Hello,
Posting here again for the second time in a year because life is just disgustingly cruel.
I lost my son at 19 weeks in September last year. At 15 weeks, I started needing to pee 15-20+ times a day. At 16 weeks, I started having painful contractions when peeing, but I had no idea that’s what was happening. I also started having tightenings randomly, but thought it was baby moving. I reported this to community, triage and GP. All dismissed it as nothing. I was tested for UTI and given antibiotics after pushing for help even though all tests and swabs were clear. I had a very different stomach pain at 19 weeks and they told me membranes were visible and I’d give birth within 24 hours. 19 hours of agonising labour later, our baby boy was born. He was alive throughout, I could feel him moving until I had to start pushing. He was healthy and perfect. Absolutely nothing was found in any of the tests. My blood, urine, swabs, placenta and cord were all fine. They found a blood clot on the maternal side and inflammation in the placenta, but no infection and no autoimmune causes. So they won’t take it into consideration.
They told us it was just bad luck (I’ve also had a chemical and a MMC at 9 weeks) and to try again. They said we’d be given the kitchen sink treatment - cervical length scans, progesterone, aspirin and a stitch if we wanted one. When we fell pregnant this time they refused anything except progesterone and cervical scans because there was ‘no proof a stitch or anything else would help’. We sought help from the preterm birth team at Guys and St Thomas with Tommy’s specialist Dr Andrew Shennan, who said it wasn’t bad luck and my cervix needed monitoring.
I felt my first contraction this time at 12 weeks. It was painless but unmistakable. My hospital said there was no advice, it doesn’t happen this early and to just drink water. I was already drinking 2-3l of water a day. My cervix was measured from 12 weeks by Dr Shennan’s team. At 16 weeks, I went into my home hospital on a Saturday night with cramping, pressure in my bladder, back ache and tightenings. They told me to go home and wait to go into full labour.
I made it to the St Thomas appointment the next day and they said my cervix was 28-30mm, curved and closed. By this point, we’d declined any further scans from our home hospital as their measurements were clearly inaccurate and alarming - 11mm, then 22mm, then 25mm, then 19mm and open. They never once escalated my case to the consultant - we did this ourselves and she said go home and wait to go into labour. At St Thomas, they measured it 30mm or thereabouts at all appointments. They were worried about an infection that wasn’t being picked up by tests due to my symptoms, so gave second line antibiotics. The pressure in my bladder and back pain disappeared, the cramping had stopped by the Sunday before, but the tightenings have continued.
Since then, I’ve had tightenings 10-15 times per day ever since. They don’t ramp up, they’re random, though they stop at night time and start up again around 08:30. At my last appointment, St Thomas confirmed that my cervix had shortened to 21mm and that it was my uterus causing the cervical change, not cervical change causing the contractions. They have offered a cerclage anyway, but only if the contractions stop. No one will give me anything to make them stop, so it’s a dead end. In my last pregnancy, they didn’t even ramp up. Labour started suddenly, though we now know the tightening had been causing cervical changes for weeks, undetected because no one ever scanned or examined me.
I'm struggling to find anyone anywhere in the entire world who has experienced this. My baby is moving around very happily right now, and there is nothing I can do to save it. I’ve explored every option; there aren’t even any private obstetricians anywhere near us who could help by providing something off label. Everything is geared toward preventing early miscarriage or cervical problems.
There is clearly something very wrong that my body gets to the second trimester and starts slowly trying to eject perfectly healthy babies. I’m spending every waking moment trying to find someone else this has happened to, or someone who knows what it could be. It’s clear neither of the usual causes are the problem, so the NHS has washed its hands of us and told us to just go wait for our baby to die again. Even looking at private clinics, they seem to focus on questionable immunological practices, but usually only for conception/early pregnancy. There doesn’t seem to be a single person in the world who knows what is happening to me and my babies.
Please, PLEASE, has anyone ever heard of, or seen, or experienced anything like this? Anything at all even remotely similar? I can’t accept that I will never get to bring my babies home.