Early Menopause at 29…

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Lotus FlowerAt the age of just 29 I was diagnosed as post menopausal…it seemed to happen overnight, sneaking up silently without warning…back then (1993) there were few options and even less support, but everything happens for a reason even if we don’t know what the reason is at the time…

“Your test results show you have premature ovarian failure (POF), or early menopause.  It’s pretty rare.  You probably won’t be able to have children.  You’ll need to go on HRT to protect your heart and bones.  I’ll give you a prescription but your GP will be able to look after you from here”.

These are the words the specialist used the day I was told I had gone into early menopause.  I was just 29 years old and I remember it like it was yesterday… that was it, no advice, no support, nothing.

Do you know your body is very clever?  At times of great stress it can go into ‘survival mode’ and shut down systems that aren’t necessary for survival…reproduction is one of those systems…

Early menopause had arrived…

After a hugely stressful episode in my life in which I lost a lot of weight quite quickly (I ended up around 47kg), my body went into this ‘survival mode’ and my periods stopped. I had no symptoms apart from no periods.  After a few months I thought I had better get things checked out.  Blood tests revealed I had gone into premature ovarian failure (or early menopause).  Actually my FSH and LH levels showed I was post menopausal.

At that particular time in my life I was emotionally burdened by other events so the thought of not being able to have children didn’t really register.  To be honest I thought the doctor was talking s**t… how can stress cause menopause? I’d never heard such a thing.

Research, reasons and relating…

After a time, I started doing some research on the internet and found a support group in the States (there was no support in NZ at that stage).  I found comfort in sharing with other women going through the same issue.

It’s an odd thing, this early menopause.  On the outside you look just the same, normal…but on the inside your body has changed to that of a much older woman…you look the same, but you are different.

Your body has a secret – you can’t relate to women your own age anymore, particularly when they are getting pregnant and having families of their own, and you can’t relate to older women going through menopause at the ‘usual’ time in their 50’s, who laugh at ‘senior moments’ and ‘power surges’, as you’re not a senior and you feel far from powerful.

So, armed with HRT, which helped make me feel physically ‘normal’, I got on with it.  A few years later I decided I wanted to try and have children.  The specialist kept saying, “I’m not hopeful”, but put me on fertility drugs in any case.  Then the real menopause symptoms kicked in – mad hot flushes, highly emotional; hell, what have I done!

The drugs weren’t working and I wanted further investigation so the specialist sent me for a laparoscopy.  This is where they put you out, make three incisions in your stomach – one under your belly button, one at each ovary, pump you full of air and put a little camera inside to have a look see.  It was revealed that I only had one ovary; the left one was a “streak gonad” and had never developed.   That was all the information I was given.

I then went to Fertility Associates for more answers – was my remaining ovary ever likely to produce enough eggs to get pregnant?  I had an internal ultrasound and I was told that my one remaining ovary was a shrivelled up raisin, like a 54yr old woman (I was 32).  It was hard hearing that graphic description but at least I could get off the emotional roller coaster of hope and start to move on with my life.

I then wanted to know why this had happened, what had actually caused the early menopause.  By this stage my mother had died so I couldn’t ask her anything about her history.  Dad seemed to think she’d gone into menopause not long after having me (she was 38 when I was born).

So, along with a raft of further blood tests I got sent for chromosome testing.  It was revealed that I had a missing X chromosome which had impacted my reproductive system while developing as an embryo.  I was diagnosed as having “Mosaic Turner Syndrome”.

“A small deletion on the X chromosome may result in a single Turner syndrome feature, such as ovarian failure or short stature, and no other effects.”

Finally I had an answer, and I’m lucky to have an answer.  Most POF’ers will never know what has caused them to go into early menopause.

HRT and being a ‘guinea pig’…

I have tried various forms of HRT, vitamins and minerals to help my body cope with this early shut down.  Women are often surprised to hear I am on HRT and have been for over 20 years.  The thing is, those of us who enter menopause early are a different kettle of fish than those entering menopause at the ‘usual’ age of 50 or so…

The belief of the specialists and doctors is that we need HRT to help protect our heart and bones due to the long term effects of having much reduced estrogen…the HRT is only replacing the hormones our body is not producing, but should be producing at the usual age.

