The Decision
Long Read By Kim Cormack (Trustee)
I knew it was coming. Since my first, life changing consultation with Dr Khan in 2021, I was fully aware that this decision had to be made. For nearly four years, the numerous 1-2-1 conversations with my nearest and dearest, friends and family members, with Dr Khan at our Biannual (or quarterly, depending on my symptoms) meetings, the internal conversations beyond numerous; more akin to an ongoing duologue that has nearly always been playing in the background whether I engage or not.
Now that the decision is here, I feel able to really sit with it. Write it down in black and white. Try to decipher the many feelings and thoughts and concerns and hopes. Try to honour each of them; know that when I look back, I can say I truly listened and gave space to every aspect of this before making the decision. Try to accept that, inevitably, at atleast one point in the future, I will doubt my choice.
On the 20th December 2024, I had my scheduled meeting with Mr Khan at the Birmingham Women’s Hospital. Brain fog was REAL that day as I had assumed I was going in for my monthly Prostap injection. When I realised it was this meeting, with this wonderful human, I was pleasantly surprised. (All of the staff in the Gynae Outpatients are lovely, by the way, but as lovely as they are I am still very aware that I am getting a friggin’ needle in my arm. So it does dampen the experience…marginally.)
I could sing the praises of this team all day but, as a woman with acute PMDD and ADHD, I am fully aware that if I go off track now I will struggle to find it again.
The discussion, as usual, was around my symptoms and if the treatment (Prostap and add back HRT) was still working. How I was finding HRT etc. We discussed the highs and lows. How in many ways, the treatment had changed my life. We discussed how I was when I first walked into the consultation room just three and a half (ish) years ago; exhausted, distraught, deeply depressed, in chronic pain, scared, hopeless. It’s hard to fully remember the earlier, darker days with PMDD. Partly because of brain fog, partly because the worst (pre diagnosis) was during Covid Lockdown (and I’ve found that most of us have sketchy memories of that surreal period), but also, it’s likely that my brain is doing me a solid by not remembering just how low I got.
There’s no doubt that starting Prostap, meeting the team, getting real support (including therapy), doing my own research and finding ways to communicate with friends and family about how PMDD affects me, has drastically improved my life. Scrap that. It’s been lifesaving.
All of this said, Mr Khan and I know that, even though the treatment gives me some reprieve from constant, overwhelming symptoms, it does not irradicate them entirely. I still have PMDD. I can’t predict when I will have the more debilitating symptoms usually associated with the luteal phase of my menstrual cycle because Prostap stops my menstrual cycle. I don’t have periods. In some ways, I have sometimes wished that I could predict when it was going to happen, though nothing truly prepares you for the “dips.”
I call them “dips”. An oversimplified term, disappointingly very little to do with guacamole, that I suppose I have subconsciously adopted to minimise discomfort in others who nonchalantly ask me “How have you been?” or “You were missing in action for a bit there, what’s been up?” Part of me feels that I should stop doing this. That I should be fearless and honest and fight the stigma that is so…very…real around mental, hormonal and general women’s health.
Sometimes I want to be that advocate, that strong, armoured, fearless warrior woman; a Boudicca of Women’s health if you will. I want to say with complete confidence, without an ounce of shame or fear.
Robert Havell, The Costume of the Original Inhabitants of the British Islands (1821)
“I haven’t been well. I have a condition where my ovaries produce completely normal hormones, and my brain reacts to them abnormally.
When it gets bad, I feel like I am going insane. There’s the cramping, the migraines, the aches all over my body. The insomnia, confusion, brain fog, paranoia and the deep, bottomless depression that takes your breath away.
The constant torturous playing of vicious, spiteful, cutting self-assessments and matter-of-fact statements about how I should kill myself. On repeat. At full volume. And sometimes, I am so exhausted and scared of my own brain that I can’t gather the clarity or strength to fight those thoughts, and I need help.
Sometimes the help helps, other times it doesn’t.
And in those times, all I can do is make sure at least one person knows what’s going on and then stay as completely still as I can be. Because if I am still, I am safe. And then, by magic, sometimes hours, sometimes days later, it stops. I am me again. Confident, joking, dancing, playing with my dog, meeting friends, eating, bathing…functioning.
There is a reasonable part of my mind that tells me that most people only ask how other people are out of a passing interest or politeness. They have their own issues; they don’t need to hear mine. There is the part of my mind that is furious that we still live in a society that can’t talk openly about our mental health, as if our lives didn’t depend on it. It does.
There is part of me that knows full well that, though the likelihood of me being sent to some Victorian insane asylum and locked away as “another hysterical woman” is fairly low, we still live in a world where misogyny is rife.
To get back on track…
The decision about whether or not to have a full hysterectomy is here. Along with the multitude of follow up questions brought about by either option.
No? Then I can choose to be on Prostap and add back HRT for as long as I need, but if the past few years are anything to go by (the suicidal ideation, suicidal plans etc) won’t stop. Still won’t be predictable (No periods = no luteal phase) After 2-3 particularly scary close encounters with the worst of these symptoms in the past few years,this isn’t a healthy or responsible option, right? Right?
