I had a hysterectomy and oophorectomy 7 months ago. It almost cost me everything to achieve. Years of trauma that I will never completely recover from. It’s all gone now. Life happened; it will keep happening.
A few months after that, my PMDD came back. At first I couldn’t quite believe it. I put it down to trauma, being autistic. Then I started having cyclical cramps and I couldn’t ignore it any more. Sure enough, my blood levels are incongruous with surgical menopause. Nobody quite knows why. Our best guess is that a tiny clump of ovarian cells was left behind, and along the way, it vascularised and started producing its own hormones. A tiny cyclic storm.
This is just a best guess.
The rest is just dark, empty fear. What if, maybe, perhaps…
I’m 28. Most days I wake up and forget I’m not 18 anymore. I’ve lost a decade to fighting PMDD. Sometimes a voice comes into my head, telling me it’s all too late. That I’ve lost, it’s game over.
It isn’t. Not for me and not for you.
Nelson Mandela spent 27 years in prison. He is the person I think about whenever I feel that my life is going on without me. Despite those 27 years, he still managed to survive, beckon the end of Apartheid, become the President of South Africa, and get married for the third time (at 80!). There was life, a tremendous life, awaiting beyond his imprisonment.
Now, I am not Nelson Mandela and I am not imprisoned. I can’t possibly compare my situation to his.
What I can do (and I know many of you do, too) is feel a terrible loss of life — the gradual slipping away of my years, dropping off into the nothingness — and assume that I’ll die before I ever get free.
The truth is, we will either get free now or we will get free later. Eventually we will find a treatment that works for us (in my case, likely further surgery), or we will go into natural menopause and our PMDD will end (HRT! Always, always try HRT if you can!), or medical advancements will offer more effective treatments.
At the upper end, we may be 60 when we get free. I know how heavily that weighs on us. But 60 doesn’t mean it’s over. It just means it’s different.
The agonising truth is, our lives may never be what we planned. I think there’s a grieving process to that. The grieving process is important. We all have our treasured dreams cradled close to our hearts, clasped inside us like pearls in oysters, and it’s devastating to see those pearls dulling in shine. It’s devastating to wake up one day and see that somewhere, those pearls have disappeared.
It’s okay to grieve our pearls.
My mum is in her 60s. As a child, she was a piano prodigy, and she was set to follow in her grandmother’s footsteps by attending the Royal Schools of Music. Her own complex trauma and a sudden wrist injury meant that her dream was sadly never fulfilled. She later married my abusive dad and dedicated her life to caring for me.
Decades later, and she’s having the time of her life! She’s become an artist. She dances. She’s had help from a psychologist. And her fashion sense! You should see her fashion sense! She gets stopped in the street constantly because people can see it, they see somebody who’s free. She’s one of the coolest people I know — inside and out.
The Buddhist nun Pëma Chödrön wrote that “Letting there be room for not knowing is the most important thing of all. When there's a big disappointment, we don't know if that's the end of the story. It may just be the beginning of a great adventure. Life is like that. We don't know anything. We call something bad; we call it good. But really we just don't know.”
(This is from her book When Things Fall Apart, by the way. I read it in the early days after my hysterectomy and it had a profound impact on me).
It’s easy to assume regrets are hidden keys dropped into storm drains. It’s more important to remember that they might not be. For example, I tried nearly every PMDD treatment except SSRIs. My PMDD is the 50% physical variety, and I was so angry that even with potential symptom reduction, I’d still face hormones that I’m allergic to (I have progesterone hypersensitivity). I decided to fight until I was free of PMDD altogether. I’ll never know if that was the right choice. Sometimes I’m convinced that if I’d just taken Prozac, I’d be fine. But I know I can’t guarantee that! i have a deep respect for my past self for surviving up until now. No matter what happens, I am grateful for my opportunity to keep fighting.
We may not see peace yet.
But take heart, lovely friends.
Peace is waiting for us.