Hello my lovely loves,
It seems each time I write it’s always with a mention at the beginning of a post, talking about how long it’s been.
At first the reason I didn’t post as much was good. Over the last few years my levels had been improving so I was able to do slightly more.
It was getting to the point where I could start trying to push a little further in my life, or write about it, but not both.
So I figured I would focus on doing more and wait for the day when I could do both comfortably to really start to get into blogging again, occasionally checking in and talking about things as and when they occurred to me, but not with the frequency I’d tried to have in the past.
Those of you who have checked out my illustration accounts may have noticed an uptick on that content appear, even as the Super Pooped posts decreased.
Unfortunately, while this was happening, I started to notice an increase in other, odder symptoms.
I had noticed my menstrual cycle had shifted slightly several years ago, but as I’d attempted (and failed, with much vomiting) to try and control my difficult periods with a contraceptive pill, I assumed that it was left over from that.
I started noticing melasma (darker skin patches, commonly associated with pregnancy) on my face, and, again, assumed it was because of the shot of hormones I’d had during my brief tussle with The Pill That Did Not Agree With Me.
However, my menstrual cycle got more and more erratic and by the beginning of 2022 I was starting to get concerned. I was also starting to notice an increase in brain fog and hot flushes. These are things I get from ME/CFS anyway but, given how much better I was feeling in other ways, it was odd.
And then… my nails were starting to flake and break really, really easily, and my skin texture seemed… different. My skin’s never been great but even my healing rate seemed slower.
Those in the know may realise that these are all common symptoms in peri-menopause. I think a well-meaning someone even suggested it online.
Given that I was slowly realising this had all started around the age of 32 I was extremely resistant to this idea, particularly as I’d always wanted children.
I was frightened, but after I didn’t have a period for three months at the start of 2023 I knew I had to go to the doctor. We did tests, and, sure enough, it appeared I was entering peri-menopause.
I can’t describe to you the sick, swooping feeling after those results. The doctor explained that I likely had Premature Ovarian Insufficiency (POI) and immediately asked about whether I wanted children, because we would need to discuss potential fertility options.
Look, I’m ill. So ill I’m housebound - I’ve known for a long time that not being able to have children was a distinct possibility. But there’s something very different about knowing it’s unlikely, and knowing that your fertility may be going far, far sooner than you expected.
I’ve talked about choice a lot on this blog. Being able to choose something MATTERS.
Choosing not to have children because you feel your circumstances mean you can’t be the parent you want to be is tough. Really frikin tough. There’s a chance circumstances may change, but it’s small enough that you have to learn to live with it.
But having the choice potentially taken away from you altogether?
Ouch. Just… ouch.
My Mum, knowing how much I’d always wanted children, was immediately on board with the idea of egg harvesting, but I still had that sick, sinking feeling.
I know plenty of ME/CFS sufferers who have kids; a fair amount of whom decide to have kids after they get sick, but I knew my situation was not the same.
It not impossible for those in peri-menopause or with POI to conceive, although it is lessened, but I’m single, and single parenting is NOT for the faint of heart. I’d considered it as a potential option before I got sick, in case I didn’t find anyone I wanted to raise a child with, but now?
I’m housebound, and I require daily care to help keep MYSELF fed, clean, and safe.
I’m an only child, so if even if I managed to get to the point when there was a living, breathing person I was responsible for, if I got worse and was unable to take care of them, their care options would be limited.
My parents would climb over broken glass for me, but they are older and have their own health problems. I see how tired they get just looking after me and I’m not willing to put that on them.
As things stood? And currently stand? I am incapable.
And I love my non-existent child too much to put them at that level of risk.
There is also the side effects of egg-harvesting.
Did you know that you have to go through the same hormone injections as regular IVF to get your eggs harvested? They can be absolute hell on a healthy body, and on mine?
There was every chance that attempting to have it done would just push my health further back from being able to look after another human.
And that’s on top of the hormones I have to take for my own health, in order to lessen the chances of things like Osteoporosis, which, as someone who’s housebound, I already have a higher risk of.
Currently, in circumstances of premature peri-menopause the NHS doesn’t offer egg-harvesting. It would need to be done privately, so I would have to pay not only for the injections, and the procedure, but also the storage of the eggs for an unspecified amount of time, which presumably would be years.
By the way, I’ve never gone into specifics of how much it costs to be disabled but it’s A Lot.
In the end, egg harvesting mostly felt like an extremely risky and expensive way of avoiding my feelings, so I did what I do best. Took a deep breath and faced the fucker head on.
And it was really fucking hard. Thanks to the whole universe for my amazing parents, my awesome friends and my incredible therapists, because my god, that was gruelling. I was basically a snot monster for several months.
