This week I should be having a 20 week scan. I’ve really tried to make a conscious effort not to think too much about dates, weeks, what if’s. But I’d be lying if I said I haven’t thought about it this week.
PCOS - (Polycystic ovary syndrome)
I always knew or felt that becoming a mum was going to be a struggle for me. I remember when I was younger and people used to ask what your phobia was, I’d never think of spiders or heights but always not being able to have children, of course I’d answer snakes or something pretty generic, maybe years of unconscious anxiety about something I hadn’t even started yet has lead me down this path but infertility was and still is my biggest fear.
I’m not sure when the creeping fear begun, maybe when I was at school and girls used to talk about starting their periods and I, by 15, still hadn’t or knowing that my beloved auntie had never had children, I was always conscious of that.
Between the ages of 13 – 16 I was constantly back and forth from the doctors worrying about my missing periods, my terrible acne, ridiculously dry scalp, tummy pains the list goes on and yet no doctor ever suggested PCOS or some kind of hormone imbalance. I was always told I needed to put on weight, I was a keen dancer, tall and slim (my grandad calls me sticks) and that it was nothing to worry about. At 16 the doctor suggested the Pill would sort out my acne and start / regulate my periods. I was thrilled.
In 2017 Jack proposed and I come off the pill, naively I thought I’d give my body a year pill free so that once married we could start trying. When my periods didn’t return after 5 months I went to the doctors who blamed it on stress. I suggested maybe it was PCOS (Dr Google had suggested so) and was told “It 100% is not PCOS, you are not the shape for it”. I’m lucky enough to have private medical insurance through work, so fuming, I rang them and asked for an ultrasound. The sonographer said “My god, they are polycystic aren’t they” and that was how our infertility journey started.
The ultrasound and consequent blood test confirmed PCOS. I googled and researched everything I could and looking back became obsessed with trying to fix it, so much so that after cutting out gluten, dairy, most carbs and only eating organic I was now skinnier than I had been before, so when my referral appointment with the gynaecologist finally arrived (NHS 16 week waiting list) I was back to 15 year old me being told I was probably too slim and too stressed to be ovulating. I was prescribed the wonder drug CLOMID.
Clomid cycles are tough. You are, like any fertility treatment, absolutely desperate for it to work, stressed, tired, anxious and extremely hormonal but I found the hardest thing about Clomid is you feel completely isolated. You are given this pill, only a small tablet (how bad can it be?) told most people achieve pregnancy within 6 cycles, you’re young, fit, it will work and then, depending on your dosage, take 1-3 tablets for 5 days, you need to have sex every other day from day 7-24, no follow up appointment is booked, no further discussion, just sent on your way. Sounds easy... Its not.
Unlike being with a fertility clinic you do not have the opportunity to contact someone if you are concerned or worried or have any questions while in the cycle, most GPs do not really understand, trying to talk about it with anyone is hard, because as soon as you say fertility treatment people naturally jump to IVF and it feels dismissed that it’s not IVF. I didn’t imagine TTC to be me screaming at Jack that we had to have sex NOW, while holding back the tears because my ovaries were so swollen it hurt. We spread our cycles out because the thought of it not working, almost made me not want to take it, I felt like my options were running out after each round, and to be honest we needed the breaks- I was a monster. After one outburst Jack text me saying “Marriage is everything I was told it was- bloody awful!” We can laugh about it now but the pressure I was putting on us last year was mad.
After the 4th failed cycle I asked for a HSG, AMH and a semen analysis (by this point I’ve obviously done more research, now I find it frustrating that they did not do this sooner!)
Thankfully both semen and AMH came back fine the HSG revealed my tubes were not blocked but were described as “sticky” they flushed them through a few times and said they should be fine.
After my 5th round of Clomid I had two negative tests and a period, this time we were frustrated and wanted to just get all the rounds over and done with so we could move onto IVF and went straight into our 6th round. Around day 15 of the cycle I started bleeding and was in a lot of pain. I knew something was wrong and went to the doctors, she seemed to have a professional Dr Google system and decided it must be OHSS (Ovarian hyperstimulation syndrome) from the Clomid, which is rare but not unheard of and I should go home and rest. Later that evening the pain was so severe we rang 111 who advised we should go over to A&E.
I explained this was our 6th Clomid cycle and they scanned me, I actually asked if my ovary was exploding, I know that sounds mad but the pain was immense and I was so bloated, I honestly thought it was. The doctor laughed and said he had never seen an ovary explode before but asked if I was pregnant, naturally I rolled my eyes, they couldn’t see anything on the screen and two week previous I’d had 2 negative tests and then a period so had taken our next round of Clomid. They decided to do a blood test to rule it out.