In reality we are actually guinea pigs.  There is no funding for research on the long-term effects of HRT as there are many more life threatening illnesses out there that need research more than early menopause.

I have tried various HRT options. The ‘natural’ option of estrogen cream and micronised progesterone unfortunately left me with a huge decrease in bone density of 8%, because my body wasn’t absorbing the cream in enough of a dosage to help my bones. Epic fail – I was absolutely gutted!

For around the past 10 years I’ve been on bio-identical estrogen patch and progesterone capsules. This has worked really well for me as I can control the estrogen dosage myself…I’m on a pretty minimal dose, if it gets too high I end up with breast issues (a lumpy, tender left breast which I’ve had checked out for anything sinister in the past…all is ok and totally hormone related).

Bio-identical HRT is still manufactured in a lab, but its chemical make up is the same as your body makes. I’d rather be on something that is as identical as possible than something that is completely foreign to my body…

Emotional consequences…

So, apart from the physical symptoms that affect the bodies of early menopause women, there is of course, the huge emotional impact as well.  Not being able to have children easily, or at all; deciding to use donor egg, IVF or other means to try and get pregnant; adoption, remaining child less etc.  It’s a lot to deal with.

I am thankful in some respects that I didn’t have a powerful maternal drive to have a child of my own.  It wasn’t something that I thought of deeply like a lot of women do. I decided donor egg or adoption wasn’t for me and that I would remain “child less”.

But it’s been hard over the years watching friends have children, then their children have children, and see the special relationships they have – something I wouldn’t experience. It wasn’t easy on many occasions – especially Mother’s Day in the early years of diagnosis and Christmas time – Christmas is for children and families…it sort of rubs your nose in it really.

Over time, bit by bit, I have found it does get easier.  I have not let it rule my life.  It had a big impact for a number of years but I’ve found that as I’ve got older and got on with things, I’ve come to a place of acceptance and amazingly, gratitude.  The diagnosis of premature ovarian failure has sent me on a path of exploration and amazing experiences that I couldn’t have dreamed of.

The path of gratitude…

After going through the physical and emotional trials that I have, it has made me so much more empathetic and caring.

I trained as a Bowen therapist and massage therapist back in 2003/04 and that led me to beautiful connections with others – helping them ease their own pain physically and having an empathetic ear, someone to listen to. And I grew into hosting womens weekend retreats. That time of my life was hugely rewarding. I felt fulfilled. I felt needed. I got to know what it was like to give, to help, to make a difference.

One of the absolute biggest gratitudes of my life came with my explorations of 2011, when I went to Bali for five months to meet a young 10 year old boy (Yogi) who I had started sponsoring, and to do some volunteer teaching at the Yayasan (not for profit school) he attended.  That experience was HUGE and the catalyst for major change in my life.

Yogi has given me something I never thought I would ever feel – a deep Motherly love. Even though he has a wonderful mother, father and family, I know I will always have a special connection with him and be able to help and support him in ways they cannot (particularly financial and other opportunities).

It feels wonderful to be there for him, if and when he needs that support.  He’s helped fill the void that was inside me that I didn’t realise was there until I met him, connected, and fell in love.

I share that journey here at www.balispirit-paula.blogspot.com.

I also now share the sponsorship of his sister Ari. They are my Bali family…Yogi is now 15 and Ari is 11 and they mean the world to me. I travel to Bali every year to see them. It’s always such a tears of joy reunion and a tears of heart break to leave, but we’re in each others lives for a reason and I know we’re in each others lives for a lifetime.

Paula, Yogi and Ari

Paula, Yogi and Ari 2015

So, if anyone reading this has fertility issues, or you know of anyone with fertility issues; please know, there is life after this.  There are many, many options available for you to experience motherhood – they just might not be exactly how you imagined.

And believe me when I say – when you give from the heart to someone who needs it, and appreciates it, that void will fill, and you will become all the more richer and blessed for the experience.

Where to from here…

It’s 24 years since my diagnosis, I am now 53 – the age when ‘normal’ menopause happens. I have friends going through it, struggling with emotional ups and downs, hot flushes, anxiety, sleepless nights. None of them are opting for HRT, so once again I’m ‘different’. But I’m completely ok with that. I don’t need to get validation from anyone for my choices. My situation is very different.

