My Mum's Early Menopause with no HRT treatment

My mum passed away almost 3 years ago. She had just turned 70. She had been quite poorly for a number of years prior to her passing, with multiple illnesses. In the last year of her life she had become pretty much a recluse, afraid to go out. She stopped eating and she spent most of the day laying in bed. From having hour long conversations with her every day, she cut short most of the chats we had as she was too tired to talk or a coughing fit would ensue which affected her breathing so she needed to go on her oxygen machine. She lived 200 miles away from us but I managed to visit pretty much every month and more so towards the end as she was very fragile and admitted to hospital more and more frequently. Every time I visited I witnessed her simply fading away, in size and in energy. She weighed 5 stone when she died. 

 My mum has a terribly sad early life story. Born into extreme poverty in Belfast, with many siblings, a father who abandoned them and a mother who was addicted to prescription pills. Mum found herself pregnant with me (intentionally) when she was 19 (she told me she had nothing and wanted something that belonged only to her that she could love) and spent most of her pregnancy being dreadfully abused by her stepfather.

 

When I was born, her mother and stepfather sent her out to work and they became my main carers, mum was desperate for someone to love so got herself pregnant again a few months later. That baby, my little sister (we have different fathers) died when only a few weeks old. I think nowadays it would be classed as cot death but her death certificate says bronchial failure. Mum never told me who my father was, she didn’t know as there were a number of options. Since her death I have found my birth father. Mum would have been happy with who it is I’m sure. Anyway, that’s a blog for another time. 

 I want to use this one to tell you about my mum’s illnesses and how I believe many of them relate to menopause. Mum had me at 19, then 2 more children when she was 29 and 30. She then started with a very early menopause when she was around 40. That was back in the 1980’s when there was so much negative press around HRT and the side effects it could cause, cancer being the biggest fear. (The Selling of Fear) So my mum took nothing, yes NOTHING. Nothing for the flushes, nothing for her bones, nothing for her mental wellbeing, nothing for her heart or any of the drastic changes that were happening to her body. In her 50’s (my age now) she was diagnosed with severe osteoporosis, heart disease, and depression. She was given a calcium tablet to take each day and some anti-depressants for a few months. That was it. I watched my mum's life draining out of her. She had no enthusiasm for anything, the doctors just kept giving her a concoction of pills as she got more and more ill. No medical professional actually took any time to find any causes of an aged frail body in a middle aged woman. Perhaps it was because she was a smoker. She smoked her whole life. I think the doctors used this as an excuse for her illnesses and didn’t look any further. I am in no doubt that her early menopause was the cause of her frailty, the smoking didn’t help but was in no way the cause of all of the mental illness that accompanied her diagnosis of ill health. I miss her every minute of every day. 

2022 Update

I cannot believe that the last time I updated this blog was in 2015. Three of my babies are now fully fledged adults and I have a 13 year old who rules the roost. I thought I'd firstly give you all a brief summary of where and what everyone is doing since I last posted. Rose is 22, graduated with a Sociology degree (it's an Ology!), Jean is in her 3rd year of Edinburgh University working towards a Masters in Spanish and French and is currently living and working in Madrid.  Fleur is studying Natural Sciences at Durham University - in her first year. They fulfil the personalities that I predicted back in 2013 which is quite bizarre! Although Rose isn't quite so relaxed these days being a working woman with a huge London rent to pay - she has a long term boyfriend who I think she will marry - he was the first boy she kissed when she was 13 and aside from a couple of years break when they were finding out who they were, they are fully together and behave like an old married couple, showing love and annoyance toward each other in equal measure. She is living with a dear friend from school and works really successfully in recruitment. She takes on the role as the eldest child, makes great choices, is assertive, organised and funny. She makes me smile, a lot. My Number 2, who I speak to 100 times a day has become the bravest soul. Such a homebird and a mummy supporter, full of advice (which I trust and take). She takes my breath away with her courage and kindness. And Fleur, the brightest star, taking top place in her A levels in her school, she doesn't quite realise how amazing she is. Fun and enthusiasm should be in her name. She lights up a room with her positive aura. They are all equally amazing and fill my heart with pride and love.

