Chronic Sheehan’s. The Symptoms not to ignore.

My path to motherhood started with a long fertility journey, followed by a miscarriage. After my miscarriage I got an infection and found out I was Group B Strep positive. I conceived again in 2018 following fertility treatment.

I was informed that being GBS positive could potentially cause harm to my baby during labour and it was recommended that I should take antibiotics in labour. Closer to my due date I was also told that if my waters broke I was to be induced because of the risk of infection.

I asked my midwife for a C-section. I didn’t want to be induced. My Mother’s and Sister’s waters had broken first and I had a feeling mine would too.

I had a meeting with a consultant. She said no. She said, “you have no reason to have one. You are low risk. Your waters have not broken.” What a strange thing to say I thought. I was in tears. Then a call from a senior midwife to ask how I was feeling and again to try and persuade me that the risks to me were greater having a c-section than a ‘normal birth’ as I was deemed low risk. I felt I didn’t have a choice. I did what they said. 

My waters broke on the 14 July, 6 days before my due date. And, you guessed it, I was induced. From here on, it was a long and difficult labour. 40 hours later my daughter was born on the 16 July. It ended in an emergency c-section. Because I had pushed for so long she was now quite far down the birth canal. A consultant came in and decided I needed an emergency c-section and during this they made a cut so they could remove her. Thankfully she was absolutely fine. I was stitched back up (although it turned out, not completely) and once on the ward I showed signs of a bleed. I held my baby once before I was taken into theatre again. 3.5 hours later I was back on the ward, but not before losing 3.2 litres of blood.

My milk didn’t come in, so I was unable to breastfeed. The medical staff all said it was due to the blood loss and my milk would be delayed.

My milk never arrived. As well as the hospital consultants, midwives and community health visitors, I saw two lactation consultants and the GP to get some prolactin tablets to encourage a let-down. Not one professional spotted this major early warning sign.

9 months after giving birth, in 2020, I noticed I started to feel quite unwell. My hair was coming out in clumps. I had lost my sex drive, my skin was dry, nails breaking, l was gaining weight and generally felt dreadful. And when I stopped and took a breath, I noticed that my NCT gang were full of the energy that I didn’t have - they were planning group runs up hills with newly bought running prams, whilst I was having trouble walking up the hill - I was shattered. I also realised my period still had not returned and began to feel concerned. I was expecting a delay to it returning, because the healthcare professionals told me that the blood loss could cause this. So, when my period had not returned, I put it down to that. I had various blood tests at my request following my labour and everything had come back fine.

I went back for more tests. It showed an under-active thyroid. Following the thyroxine medication, I immediately felt much better.

My period came back! I had never been so happy to see it.

Later in the year I had a creeping feeling that things were still not quite right. My period had vanished again, I was lacking in energy. I was gaining weight and really struggling to lose it, even though I was going to regular mum and baby exercise classes. I was irritable and felt low. I had my thyroid tested again in October 2020 and it was ‘normal’. At the beginning of 2021 I spoke to the GP again. They said they wouldn’t test my thyroid again until March/April. They were unconcerned about my period. I didn’t agree. I googled my symptoms and found a match. Sheehan’s Syndrome. I couldn’t believe it. I literally had every symptom listed, even the wrinkles on my face that I noticed have been coming on more and more over the past year! Dr Google said that Sheehan’s Syndrome is a damaged pituitary gland caused by severe blood loss during labour. It says it is rare in the UK. Some further research led me to a private endocrinologist, and I was in a lucky position to book an appointment for the following day.

My endocrinologist said he thought it was highly likely I had Sheehan’s. He confirmed it is rare in this country. How rare I wondered? He said they needed to rule out a pituitary gland tumour and for this I had to have an MRI scan. I would also need blood tests to check my hormone levels. He said if it is Sheehan’s the treatment should be straightforward and we would replace the hormones that are missing. One MRI scan, some blood tests and lots of sleepless nights later, I had a confirmed diagnosis of Sheehan’s Syndrome. It was a relief in some ways to have a diagnosis and in other ways incredibly frustrating and upsetting as I felt it could have been prevented. I wished I had fought for a planned c-section.

Three years later, I am eventually on the 5 hormone replacements I need. I began the last one - Growth Hormone - just a few weeks before my daughter’s 3rd birthday. I have chronic Sheehan’s. The pituitary damage shows over time, as opposed to acute, where it normally presents in the first few weeks. At the moment I do not have adrenal insufficiency, which is low cortisol, but I live in constant fear of this because I know other women with chronic Sheehan’s, where eventually they have become deficient in cortisol too. This part of the condition is life threatening. On the contrary, some women’s pituitary glands have improved.

There is still so much that isn’t known about this condition. Another ‘woman’s health problem’ that is massively under-researched and misunderstood.

I had a traumatic birth. I didn’t have the care I should have had, and every woman should expect when they give birth. I know now there were C-section targets in place at the time - to reduce the numbers and give more women a ‘normal birth’. Was I a victim of these?

There are many things I wish had been different.

The birth of Maternal Pituitary Support

I was put in touch with Jenn by a kind lady at the Pituitary Foundation. I went there looking for answers and was given a fact sheet. I asked if they had a specialist in Sheehan’s and the answer was no.

When Jenn and I first spoke, I was so relieved to have found someone like me. Someone who understood. I remember sobbing all the way through our phone call, it was spring 2021 and I was in the garden.

We vowed then that no women should face this alone. After huge amounts of work and energy, Maternal Pituitary Support was born in 2022. The aim is to support women around the globe, to campaign and raise awareness to reduce the time to diagnosis and to secure funding to research this little known condition.

What do we need to do to regenerate our pituitary glands?

We have to find out.