I’m now at the point where I need to decide to stay on HRT or come off it. Who knows what the long-term side effects are? BUT I do have to consider my quality of life. I do have to consider my bone and heart health.

Currently I have osteoporosis in my spine and osteopenia in my hips. This has been fluctuating for years. 2 years ago my spine was decreasing and my hips increasing. My last bone density scan recently had my spine increasing and my hips decreasing – WTF? I’m actually doing nothing different – I’m on minimal dose HRT and high dose Vitamin D – that’s it!

I need to do something about my calcium as I don’t eat dairy, but to be honest I’m over popping pills! I exercise regularly – mainly power walking these days, but will get back to lifting weights at some stage as this will also help hugely.

One thing is for certain – when (if) I come off HRT my bone density will get worse, that’s a given. And at this stage I don’t have any desire to go on bone density drugs – I’ve done the research, and I don’t like what I read.

So for now, maybe for another year or 2, I’m going to keep with what I know. I’m going to stay on the HRT because it’s working for me. It’s keeping me ‘normal’. I have no menopause symptoms and my bones are holding their own. My heart is healthy and I have great blood pressure and cholestoral.

I’m 53 but still feel in my 30’s (although don’t have the energy levels I had back then)…In my mind I am fit, strong and healthy, and I intend to stay that way!

This is me in Flores, Indonesia - June 2015

I LOVE to travel – this is me in Flores, Indonesia – June 2015

My advice to any woman finding herself in a similar situation – research, research, research. Do what is right for YOU. Reach out to the communities below, to people who understand. Grieve, be angry, be inconsolably sad, BUT don’t let it consume you for too long. Life is short. THERE ARE OPTIONS…and believe me when I say – treasures do await you…

Living life 2017

I am currently working on my book…a 20 year journey from first diagnosis to where it has led me…a journey of many twists and turns, a journey of huge growth, a journey of immense gratitude and love. I want to share that with you, so that you can have the knowledge and hope that life can be magical…with or without children and that your body will not decay overnight just because you have gone into menopause too early…

Please reach out to me if you have any questions or want to talk to someone that understands, or if you wish to be on my database to know as soon as my book is published – exciting!! Here’s the link to my Contact page.

I wish you blessings and strength on your journey…

Websites of interest in relation to early menopause (or menopause in general):

http://www.earlymenopause.org.nz

https://www.menopause.org.au/

http://www.daisynetwork.org.uk/

Websites of interest in relation to helping children (especially girls) in third world countries:

The Cambodia Charitable Trust

Daya Trust

Christina Noble Foundation

Free to Shine

Girl Rising

Websites of interest in relation to other support networks:

http://www.cmoma.org

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Comments

  1. Mariya Dimitrova says:

    Hi, Paula!
    I’m so glad I got reading your story. After 3 weeks I’m going to be 28 years old and I already have fertility issues – I can’t get pregnant and I started missing periods. It turned out that my mother got into early menopause at 29 years old, and her mother (my grandmother), got into early menopause at 36. I should probably get tested for genetic disease too. It’s funny, because when you type “early menopause” in Google, the articles are about women stepping into menopause at the age of 50… And when you try to explain to someone about your problem, they ask you shocked “Is that even possible?!” You should definitely write a book about this. You are very beautiful and inspirational woman. The joyfull spirit and shiny eyes of you can’t be replaced by some “normal bleeding uterus”. I wish you all the best and I expect to buy your book soon! 🙂

    • Hi Mariya,

      Thank you so much for being in touch, you’re the 2nd woman in a week to reach out so it’s really given me the inspiration to get moving on my book and get it out there! And thank you for your beautiful comment about my ‘joyful spirit and shiny eyes’…that touched me deeply 🙂

      Yes, it definitely sounds like you’ve got a genetic thread running there…I found it really helpful to get the chromosome testing done, it gave me my answer as to ‘why’ and that was really healing, and closure for me.