And then there is my Boo. The other girls tease me that she is my favourite and I tell them that they are all equally my favourites (which is true) but it weirdly feels like Boo is all mine. She reads me, she gives me such joy, she looks different to her sisters, she squeezes me so tightly when I tuck her in at nights. I asked her last night to always squeeze me so tightly when she cuddles me, even when she is 30 and she promised she would. She has no inhibitions with who she is. She is decisive and fearless. She's the first pupil in her school in 25 years to be awarded 3 scholarships to her Senior School. The HRT I was taking throughout most of my pregnancy with her has obviously had no effect on her at all which is such a relief. My incredible child who should never have existed. How did I get so lucky with my 4 daughters. And boy is she loved. Totally and completely by all of us. Her sisters love her more than the world. She is secure and therefore confident to take risks and just be herself.

I'm doing well. 53 now and still taking Premique Low Dose, 1 tablet a day all these years with no real idea when this will end. I get my blood pressure taken once a year (which is always within normal parameters) but apart form that I have had no support or guidance, so no end in sight and to be honest I don't really want to stop as I worry that my bones will suffer. I had a bone density scan a couple of years ago to check my reading and they were all good, exactly where they should be for a woman of my age. The HRT is a definite must for me. I did try and take up running a while back but ended up breaking my leg! Didn't trip, didn't fall, my poor body just got a shock that after all these years I suddenly started exercising. I've now joined a gym and am beginning to run and swim. It feels good and is helping my body (and mind) stay in some sort of shape. The bone density scan was so reassuring as my mum died nearly 3 years ago and although she had been very poorly for a long time with many illnesses, one of her most serious problems was osteoporosis. She broke her hip the Christmas before she died by gently knocking into a bedside cabinet. Her bones had no strength left in them at all. I often think that if she had taken HRT she wouldn't have ended up quite so ill and reclusive. She was so frail that she was scared to leave the house in her last couple of years in case she fell.

There have been a lot of ups and downs since I last updated this blog which I'll talk about in future posts (I plan to update on a weekly basis now that life is less chaotic), the death of my mum, a pilgrimage to my birth place and finding my birth father, my children leaving home. The greatest joys centre around my family, they give me a purpose.

POF Trials

After giving birth to Boo, I began to worry whether my POF would have any effect on my girls or my sister - was it hereditary?  My mum had an early menopause so I guess it wasn't a huge surprise to her when I was diagnosed.  My sister, on my doctors advise took a blood test to check her FSH levels and they were at 7, which was great news. She has gone on to have 2 babies and I'm so thankful that she had no trouble conceiving.

I decided to look a little further into how this could affect my daughters and ended up taking part in some trials in London. My husband had seen an article on the internet from The Daisy Network asking for participants who had recently been diagnosed with POF. Boo was just over 1 when I started. It was a 2 year trial, (Treatment of Premature Failure) and I opted to go 'drug free', so no HRT at all. Every 3 months I travelled to London, had a bone density scan, an internal scan, blood tests and mental health questionnaires.

The blood tests showed that my FSH levels remained high, the bone scans showed that my bone density was reducing fairly quickly, and that I needed to take HRT (until the age of 55). The internal scans showed my shrivelled ovaries - they looked like tiny grapes, with no life left in them. That was the hardest part of it all really. The mental health questionnaires showed that I was okay but not brilliant! I imagine the previous few years had taken it's toll and I was a little depressed. Hard to imagine being depressed when I had everything I ever wished for, but the fluctuating hormones in my body took over and I had no real control over my emotions. I think my body was still menopausal, and with no drugs to control everything, it was seen as being pretty normal to feel the way I was feeling.

It was kind of sad finishing the trial but I did feel that I had helped a little with the research, above and beyond everything else, my daughters may find it a little easier to find information on POF should they ever need it. It also gave them the ability to go to London, to my trial centre,  and have some blood tests when they are older to check their hormone levels. At least that way they will know sooner if there is the possibility of having any problems with conceiving. I share everything with them, in a gentle way, but they are very aware that Boo was a miracle and they understand the reasons why she was such a surprise.

So, I'm now taking Premique again, for another 11 years at least. I do think it balances me somewhat. I don't always feel on top of the world but I'm now 44 and busy with all the girls and their lives, so I do believe that naturally life does become a bit more tiring and running around after the little one is certainly demanding at times.  She's such a character - phenomenally bright and still as feisty as ever!

And then there were 4!

On my way back from dropping my girls off at school this morning I started thinking about their personalities. It's odd to think of how different they are considering they were made the same way by the same people. I wondered if it has something to do with how I felt throughout each pregnancy and perhaps there was something in that?
Rose is very relaxed, almost too much at times!
Jean is super-sensitive, likes everything planned and doesn't like surprises.
Fleur has boundless energy and enthusiasm for everything life offers her.
Boo is a determined, feisty, independant child who likes her own company and everything her own way ... all the time!