I was pregnant. I just felt numb, I think I said then, its ectopic but we were told it was too early to tell and to come back in a couple of days for another blood test. After the shock, I tried to think positive, I’d seen online someone say “Today I am pregnant” so that’s what I tried to think. I’d heard how dangerous ectopic pregnancies are so the hospital letting me go home was some odd comfort. I had my girls round over the weekend, who have been incredible and with me every step of the way and said “Right now I am pregnant”. We cried and laughed and had a cuddle trying to distract myself from what was going on inside, I was bleeding but the nurse had said lots of women bleed in early pregnancy and lots have pains, so maybe everything was ok? Realistically though, I knew it wasn’t going to end in a baby but that little glimmer of hope had me talking to whatever was inside and willing it on to survive.
The second blood test showed that my HCG levels had risen but not doubled, again the hospital decided to wait another two days for another blood test, this gave me more hope. The next day I collapsed at a friend’s house, she took me over to the hospital. The consultant said she was pleased I’d come in they were just about to call me(!) They scanned me and confirmed it was ectopic. (This means an embryo has implanted outside of the uterus – most commonly in the fallopian tube) My tube had ruptured there was internal bleeding. I’d be having surgery within the hour.
I’ve always felt so awful for anyone who had been to the Early Pregnancy Unit, seeing other expectant excited mums but nothing had prepared me to be shut in a little room with no windows just a shit butterfly photo on the wall and a leaflet about miscarriage on the table. Honestly it was box room with a pleather avocado sofa. Nothing about that room was comforting. I just put my head on my mums lap and sobbed while we waited,
Jack was working a couple of hours away and left as soon as I rang him but luckily mum works close to the hospital. It’s a bit of a blur going to theatre but it was petrifying, they have to run through every possible outcome with you and ask you to sign a consent form. I just didn’t want to. I just remember begging them to leave my ovaries and uterus and saying I’d rather die than it all be taken. In the end I signed the tiniest D. It’s not really a consent form when you’re forced to do it.
An ectopic is strange, all of infertility is strange I suppose. But unless you are in the TTC world or have experienced an ectopic, not many people know what it is. People might not say the right thing after a miscarriage but they know what a miscarriage is, we had all the usual horrendous comments “At least you know you can get pregnant!” & “Everything happens for a reason” but we also had, “Oh right what’s that then?”, “That’s mad that can happen”, “But you still have the other tube”. We’ve been pretty open with our friends and family but even some of them you want to shake when they say the most ridiculous thing.
Maybe it’s the wording, ectopic pregnancy doesn’t sound like a loss so it felt like some people didn’t register it as one, some were so pleased we’d managed to finally get pregnant it was almost congratulated.
Anyone going through infertility or loss knows that it has a huge impact on your mental health, but I think the hardest thing about infertility is your world could be completely crumbing and unless you have been there, its totally unrelatable.
After the surgery we moved back to my parents for a couple of weeks and I really allowed myself to grieve, not just the pregnancy and the tube but the whole infertility journey. I needed time away from the “real world” and to just focus on me.
Then lockdown happened so I‘ve had a little more time than I bargained for! I have actually had two natural cycles since the lockdown, (previously without the Clomid it had been 3 years!). Maybe some of them annoying old wives tales “Once you’ve been pregnant, your body it kick starts itself” are true? Or more likely the 9-5 rushing around all the time, and every day stresses just didn’t suit me! I feel like a weight has been lifted from my shoulders, I’ve been in a little protective bubble where I can focus on myself and what my body needs and to be honest, I’ve been loving it.
WHERE WE ARE NOW
A couple of weeks ago we finally had our follow up appointment, because of the ectopic, unbelievably we are now no longer eligible for NHS IVF. We “Achieved Pregnancy” through Clomid so are no longer considered infertile. We are devastated and angry. My laparoscopy to remove the tube and pregnancy showed that I also have a small amount endometriosis, so I now have diagnosed, PCOS, Endometriosis and one tube but still not seen as infertile (enough!)! My protective bubble definitely burst. And then we had Jacks birthday to remind us that time isn’t standing still. Isn’t it weird how birthdays can affect us now?
We had always been told for health reasons you should only have 6 rounds of Clomid- the consultant has prescribed us with another two. We are both reluctant to take them, the consultants opinion is, if we want to get pregnant we’ll take it. But do we want to risk the other tube? Why now is it ok to take 8? How devastated are we going to be if it doesn’t work? She was pretty emotionless about the situation and said she sees no reason why the Clomid wouldn’t work again but her idea of the Clomid working and ours obviously differ.
While we’re deciding what to do my GP has put in an appeal, she thankfully agrees with us that’s it feels impossibly unfair to refuse us funding and achieving pregnancy is not bringing home a baby. So again more hoping and more waiting!
There’s so much experience and knowledge and truly inspiring woman and men within the TTC community that even when your world is crumbling there will be someone or something there for you. I was 6 weeks pregnant and only knew about it for 5 days but no one in this community made me feel like it didn’t matter. It was acknowledge and grieved and supported and that’s what I needed.
The Rainbow running club is obviously where I met the incredible Lucy and I’m so grateful to have such an amazing support network through podcasts, online, events and friends. If you are struggling, no matter where you are in your journey please know you are not alone and if you want it, help will always be there.
You can follow Dani on instagram @ttc_dani