Research Outcome: The Lived Experience of PCOS

In July 2018, Treasa McCarthy contacte Verity about conducting a study on ‘The Lived Experience of PCOS’, below is a summary of what she found.

PCOS may affect how women experience their intimate relationships, particularly as many women experience difficulties with sexual intimacy, mood and self-esteem. This study interviewed seven UK-based young women with PCOS to explore their experience of being in an intimate relationship. 

The women interviewed felt they were not ‘proper’ women due to their appearance and fertility difficulties and felt ashamed, guilty and undeserving of their partners. For some women, power imbalances in their relationships developed, where their relationship enduring felt dependant on them either becoming ‘proper’ women or their partners accepting their ‘shortcomings’; this evoked feelings of anxiety, frustration and sadness. Most partners assured them that they would not end the relationship, however this often failed to change how they felt. 

To try to become ‘proper’ women, they battled against their bodies.  Parenthood battles were largely shared with partners, and sometimes strengthened their relationships, however the battles to conform with beauty norms were usually hidden. Sexual intimacy was difficult, as they struggled to be open with partners, or to believe they found them attractive. Some partners tried to address their insecurities, however assurances often failed to reassure. For others, partners appeared to reinforce their distress through insensitivity or lack of understanding. The prolonged parenthood battles could also erode sexual intimacy, as enjoyment was incompatible with failures to conceive. Taken together, these battles made sex a stressful, pressured activity. 

Overall, this study highlights the importance of universal care for women with PCOS that includes psychological and peer support. 

 

  • Lotta Stocker

    In my experience, you can’t beat PCOS, so it comes down to how badly it will treat you and what you can try to do to keep it at bay. In other words, how much inner strength can you find so that you can reduce the symptoms of PCOS so it doesn’t end up ruining your life. Personally, I have found this very hard and to be a bit like a game of snakes and ladders, as life in general also deals us bad hands from time to time.

    Gong back, I do recall having an appointment with a Professor at St Thomas Hospital London in 1997, I was age 31 and mother of twins toddlers and I did not understand why my weight would not drop. I was in his consulting room on an exercise bike, all wired up, biking for ten minutes but my heart beat didn’t’ move up from 50bpm. The Professor said to me: “We see this quite a lot with PCOS” What he meant was, women with PCOS don’t get the benefit from all the exercise/movement like normal people. He further explained to me, that one theory about PCOS is that PCOS ensures that the race of humans doesn’t die out in case of famine. He said PCOS goes so deep and it can be so many different things. This really resonated with me! When normal women loose a lot of weight they stop having periods so they can’t get pregnant. But with PCOS in a famine your body does everything perfectly and getting pregnant is no longer a problem. What I took from my meeting at St Thomas was that PCOS is a syndrome where things work well when food is in short supply and perhaps not in regular supply and where a lot of energy is needed every single day to hunt for food. PCOS is everything that the 21st century is not!

    I think it is wonderful that we can finally have a voice and share our struggles with PCOS. BUT I also think much of the PCOS dialogue online is about how bad it is and very little is about what is actually working for some women. So I will share what has worked for me and share how things have sometimes gone wrong.

    I have waxed my body hair for as long as I can remember – made me feel more normal and certainly lessened the hair growth over the decades. I had bad acne on my back and some on my face – Dianette (contraceptive pill) helped during three years in my mid 20s and the acne never returned. I also think it helped keeping the weight stable below 11 Stone (154lbs). I had IVF age 29 and I gave birth to twins in 1996.

    Diet:

    I believe hunger for me is actually quite rare, but CRAVINGS are much more difficult to control – I would say virtually impossible!!

    In my case, CARBS wake up these out of control cravings!! So for breakfast, I have coffee with milk and then I don’t eat until around 11am – 50g of raw nuts and seed, plain kefir, berries and 1/3 apple. IF I have TOAST with MARMALADE instead; my eating is out of control for the whole day. I can’t even have a sprinkling of raw oats so, I am forced to eat in a way that does NOT wake up these horrific cravings.

