Its now been almost 3 years since my HG pregnancy ended and 2 years since I first shared my story. Over these years I realised there isn’t much out there on my other, rather all consuming conditions I suffered from - Ptyalism.
So here is this story.
My pregnancy started when I found out I was pregnant at 4 weeks in. I was tracking my cycle as a form of contraception and soon after I got that positive pregnancy test I started to dream big. I imagined all of the changes my body would go through and all the exciting experiences I will experience while growing this tiny person.
Like any newly expectant parents we started to quickly plan and organise our year and made a list of what we will need to do, buy and safe before this baby comes along. Such exciting times ahead, yet not an idea of what is due to come.
Week 6 comes around and I beginning to feel unwell - morning sickness, perfect. Right on cue and as predicted, most expectant mothers have this so I will too. Week 7 and this morning sickness is getting harder to manage and finding something to eat or drink is getting harder, this nausea is awful. Week 8 and I’m no longer eating and I’m vomiting all the time. I have moved into our bathroom because it’s cool, dark and close to the toilet where I can just vomit as I please. I start to numb my brain with anything to avoid thinking and feeling that nausea. I start to sleep in the bathroom, it’s just easier to stay still and not move and, at some point, my husband started to sleep next to me so I wasn’t alone. Sometime during my 8th week of pregnancy, it all changed for the worse. I had to trick myself into being ‘healthy’ enough to work, thinking I can do it. I try anything possible just to help subdue the vomiting and nausea but we try again hoping for a breakthrough.
After a horrendous experience at a GP on a public holiday and over a few weeks my regular GP handing out the all too familiar phrase the medical profession adores ‘The nausea should go away by week 12”. I leave misdiagnosis and unsupported each time. (You can read more about that in my HG story)
By week 11, I was at my weakest. It’s almost been 2 months of ceaseless nausea, vomiting, with minimal to no eating. On one evening I decided that I had endured enough, with unbearable pain and I had only urinated once that day - this isn’t ok. When we arrived at to the hospital I was so exhausted and emotional, I had to be wheeled into ED on a wheelchair, unable to hold my head up, I had a blindfold on like I’m in the Bird Box movie, I was crying hysterically and unable to voice what’s been going on.
I was feeling a sense of relief that I was finally going to be helped after not eating any kind of meal for weeks, throwing up far too many times to count. After visiting the GP multiple times for medication, sick forms, I.V fluids and the feeling of guilt only building. I am not coping with this ‘morning sickness’.
After 4 bags of fluids and prescription for ondansetron, an antacid and ginger I was sent home. Great, so I’m walking away from the hospital and I had no real diagnosis or treatment plan in any form.
The next day I woke up at home thinking I had completely lost my mind. I noticed the amount of saliva in my mouth and needed to make a conscious decision to swallow. ‘Do I normally swallow this often? Is there always this amount of saliva?” I am not losing my mind, how could I be so distracted and occupied with my spit all of a sudden. Prior to this morning, I seriously have never thought about the amount of saliva in my mouth and consciously needing to swallow, what feels like a bucket load of saliva.
I soon found swallowing was making me feel nauseous all over again, resulting in me spitting the saliva out, but that too was making me feel nauseous (I never was able to handle saliva even as a nurse) so I stuck a towel in my mouth. Little did I know that this would be my solution for 29 weeks.
While I was trying to not be nauseous and think about swallowing, my husband googled (just like he did with finding out I had HG) and found out that a tiny percentage of HG sufferers get blessed with hypersalivation!! Just wonderful!! So not only will I continue to struggle with dehydration because I can’t drink and keep any fluids in but now I’m literally drooling like a baby all the time. Can it get any worse?!
The magic week 12 is here - everything will stop, right?
After what felt like a never ending cycle of vomit, sleep, vomit, sleep I dragged my butt back to ED on a wonderful hot summers day, that I spent laying in front of a fan with the towel in my mouth, next to my trusty vomit bucket trying to sip/snack on anything possible but failing to keep anything in. By this point, I had lost more than 8kg, was so tired, dehydrated and completely over being sick.
This ED admission I got three bags of I.V fluid, two I.V injections, an explosive full body panic attack, and a doctor never heard of hypersalivation in pregnancy, but he didn’t seem concerned that a dehydrated expecting mother is also loosing fluids by drolling none stop. In spite of this, this doctor did finally diagnosed me with HG and consequently got me on the correct treatment plan. This doctor was a amazing and if I’m honest I only believe he treated me ‘correctly’ because he is a HG survivor too. His wife had HG in her pregnancy and he saw her suffer first hand! He did not unfortunately know anything about why I have excess saliva or about hypersalivation. I ended up educating him on it my google findings.