Because of the state of our Mental Health care in the UK, the lack of funding, the lack of understanding from crisis lines, paramedics, mental health practitioners, GPs, because of the 12+ hour waits in no-mans-land A & E departments, waiting for emergency care and a Psychiatric Practitioner… because of all of this… next time I may not be so lucky.
No? Well, I’ll still have a womb and ovaries. Congrats, me! I could still physically conceive, carry and birth a human child.
But (big but), I would have to come off the Prostap treatment for 6 months to a year in order to get my “normal” menstrual cycle back before trying for a baby.
Not to mention the question mark around being on SSRIs whilst pregnant.
Or the hormone changes during pregnancy.
Or after the birth.
For someone whose brain is highly sensitive and reacts abnormally to hormones (naturally released by ovaries or via HRT) … well, it’s a thought that… yeh. It scares the shit out of me.
I explain this to a few friends and family.
Most understand. It’s not really a question. My life, wellbeing, safety comes above having my own biological child. One or two struggle to understand.
“But everyone’s hormones go a bit doolally around pregnancy. It’s worth it in the end.”
I can’t help but seethe (inwardly). If those one or two friends had witnessed my PMDD symptoms at their worst. Had they been with me during the early morning hours in A&E; numb, exhausted and scared, trying to keep myself safe and calm. Had they been the friend that stayed in my room, squeezing my hand and reassuring me whilst I cried for hours until I could sleep. If they were… perhaps I’d trust their judgement more readily. I can’t help but feel disappointed, whilst understanding their good intentions, that they believe having my own biological child would be more important than my immediate safety (and therefore that of a child’s).
Then, I have moments where I’m probably gaslighting myself. Maybe this is “all in my head.” Maybe it’s all “just depression”. Maybe pregnancy hormones will actually help? Maybe I will find the love of my life far more easily if I can bare their seed (that phrase makes me want to vomit in my mouth).
Of all the things that I could have imposter syndrome about… my PMDD really shouldn’t be one of them.
The Facts
In our consultation, Dr Khan explains the following:
- I am currently the correct weight if I were to have the surgery. (Thank you, new ADHD meds !)* Fig.1*
- I am a good candidate for the full hysterectomy via keyhole surgery. So, less scarring and recovery time.
- I would still need to find the right HRT and dosage for me, as I would still need HRT for the foreseeable future.
- I can not have Egg Freezing via the NHS as (direct quote from the Fertility team) “NHS Egg Freezing is mostly only available to women who have Cancer and other life-threatening conditions.”
Dr Khan reads my raised eyebrows.
- A full hysterectomy remains the best option for a patient like me, who remains acutely sensitive to hormone changes and fluctuations.
Leaning towards yes
Nan & Ancestral Wisdom
Forgive me, but I cannot help bringing to mind my Nan, Pat (my best friend and superwoman) when I consider my options with this. I say, “bringing to mind”, Nan is never far from my mind and was the type of soul who would have a strong opinion (especially if it concerned your immediate wellbeing) whether it was sought or not. I have become more spiritual in the last few years, and whilst I know it’s “not for everyone”, my connection with my Nan and the power of the love and understanding we had for each other is something that I often tune into for perspective, strength and wisdom.
My Nan was my only constant as my spent my teenage years in Foster care, (I will touch on this below).
Having spent my pre-pubescent years as a certified boffin, the English Award winning quiet girl whose biological Mother used to teach many of her classmates in Primary school, I was completely unprepared for my world to be turned upside down.
After considerable family trauma, finding myself in Foster care, hanging around with the wrong people, safeguarding issues galore etc I felt for years into adulthood that I had lost so much of my life to survival mode, to trauma, to rebuilding.
I had lost my ability to know who I was, to find joy in academics, to believe that I deserved a better standard of life and love.
Nan saw me. She believed in my ability to grow and heal generational trauma that threatened me, my sister, any children we may have, any children they may have and so on.
Though Nan would often talk about the joy of having children and be very vocal about her excitement for great – grandchildren (her whole body sang with delight when she met my nephew and niece as babies), Nan was also a very progressive, logical and matter of fact.
I often called my Nan the Lioness; so protective of her cubs, whether they be her biological cubs or not.
When I think of her with regards to the question of the hysterectomy, well… there is no question. There is empathy, there is warmth and space to grieve. But there is hope. And no question that:
- My health and wellbeing are my first priority.
- I know my mind and body better than anyone else.
- Any future, hypothetical relationship that could be threatened by my not being able to have my own biological children, is not a relationship that I should seek. It is not for me.
- My potential to be a mother is not determined by my internal organs, but by my capacity to love.
Foster care
I have always known that I wanted to foster or adopt at some point. Having had lived experience of the “care” system in the UK, I know very well how desperate the situation is, how many children need a home, stability, love. I know how having those things can mean the difference between one kind of life or another.
I know all of this.
And though my heart tells me that this is what it wants… there’s the annoying bullshit part of me that just interjects with:
“Yes, but you would look so cute in dungarees with a baby bump.”
Moving forward
I am hoping to spread awareness by sharing my journey with PMDD, a full hysterectomy and hormone therapy. I hope some comfort can be found for others in a similar situation.
Until next time…
Kim
xXx