    Lunch is whenever I feel hungry, which can be around 3pm and I generally stick to avocado, tomatoes, sheep’s milk cheese and whatever leftover veg I have in the fridge – lunch is a kind of “top up meal”. The biggest change for me has been to have dinner early around 6pm rather than 8pm. We (apparently) need some wholegrain in our diet, and this is the first time in the day when I have a small fist size of brown rice, quinoa, pasta and sometime beans or sweet potatoes instead. My dinner plate is full of vegetables and also I have around 4oz of lean meat or fish – it is a big size dinner plate but rarely more than 700 calories. After dinner I always walk the dog to ensure the insulin load doesn’t go through the roof. Ice cream after dinner is really tricky with PCOS as it requires such a huge load of insulin and it is the lingering insulin that makes us put on weight – I really struggle with ice cream. It is my understanding that overeating also causes a huge load of insulin to be released and we put on more body fat even if this is the only meal we have in a day. Still, I have found I eat less calories if the window of eating is around 8 hours instead of 12 hours and I too have read what Jason Fung says on the topic – intermittent fasting works for me. In the past I have also been successful eating a low carb – high protein diet. But my bloods just look a lot better eating a lot more vegetables rather than loads of meat and saturated fat.

    Exercise/moving:

    Exercise is important for me, but more so, is moving in general. I, ALWAYS park the furthest away, take the stairs, squat when emptying the dishwasher, walk and walk some more…. meet friends for a walk not a chat on the sofa or cafe etc etc. At the end of the day it all adds up to calories burnt and this is confirmed by my Apple Watch that tracks everything daily but also monthly, quarterly and yearly – I don’t care about competing, I just keep track of active calories over a period of time. I do go to the gym about three times a week and for me (age 54) with a dodgy foot, I now find elliptical machines working at close to 90% of max heart beat keeps my body fat somewhat under control. (I miss playing racket sports.) I do some weights for the arms a couple of days a week at home.

    Emotional wellbeing:

    The brain releases “happy” neurotransmitters when we are feeling good, these are also released if people take cocaine etc – they are apparently the same powerful feel-good transmitters. I don’t take drugs, but I try to influence these transmitters by listening to uplifting music instead of talking radio, watch comedy instead of films with torture or sadness. I hug my husband and dog. Somehow, it feels like I am less stressed when I focus on the positives and try to consciously smile. I incorporate a lot of wellness breathing, yoga and try to be kind to myself. A treat for me is a manicure or a massage not a cafe visit or jelly beans in the car. I have had to remove all my innate reward thinking relating to food.

    When things go wrong:

    Things DO go wrong!!! I broke my right foot in five places and in the space of three months I put on 20lbs of body fat and lost 6lbs of muscles. I couldn’t walk but I did stick to eating 1,400 calories/day. This made me realize that with PCOS I have to move a lot and very frequently. It took 18 months to loose this weight gain and return the muscle tone, nothing is quick with PCOS for me. Emotions can have a hugely negative impact too – my Mum died and my son was gravely ill during the same month – 14lbs heavier 4 weeks later – I didn’t really comfort eat… I certainly cried a lot – PCOS is really strange!

    In 2018, I was diagnosed with a thyroid autoimmune disease called Graves Disease – I had an overactive thyroid and it had to be surgically removed as I had also ended up with Thyroid Eye Disease. When you have no thyroid you are hypo so you become more insulin resistant which essentially makes you put on weight. So I had one more struggle not dissimilar to PCOS. Then I hit menopause last year… another story ha ha But rather than wait for the three battles to become unsurmountable I started taking Extended Release (ER) Metformin. In the past, I had never been able to take the normal Metformin (IR) but (ER) is better tolerated from a gastric point of view and I love it. It has given me a little help and is more forgiving if I go out for dinner or have a piece of cake etc. I am still very health conscious, but I would say that it has removed some of the pressure. It has also normalized my cholesterol and reduced my CRP from 1 to 0.35. Apparently Metformin also rewards you more when exercising if you have PCOS.

    For about 25 years I have tried to take a holistic approach to my PCOS. I have to be disciplined as explained above. I also know that when things go wrong it is extremely hard work to get back to normal. But what I do works for me, as I can stick to it pretty much every single day – year in year out and not just for a month. Essentially, PCOS is chronic and you never beat it, but I have found an acceptable way to manage my life. For me it’s the whole holistic package – still, things go wrong from time to time:))

    I have an amazing Endocrinologist; Dr Mark Vanderpump. In my opinion, he also has the best online blog about pretty much every endocrine condition you can think of. This if the website: https://www.markvanderpump.co.uk If you click on “blog” and scroll down you come to a huge number of tags and you can read what relates to you. I have found both Dr Vanderpump and his amazing website very helpful!

    Best of luck to everybody,

    Lotta