I’m not going to pretend that it doesn’t still hurt sometimes, that I wouldn’t change things if I had the option, but over time I slowly came to accept that just because it was increasingly unlikely I’m going to find happiness in this specific way, doesn’t mean I can’t find happiness in other, just as fulfilling ways.
It allowed me to look at parenting with a more balanced eye in the end, too. As a society we very much tout motherhood as the ultimate calling, and a pure and magical state of being, but it’s gritty and emotional and difficult.
I have several friends who have told me absolute horror stories of childbirth and parenthood, and just how hard it is. And that’s something I needed to hear. Because an honest reality is much easier to give up than a perfect dream.
If my health improves to the point I can date again, maybe I’ll meet someone with children already, or I could adopt or foster.
Or maybe I’ll be the batty, overly dramatic aunt who wanders around in couture while the locals discuss the chances of her being a witch. (High.)
Having a child does not guarantee a happy life, just as being childless doesn’t guarantee misery.
I can be happy. I’m good at that.
Now… this is normally the point in the post where, after putting you lot through the ringer and ending on a more positive note, I would sign off, but lucky, lucky you… the story isn’t over yet.
Now, I mentioned that I need to be on hormones for the foreseeable, which necessitated a trip to the Gynaecologist and her team (who were lovely, and after seeing how much it had taken out of me to actually get to the hospital will now do appointments online as much as possible).
I researched POI and peri-menopause after the blood test with my GP. I obviously have a basic knowledge of menstrual cycles and their accompanying hormones but this was a whole new level. And you don’t know what you don’t know.
I fully recommend The Complete Guide to POI and Early Menopause by Dr Hannah Short and Dr Mandy Leonhardt for anyone who is interested in this topic.
When they say complete, they are not kidding; how it works, symptoms, other potential causes, tests, treatments, their side effects and risks, dealing with grief, patient anecdotes, EVERYTHING.
It made me realise just how prevalent it is, and that for many people it happens at a far younger age than it did for me.
As someone who still has their uterus, I need to have both Oestrogen and Progesterone, so I started a cycle of HRT patches about a year ago. And let me tell you, when I started sticking those to my arse, I felt like the world’s shittest My Little Pony.
I’ve kind of got used to them now, but I still think I’d feel a lot better about the whole thing if they were little stars or hearts or something.
There were some strange side effects those first months; dizziness, jaw pain, heavy periods, sluggishness, but by far the worst was the brain fog. I’m fairly used to brain fog, but this had a different flavour somehow.
I could feel there was energy underneath the fog and apathy, but I just couldn’t get to it.
All HRT therapies have some level of settling time, but this wasn’t shifting, so after a few months I did a bit more research and looked at my old hormone tests again and wondered if I needed more testosterone. I’ve always had a high testosterone level, and my current level, while in normal range, is less than a third of that in a test from before I got sick.
Early this year the Nurse Practitioner at my surgery (who has a special interest in POI) suggested we try extra Oestrogen as a first option, as she’s not able to prescribe testosterone and it can commonly help younger patients with the same brain fog issues as me, so I figured I’d try it.
Big. Mistake.
Within one week I was bedbound and my energy levels had dropped to what they were about 4 years previously. I had previously had a drop for about two weeks during the combo patch settling in period, so I decided to tough it out and wait.
I spent a whole month waiting for the exhaustion to decrease. It’s very, very scary for an ME/CFS sufferer to have an extended energy drop. It reminds you of the most difficult periods of your life, and even if I knew the reason for it, hanging on during that month was incredibly difficult.
After speaking to my ME/CFS Nurse she suggested cutting the extra patch in half and seeing what affect that might have.
My energy levels immediately went to what they were about 2-3 years ago, but after two more weeks with no further improvements I just couldn’t take it any more.
It was clear the extra Oestrogen was causing more problems than fixes, so I spoke to the Nurse Practitioner again and she confirmed I should stop the extra patch.
That was early May and I spent the next four months recovering. My memory is always badly compromised when I crash so honestly, most of this year is just a blur.
It’s only in the last month I’ve started to feel like myself again.
I would mention, if you’re going through POI or similar, then I’m not saying to avoid HRT. It’s important to protect your body’s future health and make sure you’re getting everything you need to function. What I am saying is take it slow, especially if you’re also an ME/CFS sufferer.
The jump between the combo patch Oestrogen levels and the extra one was an added 50%. I now know that’s waaaaay too much.
Slow and steady.
I’m still waiting to get the gynae appointment to try upping my testosterone (you have to wait for things to level out before adding a new thing into the mix anyway) but I will ask to try the smallest smidgen to start.
So the last two years have been… A Lot. One year of emotional upheaval, and one of physical. I’m still trying to get a proper handle on things, but now I’m finally able to start processing that time. And I guess that leads me here, to you.
Hello.
H
