For many years I’ve been unwell. As a young woman I’ve faced many inequalities when accessing healthcare, I’ve been diagnosed with severe Endometriosis, Adenomyosis, Migraines, Fibromyalgia and more, but it took me almost losing my life to Sepsis to even receive these diagnosis’s, I was continuously told it was in my head.

For three years my thirst dramatically changed and I just simply couldn’t quench my thirst. It’s drastically worsened over the past year where I could drink multiple pints of water and still not feel hydrated!

I also had worsening symptoms in regards to urination where I had to be close to a toilet as my bladder couldn’t control the amount of water passing through. I went to the GP, he was convinced it was Type 2/1 Diabetes but after loads of tests, there was no answer.

They told me to cut down on my water intake because it could be anxiety related. I tried this thinking there was nothing wrong, my symptoms worsened – debilitating migraines, shaking, nausea/vomiting, fatigue and temperature fluctuations!

 I thought this felt strange and quite dangerous, I went back to my GP and insisted that there should be an answer to this. It was only last year when an endocrinologist in my local hospital arranged a water deprivation test, not the most pleasant procedure when you cannot control your thirst intake.

The whole process was horrific and not handled well, I had the whole test taken in a waiting room and as the hours went by I got more and more unwell, by the afternoon I almost collapsed in the toilet and was vomiting continuously, which to my knowledge must have been dehydration!

I was told the test must continue otherwise it would have been a waste of their time. I left the hospital at nine thirty that night after receiving the Desmopressin injection after the whole day in the waiting room. I was exhausted, but the injection made me feel like a different person!

The next morning, I had a phone call from the consultant saying I was borderline with my results and they wouldn’t pursue further treatment with me after asking for a second opinion and further investigations, I’m now being trialled on Desmopressin.

I couldn’t believe how uneducated medical professionals are on these conditions, especially AVP Deficiency. Finally, after the name change we can get away from the word ‘diabetes’ which has caused more damage than good due to the confusion of the conditions!

I must admit I am very lost with my new diagnosis, there was no face to face appointment or information leaflet but thankfully I came across The Pituitary Foundation who have been amazing and incredibly kind with heaps of knowledge.

I have recently used the helpline where I learnt more about the condition than in the hospital, with that I want to say thank you! We can only hope for continued improvement and change for pituitary conditions and AVP Deficiency.

If you have been affected by this story and would like more support please contact our Information and Support Helpline.