One private obstetrician reviewed my hormone results and, after hearing that I had exhausted all other options, prescribed progesterone to induce menstruation. I began researching my symptoms and came across information about pituitary conditions, which led me to suspect Sheehan’s Syndrome.

Q: What would you like patients to know about making the most of an endocrine nurse’s expertise?

A: Be open and honest about your symptoms, concerns, and how you’re feeling day-to-day. Don’t hesitate to ask questions, no matter how small they may seem. We can help provide education, guidance, and practical advice.

Early Signs: What to Watch For

Heather:
My symptoms came on fast because my case was severe, but for women who might have a more gradual onset, what early signs should they look for?

Dr. Thomas:
That’s a great question. Sheehan’s can vary widely. The two signs I most often associate with it are:

Difficulty with milk production. If a mother’s milk doesn’t come in, that can be a red flag. Of course, there are many other reasons for low milk supply, so we have to be careful not to jump to conclusions.

Lack of menstrual return. If menstruation doesn’t resume several months after delivery and after stopping breastfeeding, that’s another clue worth investigating.

Because these symptoms can take time to become apparent, many women don’t realize something is wrong until they’re months or even a year postpartum.

Alarm bells should be ringing by now, but they aren’t. My partner can tell something isn’t right during his short visits (Covid restrictions were still in place). From my WhatsApp messages, he thinks it could be the baby blues. I didn’t have them last time, but maybe this time is different. Postpartum depression isn’t the problem though.

The pain medication barely touches my headache. When it wears off, I cry in pain and ring the bell for more relief. I’m breastfeeding, so paracetamol is all I’m allowed. It takes the edge off — sometimes — but not enough.

Something strange is happening. I’m calling the nurse for help with things I easily managed after my first birth — like getting out of bed or lifting my baby. My obstetrician visits every morning, bringing warmth and optimism. A group of medical students follows him, eager to learn. Occasionally, I become confused, but I try to hide it. I still don’t realise something serious is going on.

I am regularly asked: "Are you having any more children?", "When are you thinking of having another child?".  This causes me great stress and upset. 

Adrenal Insufficiency in maternal pituitary conditions is caused by a deficiency of the hormone ACTH. This stands for Adreno-Cortico-Trophic Hormone, which is normally released by the pituitary gland.

When these ACTH pituitary gland cells are damaged, the hormonal feedback loop, called the Hypothalamic – Pituitary – Adrenal Axis (HPA) stops working as it should. This means it can no longer regulate the amount of cortisol in the body.

When it comes to your partner, have proactive communications to put them in a position for advocating and supporting you when needed. Two specific recommendations are/

• Familiarize yourselves with the symptoms of adrenal crisis so they can identify and help you if you’re not in a position to help yourself. 

• Make sure they know where your emergency steroid shot is located and how to administer it if needed.

• If you are doing blood work that requires fasting and abstaining from your meds, work with your partner to have their support - especially if you have young children that may require your support in the middle of the night. Getting up to care for kids in the middle of the night is taxing on your already delicate system and you’ll need the support for any middle of the night needs the kids might have. 
  

" Inside your head sits the pituitary gland. It's level with the bit between your eyes. It's only the size of a pea; it's small but mighty. The pituitary is a superhero because it looks after your whole body. It sends out hormones which are messengers made of special chemicals to help your body stay well. Mummy's pituitary was injured and she was very poorly a little while after you were born. The medicines replace the messenger hormones her injured pituitary can't send out any more. Mummy will need to take these medicines every day for her whole life. "

We are incredibly grateful to the All-Party Parliamentary Group for highlighting these failings in the care of women and babies. We support the recommendations of the inquiry, and we hope the Government makes these vital changes to improve childbirth for women in the future. We were privileged to contribute written evidence as an organisation and as individuals. We were honoured to be invited to attend the launch of the inquiry, at the Palace of Westminster yesterday 13th May. We are truly inspired by the determination and drive for change of all involved.

I received criticism in the beginning of my parenting journey, which stuck with me and had a profound impact on my mental health. I had comments such as ‘Noah won’t have a good immune system now’ ‘you’re just too lazy to breastfeed’ ‘ Your child stinks because you formula feed him’ ‘you’ll never have a bond like a breastfed kid has’ I would blame myself if he became ill or has a flare up of eczema. I prayed daily to wake up and this be just a dream and by some miracle my body would go back to ‘normal.

My quest for answers has been 11 years long and I’m still searching. So far I have been diagnosed with anxiety, depression and perimenopause. I had never heard of Sheehan’s Syndrome until last year, and I’m currently 8 months into a 12 month wait to see an endocrinologist in the hope that I can finally get the help I need.

The theme of this year’s maternal mental health week is “rediscovering you”. The more I thought about this, the more I realised that presenting helpful ideas on “how to rediscover yourself” could become yet another pressure on the to-do list. Filed next to: lose weight, get fit, get some sleep. Every mum is short on time, but the number of tasks hanging over a mum with maternal pituitary condition is utterly overwhelming.

Of course the blood tests were a mess, with failure of growth hormone, thyroid hormone and sex hormones. The doctor kept asking “are you sure you didn’t lose a lot of blood?” It was like it didn’t make sense for her!

I encourage people to think about how they might want to ask questions, and ask questions about their care in early pregnancy if you can. The aim is that you feel respected at any maternity contact and that you are able to safely ask any question you want and to feel your health care team provide you with a good response that hears and validates your concerns.

I encourage you to explore the realm of rare disease. I believe that you can find personal and professional fulfilment working within this community. This is not to say that there aren’t difficulties and frustrations, but working in the rare disease field is a great choice for anyone looking to overcome challenges and advocate for change.

Running a newly formed Community Interest Company when both Directors have Sheehan's Syndrome does have its challenges! We have both been on a health rollercoaster over the past few months. We have always had the rule that we work when we can, we work when we're well and our health and family come first. That's why, from time to time if we're a little quiet, you know why. That said, we are totally committed to MPS in the long-term and we want to bring about much needed change and offer support to those who have been impacted by maternal pituitary conditions.

I always consider the years immediately after the birth of my daughter as ‘The Dark Years’. I have very few memories of that time. I don’t remember Heather’s first words (although highly likely to be Dada) and her first steps. However, to be fair, what is more important Heather is now a well-rounded individual of 32 years and her mother is very proud of her.

I used to be a professional athlete and I have never had any doubt that I would be in great shape 6 months after delivery. Unfortunately that didn't happen. During those 6 months I had 2 carpal tunnel syndrome surgeries, I spent one night in the hospital with stroke symptoms, and I was hyperthyroid and then hypothyroid. My baby slept all night. I woke up at 2 a.m. and I couldn't sleep until 4 a.m. I was exhausted every single day. 

My name is Esther. I am 51 years old and I live in Kingscliff Australia . I have been Living with SS 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 removal 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.

I also need you to know that fixing the centuries-old gender health gap is not your responsibility. Regardless of what government ministers may think, any bad care you receive is never your fault. It’s not because you didn’t try hard enough, didn’t get enough second opinions or didn’t make enough complaints; it’s because the system has failed you.