PCOS and Me

This is a long read but worthy as a need to explain my ups and downs dealing with PCOS (Polycystic Ovarian Syndrome). I wish to instil a glimmer of inspiration to those of you battling with this disease/syndrome. I understand the difficulties of feeling worthless as a woman. It’s difficult to face the reality of infertility. It’s hard for people to imagine feeling helpless and to not be in control of your body on a daily basis.

PCOS or Polycystic Ovarian Syndrome has been a part of my life from the age of fifteen. It’s quite possible, I may have been suffering from the age of nine years since the start of puberty.

The symptoms of PCOS became noticeable at age fifteen, my periods were quite scant and I’m tired all the time.

After numerous visits to the school nurse. I get referred to see a gynaecologist at my local hospital.

The gynaecologist prescribes the contraceptive pill to regulate my menstrual cycle.

I take the tablets for three years.

At age eighteen I’m told to stop taking them.

That was when my hell started!

I went from having a monthly period controlled by medication to then having:-

  • periods that would last for 3 months
  • tiredness
  • weight gain
  • crying for no reason
  • nausea
  • bad skin
  • needing to sleep for 12+ hours per day

I would visit my doctor weekly begging for him to help me.

After the constant nagging, I’m given tablets to take.

These tablets are taken for 7 days to stop my period if it lasts more than 7 days.

That was it! No further help.

WHAT’S WRONG WITH ME

Photo by Alex Boyd on Unsplash.

In my late teens/early 20s I was working for a reputable company and saw my future as sorted.

Way back when, back in the 90s, landing a job at a place like this you were told “you have a job for life” how times have changed!!

PCOS was causing me to take a lot of time off from work and when I was at work I would be falling asleep at my desk. A lady I worked with, 20 years my senior had just had a hysterectomy. She noticed that I had been struggling at work and asked me why I was feeling the way I was.

 

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I explain my symptoms. She said my symptoms were similar to her’s. She’d been suffering from something called endometriosis.

Due to only being 20 years old I was very embarrassed talking about my symptoms and would downplay them, especially when I had the dreaded back to work interviews, but then personnel arranged for me to have a meeting with them and my male manager (how embarrassing!!!) due to the amount of time I was taking off and I had to explain everything to them.

This was the best thing I could have done.

My manager’s wife was a gynaecologist. He went home and explained my symptoms to his wife. The next day he explained his chat with his wife and expressed that I needed to have a scan urgently. His wife believed I had endometriosis or polyps.

Luckily with work by my side, I’m determined to get answers instead of hearing that “it’s just your hormones” line.

My visits to the doctor became even more regular to his annoyance. He was telling me to get on with my life as lots of women have hormonal issues.

And wait for it!!!

He even expressed how done by he was. You see, he doesn’t earn very much money working for the NHS in comparison to doctors in America.

Not my problem pal!!

He would constantly belittle me. Maybe it was due to my age, I was only twenty years old and he may have felt I wasn’t worth a referral to the hospital.

To this day I can’t fathom why I was treated this way.

Anyway, I finally got the referral!!!

I attended a scan, now this is a story. I was told to drink a gazillion (exaggeration) litres of water as per usual. I went in to have my scan.

The lady sonographer puts the jelly on my belly and proceeds with the scan. Suddenly the cheerful face that greeted me into the room looks worried.

She runs out of the room leaving me on the bed.

I’m absolutely petrified. I’m thinking the absolute worse, I’m quite sure you can guess what I was thinking!!

She returns about 5 minutes later with a senior male sonographer.

He explains that they have to do the scan in a different way. I have an internal scan instead of the conventional scan.

Whilst doing the scan I remember them laughing. He say’s “don’t know why you couldn’t see those”; she say’s “I know, I’ve never seen ovaries that large ever”.

I then remember the numbers 20 and 23 being mentioned; I now know that meant one ovary was 20cm and the other 23cm.

The senior sonographer then explains (in a matter of a fact way) that I have something called polycystic ovarian syndrome.

In my mind I’m thinking…

Ahhhhh Great, now I have answers.

What the hell is that!!!!

He tells me a consultant will explain what it is and he apologises for unprofessionally laughing at me. My anatomy is not like the beautiful pictures seen in textbooks, which usually looks like this:

Wikimedia Photo

Instead, my ovaries are behind the womb, causing panic to sonographers. So after years of having scans, I politely inform them, to not have a repeat episode of sonographers running out of rooms.

Over the next year, I go on to see different gynaecologists at my hospital. They explain

  • I have PCOS.
  • There is no cure.
  • They don’t really understand why women get it.
  • There could be a genetic link
  • They explain that my ovaries are very large covered with cysts.
  • To top that, they tell me it would be unlikely I’d be able to have children without IVF (in vitro fertilisation).

