'M.E. myself and I' by Anna Redshaw

Content note: childlessness, pregnancy, weight gain, diet, menstruation, surgery

Before I had my surgery, I struggled to find anyone (who had the same diagnoses as I did) who categorically said they were glad they’d done it. So before you read on, let me just say that this has been one of the best decisions I ever made. It hasn’t been ‘out of the frying pan, and into the fire’ as I had feared, but it can probably be summed up as being the (far) lesser of two evils.

Surgical menopause is hard but it’s SO much better than Adenomyosis, my awful periods, and PMDD.

Adenomyosis & PMDD out. Surgical menopause in.

It’s absolutely marvellous to be rid of Adenomyosis. Periods always felt hard emotionally; they felt pointless as someone whose womb would never be needed to grow a baby.  Of course the hormones produced in the ovaries are needed for other bodily goings on, so it wasn’t/isn’t as simple or straightforward as just opting to no longer menstruate.

This is still hard, even for someone whose threshold for hard is pretty high.

There’s an element of overwhelm with surgical menopause, but I do have frequent moments of wonder over the fact the PMDD is gone. I don’t have to keep three weeks of the month completely free, ready to endure my menstrual cycle.

But a body in surgical menopause does not have the natural changes, taking someone from menstruation to post-menopause, that occur over several years. It happens the instant your ovaries are removed from your body.

I am now at a higher risk of bone density loss, osteoporosis, dementia, breast cancer… And I’d sum up menopause (for me) as weight gain and anxiety!

Physical effects

Physical recovery continues to go well. My scars are healing well. There is sometimes an ache that lasts a few seconds, in my pelvic area around where I assume my ovaries were. I’m keeping an eye on it. It’s still on my mind that it’s rare for someone with Adeno to not also have Endo.

There were no issues during or after my surgery. My bladder and bowel we’re not affected, although I do now pee more frequently and am careful to empty my bladder as soon as I can when I feel I need to, as post-hysterectomy you can be more inclined to get UTIs.

I’m still freaked out by the vaginal cuff business. I’m paranoid about a prolapse. But so far so good.

I’m still uncomfortable sitting in certain positions. My skin is drier. My hair is breaking. If you’ve been here long enough you’ll know I’m quite precious about my hair (I used to have to have it in a pixie cut). My teeth are sensitive, and my knuckle joints ache (particularly when I forget to take my calcium and vitamin D supplements).

After 16 weeks, I was able to lay on my front for very short periods, but I’m still needing a body pillow to sleep and I’m not back to sleeping on my front like I used to. Talking of sleep, surgical menopause has altered my sleep a lot. It now takes longer to fall asleep, and I wake up almost hourly every night.

Mental effects

The mental side of surgical menopause is not as severe as PMDD. There isn’t a feeling of hysteria or being completely unhinged. Just this week I cried with laughter without the fear that it’d switch to sobbing, and then back again, that I’d lived with for a decade.

But it’s still very, very unpleasant. It doesn’t stick to a cycle like PMDD did. The numbness just comes . My confidence has taken quite a hit. I’m just quite unsure of myself, and something akin to unsettled.

Anxiety has been an absolute beast at times. Evorel 75 (my HRT patch) was helping the sheer volume of it, but just this week it’s been upped again to Evorel 100 because my mental wellbeing isn’t where it should be.

I’m grateful for patience and pep talks, and others knowing what I need because I sure as hell can’t even think straight.

Emotional effects

Childlessness emotions have evaporated considerable. For the first time in years and years, I was able to congratulate someone else who has M.E. and who has become pregnant. This was frankly impossible before, because the emotional toll of facing that subject was too great.

The removal of my natural hormones has left me often feeling on the verge of tears, for no decipherable reason. I have cried at every counselling session I’ve had since surgery; a new occurrence for me. Yet, at the same time, I often feel unable to release emotions (good and bad) in the way I used to. This is something that I also experienced while in chemical/medical menopause last year when receiving Zoladex implants.

Impact on M.E. symptoms 

Surgery itself may not have obviously changed my baseline, but surgical menopause seems to have. I’m well versed in fatigue; I feel for anyone who isn’t who might be facing surgical menopause.

But I am sluggish. I can’t think straight and am getting so few moments where that isn’t the case. My baseline has dipped, and any Post Exertional Malaise wipes me out for longer.

Appearance

My body has changed in appearance. I’m struggling with this more than I’d like. The scales tell me I’m heavier despite my diet being the same, if not better. My clothes aren’t fitting. The little muscle tone I had left (after 14 years of being unable to exercise or walk further than around my house) is vanishing.

Diet & supplements

I’m taking calcium and vitamin D daily (it’s not daily, Reader, because I keep forgetting!). 

I’m trying to learn about leptin and insulin resistance, and how menopause generally affects a human body. But with my cognitive function further reduced, it’s easy to feel overwhelmed. Nutrition is a very tricky thing when you’re not well enough to cook for yourself anything close to regularly.

Hormone Replacement Therapy

I’ve already mentioned a bit about HRT in the Mental effects section, but I’d add that the placement of the patch seems to make a difference for me.

Just this week, I had a GP appointment to enquire about upping my dose again. A blood test found that my estradiol levels were below half what they should be for a woman my age. This could mean I’m not absorbing the patches well enough. We’ll check again in 3 months. I haven’t yet introduced any other hormones; my history of PMDD complicates things a little.

A note for those facing the same surgery (uterus, ovaries, fallopian tubes, and cervix removed)

Regarding this surgery, I found it impossible to know whether going through with it was the right thing for me; no-one else could decide. If someone else had written about it, their experiences didn’t necessarily give me a clear Yes or No answer as to whether to have the op, or whether the side-effects were worth it and/or were the lesser of two evils. It’s an almighty grey area of having to get all the info you can and weigh up the pros and cons.

And while I cannot decide for you, if you’re facing the same thing, I can share that l’d do it again in a heartbeat. Not everyone can say that about their own experience but I can.

Regardless of surgical menopause, it has been one of the best things l’ve ever done. It was so scary doing something that would result in so many unknowns. And counselling is helping me process that now I’m on the other side of it.

I would say though: You *will* need a hell of a lot of support and understanding in the acute recovery phase, and then in the months and years to follow as you discover who you are and how your body is in this next chapter. Not just physical help and physical support.