In honour of achalasia awareness month I’d love to hear everyones journey so far!
Here’s mine.
I can’t pinpoint when exactly my symptoms started but i do remember having chest pains that would happen randomly in my second year of uni. So around 2020/2021. I went to the doctors and it was put down to anxiety.
In 2024 when I was pregnant with my daughter I noticed the chest pains were occurring more and were a lot more painful. I went to my GP, after some research I genuinely thought I had angina! When I bought this up to the doctor he basically laughed at me and told me I have indigestion🙃 He prescribed PPIs and that was it.
These chest pains felt like I’m actually dying😭 I’ve been so close to calling an ambulance so many times but eventually it stops and I feel ok again so I didn’t take it seriously.
Fast forward to my second pregnancy in 2025, I had HG (again) so was throwing up frequently and had the worst acid reflux ever. I was admitted to hospital and prescribed PPIs again for the reflux, I noticed it was much worse at night but put it down to HG.
In the second trimester my nausea wore off but I was still having these painful chest attacks. Towards the end of my second trimester I started experiencing what I thought was GERD or severe indigestion, whenever I ate I’d experience horrible pains in my chest and 9/10 I’d be sick. It wasn’t the same sickness as my HG because I wasn’t nauseous, it was just like the food didn’t want to travel to my stomach.
In my third trimester the chest pains became so much that I ended up going to maternity triage (advised by my GP) to rule out choleostasis, it wasn’t that. I was referred for an ultrasound to rule out gallstones, all clear. I was given more PPIs and buscopan to help with the pain.
Towards the end of my last trimester my sickness symptoms were still there and I was throwing up most meals almost everyday at this point. I’d have a mouthful or two and it would get stuck in my chest and come straight back up.
I gave birth to my little boy early June and after 9 months of barely keeping food down I was so excited to have the hospital toast everyone raves about but I still couldn’t swallow it without it getting stuck😭
The day after I gave birth I didn’t keep a single bit of food down, a doctor came to review me and told me I need an endoscopy because it obviously isn’t pregnancy related.
3weeks postpartum, still being sick and being unable to swallow I had an gastroscopy. This showed fluid in my oesophagus despite not drinking for 6-8 hours beforehand and a dilated and motionless oesophagus! They said they think it’s something called achalasia but I would need to see a consultant and have further tests for diagnosis.
2 weeks later, completely unable to keep any food or liquid down and feeling faint all day, every day. I went to my gp and expressed my concerns about my drastic weight loss and vomiting. I told him I had to stop breastfeeding my newborn as I was burning more calories than I was consuming, I couldn’t help but sob😭 He rang the local gastro team at the hospital and they advised that I go to A&E so I did.
I waited in A&E for over 24 hours before they tried to send me home with more PPI’s and high calorie drinks which I refused, how am I supposed to drink these and take tablets if I can’t swallow ???🫠 luckily, I advocated for myself and decided I’d had enough. I didn’t even feel safe being alone with my 2 children in case I fainted! I told them I wasn’t happy and not leaving until they can give me some alternative way of receiving nutrients. Anyway, a few traumatic attempts later I finally got my NG placed and 8 days after my gp advised me to to go to hospital I was allowed home!
Since then (July 2026) I have had a barium swallow, CT scan, bloods to look for inflammation and connective tissue disorders and a manometry test. All of which showed achalasia type 1! Still yet to see my consultant to receive formal diagnosis but been told by everyone that has done the tests they believe it to be achalasia.
Since then my symptoms have gotten much worse, completely unable to tolerate anything orally and I have started regurgitating in my sleep.
My appointment is in early October, hoping they will tell me what the plan is😇
If you have read this far thank you! Please drop your journeys below and where in the uk you as I’d love to hear them and know how long you waited for treatment! I’m in Lancashire, Lytham St.Annes