My first pregnancy was very relaxed - I thought I knew a lot about babies as I'd helped my mum bring up my brother and sister who are 11 and 10 years younger than me. I got a massive surprise when Rose was born and realised I actually didn't know very much at all! The birth was amazing and easy considering it was my first and she came out very peaceful with her eyes open.
Jean's pregnancy was very fraught as I worried about losing her as I'd miscarried after Rose. She entered the world loud and red faced.
Fleurs birth was super speedy - all done in less than an hour. But she came out blue and I'm sure I didn't breath until they suctioned her and got her breathing again. I was so busy looking after the other 2 and running a business that the pregnancy whizzed by at such a speed.

As you're aware, number 4 was a completely different as I didn't know I was pregnant until 18 weeks! I spent the following 22 weeks in a sort of state of disbelief really. I became quite isolated from people, as their reaction to the pregnancy was strange and I had to hold all of my emotions and anxieties inside as I didn't want my true feelings to impact on the other girls. I basically just knuckled down and got on with it, on my own most of the time.  It's interesting that Boo, although she likes being with other people, is so independant that being on her own is good for her. It has to be done her way or else.  I guess that's like the pregnancy.

The birth was interesting. I had the same consultant as I had for the other 3 so when it came close to time, I asked for an elective inducement. I was so worried that I would be at home with the girls and have such a speedy delivery that they would end up acting as mini midwives. My husband was working in Brighton which is 3 hours from home.  Fortunately the consultant agreed and I was taken in and my waters were broken at about midnight. She was born at 9.10am the following morning. My longest labour.  Which was good for the paramedics and nurses that were training as they all took turns in witnessing my labour and her birth. My payback to the NHS!

Our lives now are a little mad really - not much time for anything - certainly no time for me or my husband. Although I'm not complaining. I always wanted a big family and I'm blessed to have 4 healthy gorgeous children. I count my lucky stars every day. The girls are now 14, 12, 10 and 5 and life revolves around making sure they are in the right place at the right time will all the right equipment. I wouldn't have it any other way. My baby turned 5 yesterday. I honestly still cannot believe how lucky I am to have her.

Surprise Pregnancy

Following on from my story below... So, within a couple of days I'd gone from grieving for all the babies I could never have to suddenly finding out I was over 18 weeks pregnant. Looking back I think I was in a daze - almost like being drunk - having everything I'd ever wished for but it all being a bit blurry and feeling like I was dreaming - just being pushed along with all the medical appointments rushing along - my 1st ante-natal appointment was on 21st May with the consultant professor who had looked after me throughout all my other pregnancies - he was somewhat surprised to say the least! I had to contact my doctors surgery and find my wonderful midwife who had cared for me for my previous pregnancies. So, I had my first appointment with Caroline which was very emotional. My next appointment was on May 29th for my 20 week Foetal Anomaly Scan. This was the most reassuring. I'd been so worried that the HRT would affect the baby. My consultant had reassured me that the HRT that I had been taking - Elleste Duet Conti June 2007-March 2008 and then Premique from March till May 2008 should not have any adverse affect on the foetus. I began to relax when we saw the fully formed baby on the ultrasound scan. It was perfect. But come on, how on earth could I not have known? The nausea, bloating, lack of energy ... I'd even been to see my GP - and he just changed my HRT - didn't even think to check if I was pregnant. It seems so unfair that they symptoms of pregnancy and HRT issues are the same - what is mother nature thinking about - so very cruel. I had a phone call from the original doctor who diagnosed me with POF - I think he was a bit concerned that I was going to sue him! Apparently they have now changed the full practice now in Northamptonshire, England. You see, I have it in writing that I have absolutely 100% no chance at all that I would ever conceive - this is a direct quote from the letter I received after my initial diagnosis " diagnosis is idiopathic premature menopause ... no prospect of this improving or of her achieving either a natural or an IVF pregnancy". Not once was I ever told that there was a slight possibility of conception. I have since learned that 5-10% of all women diagnosed do actually conceive. If I had of known that there was a chance of pregnancy, even a slight one, I would have done everything in my power to conceive. But to speak from my heart, it was only when I had come to terms with the fact that I would never be pregnant again that I actually conceived? Where's the sense in that? I do now know that women like me are now not completely written off and that the diagnosis letter is now a little less final and women are given a glimmer of hope. And for that I am thankful.