My PCOS Journey | Episode 16

In this episode Joanne shares her story about being diagnosed with PCOS, polycystic ovarian syndrome and her journey so far. She shares tips on how to manage and reduce the symptoms of this common and debilitating endocrine condition. 

PCOS (Polycystic Ovarian Syndrome) is a hormonal disorder that affects a woman's menstrual cycle, fertility, and other aspects of health. It is caused by an imbalance of hormones in the body, which can lead to enlarged ovaries with cysts and irregular menstrual cycles. While there is no cure for PCOS, there are treatments available to help manage the symptoms. These may include lifestyle changes, such as exercise and diet, as well as medications. If you think you may have PCOS, it is best to speak to your doctor for a diagnosis and to discuss available treatment options.

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*This podcast does not provide medical advice, diagnosis or treatment and its contents are intended for informational purposes only.

Transcript

Welcome to Episode Sixteen of our Full Spectrum Wellness Podcast. I'm so excited to be back here with you for our sixteenth episode.

In just under 4 weeks’ time I will be 52 years old. I’ve been reflecting on my life so far as well as dealing with a few health issues related to aging as well as a recurrence of some symptoms related to PCOS, a condition I was diagnosed with 30 years ago. This is my PCOS journey, and my hope is that by sharing it other women who are struggling with it and with being diagnosed are inspired to take control of their health and well-being.

Polycystic ovary syndrome, also known as polycystic ovarian syndrome and PCOS for short is a complex endocrine condition that affects a woman's hormone levels, regardless of race and ethnicity. According to NICE the national Institute for Health and Care Excellence PCOS is one of the most common endocrine disorders affecting women of reproductive age. It’s said to be a leading cause of infertility and can lead to all sorts of symptoms and risk factors. Irregular periods, no periods, periods lasting for days on end, heavier periods, weight gain, fatigue  excess facial and body hair, severe acne, dark patches on the skin, male-pattern baldness, pelvic pain, body pain, in particular, pain in the neck, back, legs and joints,  bloating or swelling in the lower abdomen, constipation, infertility issues, mood swings, depression, anxiety, sugar cravings, low vitamin D levels, sleep problems, excessive daytime sleepiness, bladder issues including urgency, stress incontinence and needing to urinate frequently at night, psychological disorders, poor executive functioning and memory, headaches and migraines are all part and parcel of dealing with PCOS and we are at higher risk of entering menopause early and developing Diabetes, Heart disease, High blood pressure, High LDL (“bad”) cholesterol, Irritable Bowl Syndrome, Non-alcoholic fatty liver disease, Sleep apnea, Stroke and a 2015 study found that women with PCOS are more likely to be diagnosed with endometriosis and Endometrial cancer. If you do get pregnant you are at higher risk of Pregnancy complications, such as pre-eclampsia, miscarriage, pregnancy-induced high blood pressure, premature delivery and gestational diabetes.

It’s thought that PCOS affects about 1 in every 10 women and those assigned female at birth here in the UK, which roughly translates into 3.5 million women and as many as 5 million women in the US. More than half of these women do not have any symptoms. The exact causes aren’t really known, but androgen levels, male hormones that females also have that are higher than normal have an important part to play. Excess weight and family history and insulin resistance can also contribute. It’s thought that PCOS has a genetic component. Research shows that women who have a mother or sister with PCOS are more likely to develop PCOS than someone whose relatives do not have the condition. 

Sugar is the body’s primary source of energy, and it is regulated in the body by insulin, which is secreted by the pancreas. Insulin resistance means an individual is unable to use insulin efficiently which causes the pancreas to go into overdrive secreting additional insulin to meet the body’s glucose needs.

Excess insulin is thought to affect a woman’s ability to ovulate because of its effect on androgen production. Research has shown that women with PCOS have low-grade inflammation that stimulates polycystic ovaries to produce androgens.

It’s very common for women to find out that they have PCOS when they experience problems getting pregnant, but in reality, it often begins soon after the first menstrual period, as young as age 11 or 12. It can also develop in the 20s or 30s. To help diagnose whether you have PCOS, doctors check that you have at least 2 of these 3 symptoms:

1. Irregular periods or no periods, caused from lack of ovulation.
2. Higher than normal levels of male hormones that may result in excess hair on the face and body, acne, or thinning scalp hair.
3. Enlarged ovaries and multiple small cysts on or within the ovaries.

Just having ovarian cysts isn’t enough for a diagnosis. Lots of women without PCOS have cysts on or within their ovaries and lots of women with PCOS don’t have cysts. Cysts on the ovaries without any other symptoms is known as Polycystic Ovaries, very common, affecting around 1 in 5 whereas cysts on or within the ovaries or lack of them alongside all the other symptoms is known as polycystic ovarian syndrome. 

As the charity Verity states on its website “It manifests differently in each person and can be incredibly devastating to an individual’s self-esteem and quality of life. There is no known cause or cure.”

I can remember the first time I experienced one of my PCOS symptoms as clear as if it was yesterday. I was in my teens and sat in a maths lesson at high school. The teacher had written a formula on the board and all of a sudden, the letters and numbers began to look strange. You know when you are watching something on the news, and they want to block something out they pixelate it? Well, it was like that, I felt faint and then vomited. I remember coming round in the school nurse’s office. My mum came to pick me up and I went to bed, pulled the duvet over my head and tried to sleep. The slightest noise or flicker of light would cause an explosion in my head, the pain was unbearable. Many a time in my 51 ish years since I’ve sat on the toilet floor holding my head in my hands just wanting it all to stop.