So at week 12, I got my pharmacy worth of medication to help get on top of my HG rather than play catch up but no more insight on my drooling or whether I should be concerned about it. Nor whether it will ever go away during pregnancy or how I can reduce it in some way.
Week 16 I finally got to meet my midwife, not only did I have to tell her about my experience of misdiagnosis in early pregnancy I had to educate my midwife on hypersalivation.
Week 17 came and I wanted to return to work - I felt my nausea was controlled (still persistent but more manageable) and after 2 days at work, I was told that due to my hypersalivation I was no longer able to work. For me to resume work, I would either need to seek a medical solution or try and swallow. This knocked me back mentally and I returned to the psychiatrist I asked to be referred to by my Midwife, voicing my current situations with work.
She suggested I try an eye drop which was been shown to be helpful in psychotic induced hypersalivation. After consulting with the hospital pharmacy I was prescribed it with strict instructions to not use any more than advised as not safe in pregnancy otherwise. I tried it for 2 times and found it did not have any effect at all with the amount of saliva. So I chose to discontinue the medication as I felt I was already on such a large amount and had already been fear talked early on in my pregnancy about some of the medication I am on. I did not want to risk anything anymore for my future babies health.
This meant I was not able to return to work. Having my employer suspend my work, without any possibility to continue working light duties, or in a different capacity did not help me progress positively mentally. So not only had I lost my independence as a healthy strong willed woman, I get the pregnancy from hell and I’m forced to stop work at a time I was able and needing to support my very soon to be growing family. I finally felt physically ‘better’ but my employment situation added to my seemingly never-ending anxiety and depressive emotions.
I had not been able to work since week 8 of my pregnancy, I am now isolating myself in the house because of the constant hypersalivation. It made any social situation extremely awkward and hard, as drool would just drip and come out of my mouth. If I ever wanted to communicate or smile I would let the saliva start collecting in my mouth to only then spit or spit it in a towel. I felt like I was dirty as it would collect in my mouth, I felt like I looked like I had some kind of disease.
I basically had a spit rag in my mouth the entire time, from week 11 to the second that I gave birth. If I had to leave the house I always had three towels to soak up the excess saliva, few vomit bags and plastic bag for storage. I had to be organised and think ahead, my labour bag mostly consisted of towels for the saliva. If I did leave the house I would be endure stares from strangers looking at me as if I was dirty. This pregnant lady with a sopping wet towel over her arm bringing it to her mouth every few seconds.
I was hyperaware on what I could and couldn’t eat (when my HG allowed) as the hypersalivation would leave my mouth feeling dry but still have excess saliva. My mouth would feel rubbery and or furry. I learned how to go to sleep with a towel in my mouth and never ever would let go of it - in fear someone might pick it up and realise how wet and gross it is. I’d spend hours in the bath for normal pregnancy body aches but also because I didn’t need to catch the saliva I could just spit it out in the water.
During my pregnancy, I only ever saw one post on instagram from Pregnancy Sickness Support that confirmed my condition to be real and not in my mind. Google and the hashtag hypersalivation talked about cats and their struggle of excess saliva.
Although the Pregnancy Sickness Support Group post had only a few comments on it I found others sharing their experience and content from that. It also gave me the medical term its know by - Ptyalism (P is silent).
To any other Ptylism mamas who reads this: Know this. It was hard - SO FUCKING HARD but it DOES go away. As soon as you have your baby earth-side it stops, or at least a few days after. The nausea and my hypersalivation disappeared - it was instant and abrupt, both gone and almost like I made it all up, just like a dream. Each day it gets easier, and it does - but there are days I catch my saliva increasing and I still strangely need to spit in the shower each time I get in it. I don’t realise I do it until I have done so. Timely reminder of a pregnancy that was extremely difficult but I survived and now using this energy to tell my story. Almost 3 years on, I am working on putting out more content, sharing my experience and education everyone who is interested. I don’t want any mama to feel isolated and lonely like I did. Ptylism was all consuming, messy, overwhelming and tiering along with my HG.
I’m forever grateful to my husband for being my rock, he was the best support and shoulder to cry on. From cooking everything possible, finding answers when I wasn’t even able to seek them myself and being my advocate and supporter.
MOSLTY I’m proud of myself for getting through it - I DID IT. That was one hard fucking year under my belt but so totally worth it.