One Mother’s Quest for Answers

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.

Since having my youngest child in 2013, things haven’t been quite right. The labour and birth were weirdly enjoyable, I was relaxed and happy and having done it before 3 years previously I knew what to expect. However, this one was a lot quicker and within minutes of arriving at the midwife led unit he was in my arms! I didn’t even have time to get on the bed, I was still standing and after planning a water birth, they’d only managed to fill about an inch of water in the tub. After the initial euphoria and phone calls to family, it became obvious that there were concerns that I hadn’t passed my placenta. After several attempts of trying to pull it out of me by the cord, it was decided that I would need to be transferred to hospital to have it surgically removed. At this point, I was still very much none the wiser of how dangerous a retained placenta could be and thought nothing of the fact that they struggled to find any vein to get a line in, as unbeknown to me I was bleeding internally and losing a significant amount of blood. After a couple of hours' wait, I was taken away from my newborn baby for what I was told would be a fairly quick 45 minute procedure.

Three and a half hours later and two failed epidurals, a general anaesthetic and nearly 2 litres of blood lost I was wheeled back to my husband who had quite literally been left ‘holding the baby’ and thinking the worst.

My symptoms didn’t start straight away, but within a few weeks I was having severe night sweats and then later changes to my periods, where although regular they were much lighter, almost non-existent and consisted of dry, very dark blood. I had a few panic attacks which I'd never had before, I was suddenly very anxious and extremely low in mood to the point where I was having suicidal thoughts. I was forgetting things and beating myself up over it, my work was suffering as were my relationships. It was a horrible downward spiral of self-loathing, thinking I couldn't cope on a day-to-day basis with normal life stresses. But looking back and knowing what I know now, it was all hormone related.

During 2017, I had been desperately trying to get answers from professionals about the physical symptoms I was suffering with. Including hot flushes and night sweats, heart palpitations, very low blood pressure, huge peaks and troughs in emotions ranging from pure rage to crying spells (your typical PMS symptoms on an extreme level). I kept a diary of my cycle alongside tracking my mood, the hot flushes and the night sweats which were all interlinked. I knew it was hormone related, and I actually saw a gynaecologist and an endocrinologist but not one professional I turned to was willing to investigate further to help me.

In 2018, everything culminated in what was described as ‘burnout’ at the time. I was offered antidepressants and diagnosed with stress and anxiety and was signed off work.

I knew that I wasn’t clinically depressed, so I decided to go it alone. I stopped taking hormonal contraception, had counselling, retrained in a new career, and created a better work/life balance. Which is all well and good unless you have a chemical imbalance working against you! So, I felt better for a little while but in 2022, I was tired. And not just a little bit tired. Worryingly fatigued with a permanent headache. Even though my mental health had improved with a new lifestyle, more self-care and complementary therapies, I was still quietly struggling and got to the point where I wondered why I was 'just putting up with it'. I was struggling to cope day to day and for someone who had just turned 40, felt it wasn't right or fair.

I was convinced I was perimenopausal and because of my age, I wasn’t being taken seriously. Even then at 40, it took months for me to get a blood test that showed extremely low oestrogen and testosterone. I felt liberated that even though I had been complaining of symptoms, it wasn’t until it was in black and white that someone sat up and listened. Last year I was started on HRT for sex hormones and referred to a gynaecologist for review and this is how that conversation went:

Gynaecologist: "So you've had symptoms for 10 years? Early thirties is very young to be perimenopausal".

Me: " Yes I know, but they started soon after I had my second child and have become progressively worse over the years".

Gynaecologist: "Oh that's interesting, did you bleed a lot when you had your child?"

Me: " Yes. Retained placenta, post-partum haemorrhage, general anaesthetic, lost 1.5 litres of blood".

Gynaecologist: "Has no one ever mentioned 'Sheehan's Syndrome' to you before then?"

Me: "Errrr No".

So that is where I’m at. Even though the HRT has made huge improvements, I think this has highlighted other symptoms that continue to get progressively worse. My next stop is endocrinology and with the help and guidance of MPS and the knowledge I now have, I feel confident that I can get the answers I need.

Whether I end up with a diagnosis of SS or not, I am one more person who can spread awareness of maternal pituitary conditions and the impact that they have on women and their loved ones.