Chapter 4 - USA, Menopause and Fight or Flight
At the beginning of April, we jetted off to the US, specifically to Baltimore, to visit family (albeit briefly), then to Washington and New York. I felt good. Really good. My IBD was behaving itself for once.
Travelling with food intolerances, however, is a pain in the arse. Quite literally.
Sugar is in everything. So is milk – and if there isn’t actual milk, there’s milk powder lurking somewhere. Remember from last chapter, I also couldn’t eat anything from the Nightshade family (potatoes, tomatoes, peppers, aubergines), including things like paprika and chilli. Eating out became an exercise in frustration.
The New York food saga
I remember one night in New York vividly. We were heading back to our Airbnb late, both starving. We found a food shop with a hot food section – jackpot! Except there were no allergen lists, no ingredients displayed anywhere. We asked the guy working there. He didn’t know. It was about 1 am, and there was nobody around who could tell us.
I got so frustrated. It wasn’t the first time this had happened, and it wouldn’t be the last. Food had become my nemesis.
Finding restaurants I could actually eat at stressed me out. When people wanted to cook for me, I felt awkward, like I was being difficult. I’d get flustered and anxious. I had wonderful people trying to include us in lunches and dinners, and all I could think was that I was being a burden, that they regretted inviting me.
They didn’t, because I have some truly wonderful people in my life. But my diet had gone through so many iterations due to IBD and fertility that it wore me down. These little earworms would whisper that I was being difficult. They were entirely of my own creation.
Anyway, back to New York.
That night, we ended up eating canned tuna and microwave rice. Glamorous, right?
One day, we met up with Marco’s friends who lived in New York, and they took us to this diner that actually had vegan buns and sweet potato fries. I could order straight off the menu without worry. It was glorious.
We did more than obsess about food in New York – we also visited all the usual tourist spots.
Coming home to reality
When we returned, we threw ourselves into preparing for our first two Chatty Sicilian events on 12th and 14th June. We were buying supplies (I still have a fryer tucked away in the loft), developing menus, and running advertising. It was getting exciting. We’d even been contacted to run a private event for a Meetup group. There was talk of developing apps.
Things were coming together.
Then my body decided otherwise.
I should have had my next cycle when we returned from the US. It never came. My IBD symptoms flared back up with the odd belly cramp. A few times, I thought maybe I could be pregnant, maybe that’s why my cycle had stopped (I had other pregnancy indicators too).
I went to my doctor to find out what was happening.
“Menopause,” he said, simple as that.
When I mentioned the possibility of pregnancy, he asked if my boobs hurt. No? Well then, I wasn’t pregnant. Case closed, apparently.
The menopause assumption
I protested. I wasn’t having hot flashes, night sweats, insomnia, brain fog, or any of the other classic symptoms – apart from my missing cycle. I questioned whether my IBD could have caused it. I was ill, after all – surely my body could be in fight-or-flight mode?
Nope. I was over 40, so obviously it was menopause.
Funny how they don’t apply the same logic to pregnancy, isn’t it? If I’d been trying to conceive, they’d have run every test under the sun before making assumptions. But for menopause? Age alone was apparently enough evidence.
They did blood tests. My follicle-stimulating hormone (FSH) was 70, which is high. Another point for menopause, they said. But they weren’t checking my oestrogen levels.
Here’s what they should have known: women start their cycle with rapidly increasing oestrogen while two other hormones – luteinizing hormone (LH) and follicle-stimulating hormone (FSH) – rumble along underneath. FSH spikes just before ovulation to tell the ovaries to release an egg. The higher the spike, the harder your brain is trying to stimulate the ovary.
High FSH is ONE indicator that you could be heading toward or in menopause. It shouldn’t be taken in isolation. If your oestrogen level is high, you’re not in menopause. But they weren’t looking at that.
I know now that progesterone – the hormone that dominates after ovulation – irritates my bowel and causes inflammation. I’ll tell you how I discovered that particular joy later in this story.
The medical cascade begins
I waited a couple of weeks, hoping everything would pass before contacting the IBD team. They scheduled a flexi sigmoidoscopy for two weeks later (15th May) to investigate.
By the time my appointment rolled around, my symptoms had vanished. My bowel movements were normal – better than they’d been in ages. I nearly didn’t go to the sigmoidoscopy, but I thought, “What can it hurt? Best to check.”
I should have stayed home. I should have left it well alone.
The enema they gave me to take that morning in preparation irritated my bowel immediately. I didn’t have my normal bowel movement. The nurse performing the sigmoidoscopy commented on it but said it didn’t affect the procedure; everything was “nice and firm” with no signs of inflammation. They took samples anyway. I’d get the results in 7-8 weeks.
In the following two weeks, my symptoms got worse.
I went back to my doctor because I still hadn’t had my cycle. Same response: menopause. I protested again – could it be because I was ill? I got a shrug.
When everything falls apart
I contacted the IBD team, who had the results back early. Although my bowels looked fine to the naked eye, I had mild inflammation. I explained that I thought I’d reacted to the preparation enema because as soon as I took it, problems started.
I was dismissed. The nurse prescribed me mesalazine enemas to take for 28 days.
As soon as I started taking them, it was like I’d been pushed off a cliff.
Nothing stayed inside me for more than 15 minutes. I was losing a lot of blood. Stomach cramps that were crippling. It felt like I was on fire inside. I researched cooling foods to try and calm things down. It took me about an hour and a half to eat a small bowl of breakfast. I didn’t know what I could eat without upsetting my bowels. My appetite vanished completely. An itchy rash spread across the backs of my hands and elbows.
Luckily, I was freelancing at the time and didn’t have many clients. At least I didn’t have work stress on top of everything else.
After about five days, I called the IBD nurse. It was unusual, she said, but I should persevere. I did for a couple more days, then stopped. I couldn’t take it anymore. It was clear to me I’d reacted to it, so I called the IBD team again.
This was a Saturday. They didn’t get back to me until Wednesday, after I chased them.
What followed was them prescribing two types of medication without clear instructions. I had to travel to a pharmacy 20 minutes’ drive away to collect it, which, in my condition, was like running the gauntlet with no toilets en route.
The medication they prescribed contained lactose. I had to contact them again.
They didn’t get back to me until Friday.
I took one of the medications (oral mesalazine) on Friday afternoon and immediately started vomiting on top of everything else.
Our Chatty Sicilian events got cancelled. We’ve never been in a position to revive them since.
Breaking point
Sunday, 16th June, my housemate took me to A&E.
The triage doctor looked at me with barely concealed exasperation. “What do you want us to do, Miss Tate?”
What did I want them to do? I wanted them to help me. I wanted someone to listen. I wanted someone to acknowledge that something was seriously wrong.
But that’s a story for the next chapter.