Living with PCOS

I was about 17 when I was diagnosed with PCOS. For those that haven’t heard of PCOS, let me explain…PCOS (polycystic ovarian syndrome) is an endocrine disorder that affects how a woman’s ovaries work.

It means that my hormones are out of sync and I make slightly more male hormones than if I didn’t have PCOS. I also have many small cysts (fluid-filled sacs) on my ovaries. The cause is unkown, but most experts think that genetics play a role.

Women with PCOS are more likely to have a mother or sister with PCOS and sure enough, my own sister has it. Although undiagnosed, my mum took 5 years to conceive, so she thinks she probably has it too.

We have talked about PCOS on IVF babble before but today I want to focus more on ways to really look after yourself and where you can find the support and guidance available to you.

My periods started when I was 14, but then they just came and went at sporadic times of the year.

My mum suggested I went to see the doctor to find out why I was so ‘out of sync’. Little did I know that my infrequent periods were a sign that I wasn’t ovulating and that 17 years later this would cause me so much heartache.

The doctor did the relevant tests and it was confirmed that yes, I have a classic case of PCOS…and that was it. No guidance.

No suggestions on diet or wellbeing to help relieve symptoms. No talk about what would happen when I wanted to think about starting a family. That was it. Diagnosis was delivered. Next..!

As I entered my thirties, the need to have a child became overwhelming and the fact that I wasn’t ovulating each month was both a total blow to my confidence and my state of mind. What kind of woman doesn’t ovulate?!!

I remember washing my hands in the loo once at work and overhearing a woman in a cubicle shout out to her friend in the next cubicle ‘Oh God, I’ve got my period”….can you believe, I actually felt envious! I wanted regular periods! Even when my period did eventually show its face. It was for nothing anyway, because I still wasn’t ovulating.

Without any guidance, I did nothing to help myself.

If only I had been given some idea of what I could be doing, perhaps I would have felt so much better about myself.

Today, there are endless support groups for women with PCOS. These groups offer women everything I could have done with. Advice on nutrition, state of mind, testing, stories from other women and so much more. The PCOS Awareness Association is an absolutely brilliant website, packed with information. They cover everything you could ever need to know about PCOS and really make you feel ‘normal’. Soul Cysters is another incredible website, so be sure to take a look at them both.

The first thing to remember is that you are not alone. 1 in 10 women have PCOS, making it the most common hormonal disorder among women of reproductive age, yet many women, like myself, feel embarrassed.

This is hardly surprising considering the list of symptoms that are associated with the ‘syndrome’ (what a horrible word!):

  • Fatigue – one of the leading symptoms reported among women with PCOS
  • Weight gain – this is caused by increased testosterone produced by the ovaries
  • Infertility – PCOS is a leading cause of female infertility. However, not every woman with PCOS is the same. Although some women may need the assistance of fertility treatments, others are able to conceive naturally.
  • Unwanted hair growth – areas affected by excess hair growth may include the face, arms, back, chest, thumbs, toes, and abdomen
  • Thinning hair on the head – ironically, PCOS can be the cause of unwanted hair in places you don’t want it but hair loss in the places you do want it.. on your head!!
  • Acne – other skin changes such as the development of skin tags and darkened patches of skin are also related to PCOS.
  • Mood changes – having PCOS can increase the likelihood of mood swings, depression, and anxiety.
  • Pelvic pain – pelvic pain may occur with periods, along with heavy bleeding. It may also occur when a woman isn’t bleeding.
  • Headaches – hormonal changes prompt headaches.
  • Sleep problems – women with PCOS often report problems such as insomnia or poor sleep. There are many factors that can affect sleep, but PCOS has been linked to a sleep disorder called sleep apnea.  With sleep apnea, a person will stop breathing for short periods of time during sleep.

The best way to come to terms with your diagnosis is to understand all you can about PCOS.

When you understand what PCOS is and why you are suffering from any of the above symptoms, you can work out a treatment plan. You will be pleased to know that there are many ways you can decrease or eliminate these symptoms and feel better. Your doctor can offer different medicines that can treat symptoms such as irregular periods, acne, excess hair and elevated blood sugar.

