pain. Really, really bad period pain. This was kept relatively under control with the contraceptive implant, which was a helpful option for her before she went abroad travelling for a few months. When she returned in 2015 her doctor suggested they remove her implant and swap it for a hormonal IUD. Naomi describes what followed as, “constant pelvic pain”, but she wasn’t sure whether the IUD had triggered this flare or if her unknown condition was worsening itself. She spent the next 3 years battling with her GP:

“I got my first referral to a specialist gynecologist in 2018. Before this I went back and forth, back, and forth to my GP. Getting different pain killers, just trying anything. In the end I put my foot down and said this is not normal, I need something. This was when endometriosis was mentioned, and I knew so little about it. I knew so, so little about it. I was a bit lost.”

Endometriosis is a long term, chronic condition which affects 1 in 10 people assigned female at birth. To learn more about the condition read GLORIAH’s last blog. Many people living with the condition know little to nothing about it. Ultimately, this lack of awareness reduces the chance of an early diagnosis and leads to endometriosis being dismissed as a symptom of menstruation. Naomi now runs an Instagram blog (@thechaoticworldofnaomi) where she is part of an endometriosis community and wants to emphasise the impact early diagnoses can have:

“If people recognise endo at an early stage, and we stop telling people that it’s natural to have those crippling period pains or unnaturally heavy periods, you can stop the spread as quickly. If you notice it sooner there’s less chance of it spreading. Unfortunately, the chances are that it will come back, no matter if you have an endo specialist or a general gyne, it’s endo, it comes back, that’s how it is. But I know- through Instagram- so many people that were dismissed and it has completely ravaged their organs. Earlier diagnosis can simply stop that. It can help people before drastic things happen, whether it’s losing the use of their bladder, or in some people their bowel. This could be prevented by earlier diagnosis.”

By the time Naomi turned 33 she was at her “wits end”, being continuously presented with pain killers she had already tried, when she was told about GnRH injections which could help to alleviate her symptoms by chemically inducing a menopause. While she admits that a chemical menopause “was a rabbit hole in itself”, it’s been a positive experience for her:

“It suits me, it’s good for me. Don’t get me wrong, there’s the hot flushes and brain fog, but compared to the pain it’s the lesser of two evils. I’ve also struggled with the fact that within the endo community- it’s quite a wide community- but menopause and menopause support groups on social media are very much aimed at the older generation who are going into it naturally. I’ve been questioned why I want to join as I’m in my 30s, because they don’t realise that there are different reasons that people go into menopause, surgical or chemical. It’s not such an age thing.”

During this time and the huge life changes it brought for Naomi, she still hadn’t received an official diagnosis for endometriosis. Her symptoms and pain matched those of the condition, but she hadn’t had surgery to confirm if any endometriosis tissue was found. Awaiting and going through this surgery, which typically involves laparoscopy so it is minimally invasive, can be a huge cause of anxiety for suspected endometriosis sufferers. An official diagnosis brings a sense of relief to patients; their symptoms will be taken seriously and treated. In 2017, when Naomi was 5 months into her chemical menopause, she approached her consultant to push for a surgery to confirm her diagnosis, so she knew that she was being treated for the right thing, rather than being kept in a menopause needlessly. In 2018 she was given surgery, during which tissue was found and removed. While she experienced pain again just 6 months later, she said that things were easier with the diagnosis, that she “was taken seriously, it made my life a lot easier”.

Naomi experiences significant problems with her ovaries, particularly with ovulation pain. She has known for a while that her and her partner didn’t want children, “It’s not the endo that’s made us say that, that’s just us”, therefore it made sense for her to get them removed completely. However, she has been met with conflict by consultants who insisted that she would change her mind. She said that this created a lot of frustration for her; her self-awareness and life choice were dismissed, all while she suffered extreme pain:

“People have said oh we don’t want to take your ovaries out yet because you’ll change your mind about having children. But no, I won’t. I’m in my late 30s. Ask my own mum, (Naomi laughs), I’ve known my own mind since I was 2! And people keep telling me that I’ll change my mind. I really won’t. That’s not the life I choose to lead, that’s not the life I want.”

Despite the fight Naomi has had to put up over the last decade, she struck me as extremely positive and keen to offer her support to others who may be struggling. You can read more about her journey to surgery and her wonderful advice that just about all of us can benefit from in the follow-up blog, part 2.

Written by Emily King

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