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.

I recently re-typed myself as a Soft Gamine after thinking I was FG for a long time. I know the recs for SG are to go for a skinny jean, but I just can’t stand them and never even enjoyed them when they were in style! For folks who don’t like skinnies, what are you wearing? I have some straight jeans but I think they look soooo baggy on me and make me look ridiculously short even when I cuff them.

Six months ago I had a hysterectomy and oophorectomy at 27. It was a long, harrowing, and sometimes traumatic battle to get there, and I nearly didn’t make it. When I did, I thought my journey with PMDD was over.

I don’t know why I’m writing this. I don’t even know where to begin. It’s all so confusing, and behind the confusion is a very scared little girl who is holding back a lifetime of screams.

I guess I just need a hug.

I’ve been writing publicly about PMDD and reproductive endocrinology for a few years now, and I’ve built up a pretty big platform on social media. Since my surgery involved a big GoFundMe, I promised my lovely community that I’d dedicate the rest of my life to fighting for PMDD research. I wanted to pay forward the kindness and generosity that so many people offered to me. I meant it from the bottom of my heart.

(As it happens, the picture of my silly goofy face hours after surgery is still the second most-viewed post on this sub. I’m proud of that, because maybe it will help someone find their own freedom. If all I get from this life is to make someone else’s life better, then I’ve done everything I came for.)

At first, I put my suspicious PMDD-lite symptoms down to C-PTSD and autism. I’ve been able to experience some phenomenal days, and I’ve felt so much love in the months since my surgery. I’m grateful for the folks in my life who have held my hand through this process.

But that isn’t the whole truth.

In the last few months, the PMDD-lite became PMDD-regular, and then PMDD-heavy, and then I started noticing patterns and tracking symptoms and oh-my-god-it’s-back.

Our working hypothesis is that a little remnant of ovarian cells was left behind during surgery, perhaps due to scar adhesions from the cysts on my left ovary. We think it may be growing and vascularising and producing its own cycle of hormones, and this is why it’s getting worse. I even have period pains in the luteal phase — but of course, I don’t bleed anymore (small mercies, I guess).

This is just a hypothesis. We don’t know anything yet. The cluelessness is like the mouth of a cave that I know I’ll have to walk into.

We’re in the testing phase now. Lots of perfectly timed blood draws (one tomorrow, actually). Results that aren’t positives, but aren’t negatives, either. Serum levels that make us doubt things and feel things and go, “Wait. What…?”

(When I say “we”, I mostly mean my partner and me, btw. I have to give him a shout-out because he’s been the most incredible rock in this storm. He’s taken on the burden of caregiving when we should be looking forward to our future together. I wish I could hug him a thousand times.)

Anyway. If it isn’t ovarian remnant syndrome (ORS), it could still be a very odd reaction to HRT adjustments, or my brain not quite understanding that my ovaries are gone. It doesn’t quite add up, and I can’t really see these differential hypotheses playing out…but there we are. I guess there are lots of differentials — and only by venturing into the cave will we reach an understanding.

ORS makes it simpler because I can have the remnant removed surgically and be on my way. Then again, HRT is tweakable. I don’t know. I don’t know anything.

I thought I knew about this stuff, and in some ways, I think I still do. And then the next moment I feel so terribly lonely and frightened and young. I’ve even started looking and acting like a child, without meaning to. I can’t wait to get therapy soon, even if it just helps me cope with the trauma of this process.

I feel guilty and ashamed, as if I’ve failed everyone. I know I haven’t. It’s just a feeling.

I guess I need a hug from the community that has always supported me.

I live with a chronic illness that impacts my ability to move and find a sustainable regimen. I’m currently waiting to see if I need surgery (I already had a major operation at the beginning of the year…), so most of my fitness is just “do what you can”.

I have 12 years of experience with fitness, with about 9 years of Pilates training. I would say that I try to do some form of pilates or yoga at least 4 days a week, a 30-40 minute walk 3-5 days a week, and some slightly heavier dumbbell work 2-3 days a week.

I have partly South Asian heritage and my bones are super thin (like icicles), plus a risk of osteoporosis on the other side of my family. My illness increases bone density issues, too. I’m also naturally slight and despite having pretty well built muscles, I will never be Lara Croft. I can see myself getting weaker over time, though I’m only 28.

I’m not looking for any major recomp or bulking tips, since most of my fitness is walking and doing very light stuff on the mat…I guess I just need some validation and stories from other chronically ill folks who are experiencing the same things.

It’s hard to feel badass when you’re on the floor.