      Yes it’s frustrating that a lot of the information out there is for ‘normal’ menopause…but keep looking, I found a good support site here:
      https://premature-ovarian-failure.supportgroups.com/
      and the NZ Early Menopause site has a great reference page to look through with great links:
      http://www.earlymenopause.org.nz/links_and_resources

      Good luck Mariya, and please let me know if I can help further…just email me and we can even set up a Skype call to chat further if you’d like.

      Much love
      Paula x

      • Mariya Dimitrova says:

        Thank you very much, I’ll use your link references to go deeper in this topic. You are so kind! I’m not aware if someone, somewhere had written a book about something like that, so maybe you’ll be the first one that raises the theme. We live in a world with so much pressure, stress and other factors (influencing the genes), that in my opinion early menopause could become pretty frequent problem. Making a book will raise awareness and women from all over the world will be more informed that we are now. 🙂
        Best regards,
        Mariya

        • Thank you Mariya, there are a few books out there (see below)…and I’ve read a couple of them. They are always helpful to give different insights from others and some have valuable medical stuff in them. It will be very rewarding to add mine to the list of resources…to give understanding and hope to women out there struggling…
          Yes, it cetainly seems to becoming a more common problem…women are leaving it much later to start their families and sometimes that window has closed…a sign of the times and our lifestyles for sure.
          All the best for your journey Mariya, and please keep me posted as to how you are doing.
          Much love
          Paula x

  2. your post is such a wonderful piece. I just got married and need children I recently started having some pre-menopause symptoms ( I am 29) I am afraid to go to the doctor. Please tell me what to do.

    • Hi Mandi…even though you are afraid to go to the doctor, you MUST. You need to get your hormone levels checked and act quickly as the longer you leave things the less chance you will have of having a successful outcome re having your own children. You cannot waste any time with this.

      There are many advances in this area now so please don’t think all is lost. But you must find out for certain what is going on. Delaying it will not make it go away and at least you will then know exactly what you are dealing with.

      It may not even be menopause related…our hormones are very complex and it might be something completely different. Please, please go to your doctor as soon as possible. And if they won’t listen or take you seriously then go find another.

      Please let me know how you get on…sending much love and strength your way x

  3. your post was GREAT for me to read. I am 29 and was just told i am pre premenopausal which is such an awful shock to me since i am so young to be going through this. your post gives me hope and jusy want to say thank you for the inspiration i desperately need right now.

    • Wow, thank you so much Angela for your comment. It means so much to me to know that by sharing my experience it makes a difference to even one more woman going through the same thing. Please know my heart and empathy goes out to you, and if you feel the need to have more one-on-one contact please do not hesitate to be in touch (just use the contact page). I’m now 51 and have learnt a lot over the years, so more than happy to share anything I can with you, or just be there for you to share what you are going through with someone who understands. Kia Kaha beautiful woman… Love Paula

  4. Dear Paula, I stubbled upon your posting : Menopause at age 29. It was well written and so parallel to my personal story. I was 27 years old, in college when given this diagnosis. However, I had a child at age 22. Throughout the years, I searched for answers about this as it was difficult to accept at such a young age. Then in 2003, I took part in a study at The National Institute of Health in Bethesda, MD. I was 41 at this time and finally given the same diagnosis as you, POF and the cause was due to Mosaic Turner Syndrome. I am not short, nor have any of the physical characteristics that is associated with TS. While in this study, I was worked up in detail and they did a genetic profile that confirmed POF. Like you, I was glad to have an answer to the Why’s. I too had lost my mother and she passed just days after my daughter’s first birthday. I too found myself very lonely going through this journey when My peers could not understand. Now, I am 51, the “normal” age for The Change of Life…what I find difficult now is that there is no available information that directly relates to a maturing woman that has been diagnosed with POF. I keep wondering, if my body knows I am still young, yet I have been Post Menopause for several years and what are if any, the health risk. For example, I am post 24 years since my onset of Menopause, does my organs, heart, brain, etc. realize I am only 51 and may have another 30 years or so beyond The average Menopause age. I have not found any information regarding this issue under POF, OR Post Menopause…so if you have any information to share please email me. Thank you! I hope my writing is understood as I am using a small older IPad and can not arrow up…in this text box. Again, I really enjoyed your perspective on this subject. Thank you for sharing it as I am sure there are many women whom appreciate it as much as I did.