Many doctors prescribe Metformin, a medicine that makes the body more sensitive to insulin. This can improve menstrual patterns and help lower elevated blood glucose levels, insulin levels, and androgen levels. However Clomiphene (Clomid) is the most common treatment used to induce ovulation.

Aside from medication, there are many things you can do yourself to ease the symptoms.

Losing as little as 5% excess weight can help women ovulate more regularly and lessen other PCOS symptoms.

Hillary Wright, M.Ed, RDN, and author of The PCOS Diet Plan explains that a key reason why PCOS leads to other health problems is because it’s linked to insulin resistance, meaning your cells can’t absorb glucose properly.

  • Insulin is the hormone that helps control glucose.
  • Glucose is our body’s key source of energy, fuelling our bodies to function.
  • The amount of fuel we need varies all the time, but our blood sugar levels need to remain stabilized. Insulin helps regulate those levels.
  • Women with PCOS have a resistance to insulin, so we need to help our body manage this resistance and ensure our blood sugar levels are stable.

“Managing insulin resistance through diet and lifestyle is twice as effective as through medication,” she says.

Hearing this, we got straight on the phone to our fertility nutritionist Mel Brown and asked her what she would recommend in terms of diet.

The first thing Mel said was “avoid sugar!!!..as well as refined carbs. Refined carbs spike blood sugar. Instead, go for ones made from whole foods — like brown rice, oatmeal, legumes, fruits, and vegetables. You need protein and fibre and very little carbohydrate to regulate blood sugar levels.

Mel’s suggested meal plan

Breakfast

“Stock up on jumbo (big chewy) oats, full fat natural yoghurt, flax and chia seed powder, nuts and low sugar strawberries and raspberries, or whole rye/ black bread with avocado and eggs. If you need to lose weight then minimise the oats and bread, just a very small amount. No snacking, you don’t need to snack, lunch will come along! Snacking will cause small spikes in blood sugar and insulin. We also need at least five hours between meals to give our gut bacteria a fighting chance to get on with doing all its good work. But better to have nuts or a hardboiled egg than anything else, even fruit.”

Lunch

“In the summer, a big salad with filling protein-rich avocado, loads of greens, reds and oranges, with protein like chicken, salmon, prawns, eggs, beans and lentils and olive oil. Basically, protein and vegetables, no spiky little carbs!”

Dinner

“similar, protein and vegetables, loads of them. There are studies suggesting that women who eat most of their calories earlier in the day and the fewest later in the day can improve their fertility. Try using a smaller plate for supper”

Vitamins, supplements, and other complementary treatments are popular among women with PCOS.

Mel recommends vitamin D, as studies suggest that a lack of Vitamin D leads to insulin resistance. Supplementing with Vitamin D can help to combat this. Mel also recommends Inofolic (www.inofolic.org.uk), a combination of myo-inositol and folic acid, which helps regulate blood sugar levels, and she has had feedback that it really helps the side-effect of acne.

Coast Science sell a pre-conception supplement specifically designed to help women with polycystic ovarian syndrome.

It is a combination of vitamins, minerals and antioxidants that support overall reproductive health by optimizing blood flow and egg quality, while also improving insulin sensitivity and promoting ovarian function.  Click here to check out what these supplements contain.

In addition to taking supplements and watching your diet, take regular exercise, as it helps increase insulin sensitivity.

Just brisk walking, using the stairs, getting off the bus or the train earlier, and adding a couple of classes a week really can help.

Reach out to other women who also have PCOS, so that you do not feel isolated. There are many stories from women on the soul cysters website that you will be able to relate to.

It has to be said though, that the biggest concern for most women is the fear that they may never conceive. However, I am living proof that women with PCOS can have children. Yes, it was a struggle, but I got there in the end and I am proud to say that I am a mummy of twins.

 

Do you have PCOS? Would you like to share your story? We would love to hear from you. My email is sara@ivfbabble.com

The fantastic Melanie Brown can also be contacted via askanexpert@ivfbabble.com by putting her name in the subject box.

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