My name is Esther. Here is my story.

My name is Esther. I am 51 years old and I live in Kingscliff Australia. I have been Living with Sheehan’s Syndrome for 19 years diagnosed only 6 years ago.

Here is my story.

When I was pregnant with my second son in 2004, I had a large bleed at 23 weeks and received a blood transfusion, thankfully the bleeding stopped and I was put on bed rest with placenta previa for the remainder of the pregnancy.  

At 38 weeks I had an elective caesarean, after our healthy baby boy was born, it came time to remove the placenta.

This is when we found out I had placenta accrete and my doctor couldn’t stop the bleeding I was put under a general aesthetic  and woke up many hours later in intensive care.

We were told I had lost a life threating amount of blood and was lucky to be alive.

After 10 days in hospital I was unable to breastfeed as I had no milk. I was told by my Doctor that my body wouldn’t produce milk as I was too sick fighting for my life.  At this stage nothing was ever mentioned about the possibilities of pituitary failure.

Struggling as a mother of a new born baby and a 2.5 years old toddler I was constantly tired, weak ,miserable and overwhelmed, I never recovered to my normal healthy self. This is when I was diagnosed with postpartum depression.

Life was a constant struggle I suffered in silence most of the time and just put it down to the busy life of a mother with two young boys.

I told multiple GP’s my birth trauma story when looking for answers to my decline in wellness but pituitary failure or Sheehan’s Syndrome was ever mentioned.

My first crisis..

“Episodes” is what we used to call them.

Two months after my son was born I got up in the middle of the night with stomach pains and nausea this was followed with diarrhoea and excessive sweating, dizziness then a loss of consciousness.

I woke up on the bathroom floor in a pool of sweat and feeling very unwell weak and thirsty. I hit the basin on the way down and gave myself a nasty black eye that lasted weeks.

I was admitted into hospital with unexplained abnormal bloods and abnormal electrolytes I recovered and was discharged with gastro.

 I had another 4 episodes just like the first one over the next decade, I was missed diagnosed with gut issues IBS, infectious disease of the gut and possible Crohn’s disease and vasovagal episodes.

Our busy lives went on and my health went to the bottom of the list.

I lived with fatigue, muscle stiffness and weakness in my body, mood swings, depression, nausea, and loss of axillary hair which later I find out this is one of the first signs of Pituitary Failure.

In my late thirties my cycles were very irregular. I was desperately trying to have a third child. I was given blood test as my periods had stopped all together.  I was told by a GP I was in early menopause and to take HRT and get on with life and having more children was no longer a option for me. I can’t explain the overwhelming emotions I had at this time. It was such a hard time.  

Six years ago, so I am 45, I had a terrible headache it wouldn’t go away it progressively got worse over the day then came the gastro and then loss of consciousness I woke in a pool of sweat, I didn’t recover as quickly as past events. I was really sick this time.

An ambulance was called and I was admitted to hospital. No one knew what was wrong just my bloods and electrolytes where abnormal.

 I was hooked up to a ECG machine this time, I got sick with the vomits I knew I was going to pass out. The ECG reading was a total heart block at the time before I passed out.

I was told that I needed a pacemaker. I was transfer to the private hospital, and given more tests where it was decided that it may be a endocrine problem not a heart problem.

I was discharged after two weeks with a referral to an endocrinologist, and an MRI of partial empty Sella syndrome.

The endocrinologist told me it could be a pituitary gland issue! BUT my cortisol levels at the time of testing where fine.

The only way to prove I was cortisol deficient was to have a ITT (insulin tolerant test) this will show if I produced cortisol in a crisis. 

Although he didn’t think this was necessary as he didn’t believe it was a cortisol issue and he didn’t know where I could get the test done!

I left feeling deflated confused and very frustrated.

A friend of ours who was a endoscopy doctor told me I might have Sheehan’s Syndrome. He said not to give up as it is so rare and hard to diagnose.

After reading the signs and systems of Sheehan’s, I knew I had it  I just needed to prove it.

 I found another Endocrinologist who also told me that I didn’t have Sheehan’s Syndrome as my cortisol was fine on blood test. I demanded I was given the ITT test. The test was terminated after I failed the Cortisol, ACTH and Growth hormone.

I was given hydrocortisone tablets with sick days plan, an emergency injection kit and told to wear a medical alert bracelet at all times.

Being told I would have to take pills for the rest of my life, was daunting.

I was relieved that I finally had an answer, but I was still left in the dark and felt so alone with not a lot of information. I had just been diagnosed with a rare chronic illness with not a lot of information. It has been a scary lonely journey.

Fortunately, I haven’t had a crisis for over 6 years, I have managed sick days through trial and error and learning about my body and knowing the early signs of sickness.

My life really changed last month when I found Maternal Pituitary support on Instagram. I am so thankful for this group. The educational chats with specialist have been so informative.

I am learning so much from a community of supporting women who have been struggling with the same issues as me, supporting each other and learning together. It comforting to know you’re not alone.

I realise creating awareness is so important with Sheehan’s Syndrome as this life threating illness that takes far too long to be diagnosed.

I am just so thankful I can help educate so no one has to go through I went through for far too long.

Esther