I had started my periods at the age of 13 and they were never regular but as I got older, the migraine attacks became more frequent and my periods even more irregular. By my early 20’s I would go for a year without a period then suddenly one would come out of nowhere and last for days, even weeks. My longest was 60 days and the doctors had to give me tablets to stop the bleeding. My symptoms were completely debilitating. Some days I couldn’t get out of bed let alone get out of the house and go to work. At the time my mum worked as a nurse at Royal Preston Hospital, I’m a Lancashire lass by birth, Manchester is my adopted home. I had seen numerous GP’s, probably a dozen, a mix of male and female who all said the same thing, “99% of women have normal periods and 1% just don’t. Once you have had a baby they will probably go back to normal”. Well one my periods had never been normal and two that didn’t explain all the other weird symptoms I was experiencing, excruciating pelvic pain, excessive hair growth, severe acne on my face, especially bad around my mouth and on my chin. In fact, I had been bullied all through my school days for these two symptoms. Years later the irony of what they had said to me was not lost, I didn’t ovulate at all so getting pregnant and having a baby was a never going to happen naturally. And that’s another thing I had to deal with over the years from friends, family members even strangers, the question of children, the most popular of questions being “When are you having a baby”!

My mum was at the end of her tether just as much as I was, frustrated by the lack of empathy from the medical profession. Finally, after much badgering I was referred to Bury General, I was living in Radcliffe in Bury at the time for a scan on my pituitary gland as they suspected a pituitary gland tumor may be causing my symptoms. That came back clear so back to the drawing board, more GP visits, more frustration.

One day whilst on shift my mum was chatting the one of the consultants, Shaun. She mentioned all the trouble we had been having and Shaun asked her what my symptoms were. When she began describing them, he said “That sounds like PCOS, my mate David Polson at Salford Royal has written papers on it, try to get a referral to him”. It was a huge relief, finally a possible explanation for my symptoms, I wasn’t ‘imagining them, I wasn’t going crazy, I wasn’t dying’. Then came the battle to get the referral to David, one of many throughout the nearly 30 years he took care of me. Because I lived in Radcliffe and not Salford at first my GP refused to refer me but eventually, he relented, and I got my referral. That first appointment with David was surreal. I walked in, had a little chat about my symptoms and he said the words, “I have no doubt you have Polycystic Ovarian Syndrome but I’m going to take bloods and order an ultrasound, more for your benefit so you can see what’s going on and be informed.

The results of the ultrasound showed an abnormal thickness of the lining of the uterus, a common occurrence in PCOS and cysts within my ovaries that looked like a string of pearls, again a classic sign of PCOS. My blood test results confirmed that all the markers for PCOS were there, raised Prolactin and Testosterone, Oestrogen, and Lutenizing Hormone levels and a low Follicle Stimulating Hormone level. I asked him why these markers hadn’t been picked up in previous blood tests of which I had had many and his reply was simply because they didn’t test them, they tested baseline hormone levels not the specific hormone markers for PCOS.

He gave me a leaflet about PCOS but explained everything about it and went through my treatment options which were limited to the contraceptive pill or HRT. I even tried Metformin for a while which is a diabetic medication that had been found to help ‘kick start’ ovulation and bring balance to the reproductive system. For the next nearly 30 years David took care of me, with a few bumps along the way, mainly problems getting rereferred to him when I needed to be as he would often sign me off because I was doing so well. 

In the latter years before he retired, I was seeing him every 10 weeks for Prostrap injections, supported by HRT which mimic menopause, effectively switching the ovaries off. In that last 30 years he and natural therapies such as reflexology, reiki and essential oils, herbal supplements, low GI diet and intermittent fasting kept me pretty much symptom free, no periods, no pelvic pain, no acne, massively reduced bouts anxiety and depression just the excessive hair growth, mood swings and migraines to deal with but much less frequently. 

Now as I approach 52, I am experiencing new and old symptoms and a change in my PCOS and with no David, but his advice is ringing in my ears and still inspires me to this day. He always used to say to me, “Jo you know your body better than any doctor, you know what feels right and what feels wrong, you also know your condition inside out too!” 

The lessons my PCOS journey has taught me are give your mind, body and spirit what they need, lots of TLC, the right nutrition including lots of fresh fruit and vegetables, vitamins and minerals, love, enough sleep, exercise, less stress, limiting the amount of fatty and sugary foods and drinks you consume. Taking care of yourself can improve PCOS symptoms, especially healthy eating and being active. Following a low GI diet is particularly helpful for many sufferers. Glycaemic Index (GI) is a ranking system, showing how quickly your blood sugar rises after eating different carbohydrates. Low GI diets, eating foods that cause your blood sugar levels to rise slowly, can help reduce the symptoms of PCOS. This is because eating low GI foods can improve insulin levels. Insulin is a hormone which helps the body use energy from food, and as I mentioned earlier lots of women with PCOS are resistant to the effects of insulin and therefore have more insulin in their blood to compensate. Insulin also increases testosterone levels which can upset the balance of hormones in the body and lead to acne, excess hair and irregular periods. You may find that swapping some high GI foods for low GI foods helpful, even if you don’t need to lose weight, as it has been shown that low GI diets improve the body’s ability to respond to insulin as well as regulate periods in women with PCOS. 

And a massive lesson, stand your ground with the medical profession, yes, they have medical degrees and GP’s have a general knowledge of lots of pathology but as David said you know what feels right and what feels wrong too. Being informed and researching I have found to be essential and not being ‘fobbed off’ too. I amazes me that clients I am working with today are still experiencing issues getting referred and diagnosed with many doctors still of the attitude that it’s just ‘womens problems’ but as the risk factors prove PCOS can have serious consequences for your health so its imperative that you get the right diagnosis and subsequent treatment.

So if you or someone you know are struggling there is help available, there are options but you need to be informed, do research, stand up for yourself and ask for help. I’m here ready to listen and help where I can.