They offer to help me, when and if I decide I want to have children. And further inform me that if I were older they would recommend a hysterectomy.

I know!

A lot for a twenty-year-old to take in!

I’m told to go on my way and take the contraceptive pill.

Great!! I have the answers. Or do I.

From here I go through an emotional nightmare.

I take the contraceptive pill which controls my cycle but I start having problems with my stomach.

I experience problems with bloating which makes me look pregnant. In fact, people would ask me if I was pregnant which puts another dent on my emotional health. It’s so hard to bare coming to terms with how you look after being told the chance of experiencing motherhood is very slim.

I felt worthless as a woman. I don’t feel like a woman. Everyone around me is pregnant. I’m not ready for children but I’m jealous that these women can do something that I can’t do.

I have a regular cycle but I’m:

  • constantly crying
  • bloated all the time
  • suffering with IBS
  • still needing to sleep constantly
  • have problems with my hair and skin
  • putting on lots of weight, especially around my tummy

This is it for me, this is it for the rest of my life.

I’m still visiting and annoying my doctor as much as before and feel in a worse state than before diagnosis.

I don’t know about you. If I’m told I have something wrong with me I like to be sat down and told what and how I can manage my symptoms. I want to know what the future holds for me. Unfortunately, this is something that conventional medicine struggles with. There is very little empathy. Maybe this is because they see lots of women like you and I or they have very little time to spend on each patient.

My constant visits to doctors and referrals to gynae continue for another two years. At this point, I ask to stop taking the contraceptive pill. My emotional state wasn’t good and I was battling with IBS.

After stopping my medication my irregular cycle returned and my IBS became very bad.

I’m getting very little information from doctors. I decide I need to stop relying on answers from others and look for answers myself.

Now, bare in mind this is before everyone had a smart phone and instant access to Google. So off I went to my local bookstore and I find the book that changed my life!

Lights!!

Halo!!

I really feel like this about this book…

This book explained the whats, the whys and the hows.

At last I was finally getting the answers I need. This book explains the powers of nutrition and exercise to manage symptoms. Up to this point, not one doctor has mentioned this to me.

At last help, I knew and still know that there is no cure but I just want a better life and I’m ready to give anything a try.

This book explains the reactions of food on the PCOS body and the benefits of exercise. At the time my diet was dreadful and exercise non-existent. I was reluctant to go to the gym as I had previously attended the gym in my teens. I had become quite muscular during my short gym stint and didn’t want that physique. But, I clearly remember a brief improvement in my symptoms but hadn’t put this down to exercise.

Being a bit of an introvert I opted for exercising at home instead of joining a gym. I bought some exercise DVD’s trying different types of exercise videos and for me, Yoga (to my surprise!) resonates with me the most.

At that time yoga was starting to become popular, Madonna and Geri Halliwell being fans. I bought Gerri Halliwell’s DVD and Nicole Kidman’s sister had a DVD and I bought hers too.

I really enjoyed the Kidman DVD which introduced me to Ashtanga Yoga. Ashtanga Yoga is a regimented system of postures. You do the same postures (exercises) with each practice. Lots of yogis enjoy this style of yoga as you notice progress in your body quite quickly.

I must state that Ashtanga Yoga may not be suitable for all. I’ve trained as a yoga teacher since starting yoga. I have an autoimmune disease as well as PCOS and a little wiser now at 41 years old. Due to my issues with an autoimmune disease, I have to practice yoga differently these days. My body requires a more gentle practice due to it easily becoming quite hyperactive. If you’re looking to start practising yoga. It’s important to experiment with different styles of yoga. I recommend starting with a gentle practice.

My diet was appalling, I never ate fruit and vegetables. I decided this needed to change and slowly changed my diet.

 

I was determined to stick with this regimen. At this point, anything was better than what I had done. I was determined to not go back on the contraceptive pill.

After a few weeks, I noticed remarkable differences in my body and more importantly my mind. The diet was the most difficult but yoga for me was the best. In fact, I got to a point that I practised daily as if I missed a day I wouldn’t feel well. My partner (then and still now) would comment that maybe I needed to practice yoga as I seemed a little moody. At the time I would get upset by his comment but I know now that it was coming from a caring place and he was right!

I continue to practice yoga and eat healthy. Over a period of three years, I lost 2 stone (28 pounds in weight) reducing down to 9 stone (126 pounds). The majority of my weight loss was around my tummy area. The tummy area is a particular spot where most PCOS women hold onto weight. Typically, being an apple shape.

My lengthy periods disappeared, adopting a more regular cycle. My mood improved, I had more energy, the bloating disappeared and my skin and hair improved. I felt fantastic!!.

I then researched and found out this new system of eating was called Nutritional Therapy. I decided to take a course to find out more and to continue to improve my good health.