    • Hi JJ, Wow, that’s so fantastic that you found my site and my story and that we share very similar ages/diagnosis…unfortunately there is not much research being done about us POFer’s as there’s more common life threatening or life debilitating health issues out there. So, in answer to your query about your body knowing you’re still young and the effect of early meno on your major organs…I have not researched this myself. I know the effect of reduced estrogen has had a definite ‘aging’ effect on my bones and bone density scans now show osteoporosis…I can only assume there ‘may’ be a similar effect on the brain and heart…however, I’ve been on HRT since I was diagnosed at age 29 and so the hormones I’m artificially putting into my body are replacing those that my body should be producing itself but isn’t…to be honest, I don’t ever think of my body as aging – apart from the surface wrinkles and extra inches that are appearing ;)…I still feel vibrant, strong and healthy and I think the most important thing is your mindset…don’t ever think your body is aging early…keep healthy and strong and it won’t…BUT that’s just MY opinion, I certainly don’t have any medical evidence to back that up…If I come across any information about this, I’ll certainly let you know…thanks so much for being in touch JJ, it’s lovely to connect…I’ll email you personally too…best wishes, Paula :)x

  5. Paula, after all these years – I never knew! Beautifully written. XOX

    • Thanks Maree…it’s something I kept to myself for a long time but now, by sharing my story, if I can help one woman going through the same realise she’s not alone and that there is a good life to be lived regardless of children, then my job is done :)x

  6. Paula,
    We definitely need to meet. Read this: http://tracypepper.blogspot.co.nz/2007/05/menopause-is-good.html
    xoxoxo

  7. Thank you for sharing this Paula and educating me. I remember when I was 28 having hot flashes and going to the doctor, wondering if it was early menopause (I had no idea what else it xould be). In those moments before diagnosis, I went through the possibilities in my mind of what early menopause would mean. Fortunately,I didn’t have to walk down that path any further – the doctor ruled that out. The hot flashes did signal the start of some serious healing though and I’m grateful I paid attention.

  8. Thanks for this beautiful post Paula, having kids is something that many of us take for granted which is why it can be even more devastating when we can’t. My doctor warned me a few years ago that I should hurry up and have one soon as the longer I wait the less chance I will have. I definitely want to have kids of my own but after my doctors conversation I feel strangely prepared in case it’s not possible. I hope regardless of the situation that I can come out with as great a perspective as you have.

    • Thanks Serena, it’s taken a while to get to this place and it’s like any loss/death – as with all grief – time heals. It’s just another scar that is part of you who you are but it heals over and hurts less with time. I think there’s a lot more women prepared for the “maybe I can’t” as they leave having children to later…thing is there’s so many more options available these days so long as you are open to them. I guess my point is – don’t set your heart on one direction only as you never know what blessings you might be missing out on by doing that :0-)

  9. Hi Paula,
    What a great piece of writing. You have been through a lot! Yes we all need family connections and I am lucky to have 13 nieces and nephews so that is my family there. I think there is really something in the emotional changes that occur with early menopause. As you know, I went through early menopause in my 30s and it does mean emotionally and mentally, we are a lot older so to speak. Hopefully WISER! 🙂 It is a roller coaster but the coaster slows down and stops. It would be interesting to have a medical professional write on this too! Keep up the good work x Andrea

    • Hi Andrea, thanks for the lovely feedback. Sharing the experience with others going through the same thing has certainly helped as we both know and adjusting the mental/emotional barometer takes a bit of work but we get there in the end. There’s certainly a lot to learn about ourselves in the process.

  10. Paula that was very moving. I have always maintained that family is not always an attribute of birth. I have “adopted” brothers and sisters along the way. My eldest grandchildren are those children who belong to friends and colleagues, but they are much loved and I am just as much Granny Jan to them as I am Nanny to my own two. And you will be Grandma to Yogi’s children be assured of that.

    • Thank you Jan, I look forward to that day when Yogi (and Ari his Sister who I now also sponsor), grow up and have a family of his/her own. It will certainly be a life-long connection and one I treasure with all my heart.

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