 

Are you a PCOS Sufferer?

Would you like some relief in your symptoms?
How about some help from someone who knows what you’re experiencing?

Click the link below and find out about the Radiant Nu Beginnings Program and how I can help you!!.  Pop over and have a look!!

Tell Me More About The Program 

 

My mindset changed totally.

  • Less crying
  • fewer feelings of worthlessness
  • I enjoyed the food I was eating
  • I loved my practice of yoga.

This continued for 3 years.

Then in 2004, I felt very ill. I was feeling nauseous and tired. I was so disappointed, my symptoms were returning.

How can this be, I’ve been doing everything right!

I was due to go out to a friend’s birthday meal. I felt dreadful, suffering from nausea and bloating. I find the energy to go but can’t eat a thing. A friend asks me what’s wrong and I explain that my PCOS symptoms have probably returned. I have had symptoms of nausea with PCOS, but I had never experienced it like this. I felt dreadful!!

The next day I had to attend another meal. This time it was for my dad’s birthday. I dragged myself to the restaurant (one of my favourite Greek restaurants) but couldn’t eat a thing.

The next day my family decided to have a house gathering for my dad’s birthday but I couldn’t manage it, I was too ill.

My brother calls me the next day checking how I was feeling. By this day I had uncontrollable vomiting, I explained how I was feeling he said. “Cheryl, are you pregnant”. No, I said. I’m not able to have children due to a condition I have.

The same day my friend calls to ask how I am feeling. She knows that I have PCOS, I explain that my nausea has now turned into constant vomiting and I can’t control it. She then says “I know you’re not able to have children, but could you possibly be pregnant”. “No, it’s impossible,” I say.

I explain my conversations to my partner and we decide to book an appointment to go to the doctor.

There have been times when I have had nausea with my PCOS. To my annoyance and embarrassment, I have felt forced to take a pregnancy test. It always came back negative, giving me yet another reminder that I’m not womanly enough. I know that I’m going to be asked to do a test so we buy a pregnancy test to rule out that question.

So, I take the test.

Wait for the result.

The result appears.

Oh. my. gosh. it’s positive!!!!

That can’t be right, so we go and buy two more tests and my gosh they’re positive too.

It’s my hormones!

I go to the doctors. I explain the symptoms I’m having and that I have taken three tests which say I’m pregnant. I express that they are wrong as I’m not able to have children. My doctor (a new GP) explains that although PCOS causes infertility there could still be a chance of pregnancy and that it is best to have their pregnancy test which is more reliable than a shop bought test.

I take the test and have to wait a couple of days for the result. I get the phone call a few days later and yes I am pregnant.

I have the result but in my mind I still don’t believe that I’m pregnant. I continue to vomit constantly, unable to keep solids and fluids in my body. I become extremely weak due to starvation, I’ve been vomiting constantly for 2 weeks.

I go to my doctor who recommends I go straight to hospital. I go to hospital where they put me on a drip to hydrate me and take lots of blood tests. I am then told I am suffering from a condition called hyperemesis. It’s caused by high levels of pregnancy hormones. I will write about my experiences with this condition in other posts.

They want me to have a scan. I’m so nervous about the scan. My heart is hoping that I’m pregnant. But my mind is telling me that this is hormones playing up and I’ve prepared myself to see a scan with no baby.

We go and have a scan, and my gosh, there is a baby, in fact, a very lively baby. They do all the measurements and they tell me I’m 11 weeks pregnant. I’ve seen the evidence, I am pregnant, how has this happened!! I was told that this would never happen.

This blog piece details a period of my lifetime, approximately 14 – 25 years ago. There is so much more information out there which promotes the use of exercise and diet for PCOS. I firmly believe my exercise and dietary changes are the reasons why I have my three children. I have been blessed with a handsome 13-year-old son, beautiful 11-year-old and 6-month-old daughters. My cherubs would not be here if it were not for making those drastic lifestyle changes in my early 20s.

With this blog, I hope I can help women experiencing what I have been through in the past. I’m not promising that you will have the same results that I have.

Maybe my words can inspire you to look at and make lifestyle changes to help you too.

Changing your lifestyle is not easy. You will go through ups and downs. But you will need to go through the down periods to appreciate the times when you feel fantastic.

Just remember to use the not so good times as a learning curve to force you to continue to promote your wellness.

 

Are you a PCOS Sufferer?

Would you like some relief in your symptoms?
How about some help from someone who knows what you’re experiencing?

Click the link below and find out about the Radiant Nu Beginnings Program and how I can help you!!.  Pop over and have a look!!

Tell Me More About The Program 

 

Access the Radiant Nu Beginnings Hub

Learning how to manage PCOS can make you feel more worthy!!