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PCOS Nobody wants to talk about it


If you're a male or really don't want TMI about menstrual cycles, polycystic ovarian syndrome and all that jazz then please stop reading here. Just exit or read one of my other posts.

If you're someone I know personally (friends & family), I would really appreciate if you keep what you're about to read to yourself and just take what you think is beneficial from this post.

I've been debating with myself about whether I should write about this topic as it's a personal one that I don't like people gossiping about. However as I talk to more and more women I see how common it is, especially among south Asian women and how rarely it's spoken about because for some reason it holds shame and stigma.

Recently someone close to me struggling to conceive confided in me about the issue, her symptoms sounded familiar, after telling her about my story she finally went to the doctor and was properly diagnosed in order to get medical help. I wasn't surprised about the fact she didn't know it wasn't her but an actual common medical condition, but I was sad because there needs to be more awareness around it. This encounter encouraged me to finally write about it in this lengthy but hopefully informative and helpful post.

What is PCOS?

Polycystic Ovarian Syndrome, the most common endocrine disorder and one of the leading reasons for fertility issues, it can affect as many as 15-20% of women depending on the criteria used to diagnose it. It's caused by a combination of genetic and environmental factors. People with PCOS have high androgen levels and an imbalance of hormones, which affects many parts of the body including the pituitary gland in the brain, the pancreas and the thyroid.

Common symptoms include:
  • Irregular/no periods
  • Heavy menstrual bleeding
  • Being overweight
  • Spotting between periods
  • Excess body and facial hair
  • Acne
  • Diabetes
  • Thyroid issues
To read more about PCOS, symptoms, diagnosis & treatment please check out https://www.nhs.uk/conditions/polycystic-ovary-syndrome-pcos/

My diagnosis

I was diagnosed with polycystic ovaries when I was 13 years old after going to the GP due to irregular menstrual cycles. Since 13 I have never had a regular cycle that follows any pattern. Sometimes I miss 2 months, sometimes 4 or even up to 6 months! My GP sent me to the gynaecologist who performed an ultrasound and told me I had cysts on my ovaries.

I remember the doctor sitting me down and telling me I have polycystic ovaries but I don't have the 'syndrome' part of PCOS because I wasn't the typical PCOS sufferer and only had 1 symptom. Alhamdulillah I never suffered from acne, excess hair and I was actually underweight or in the 'normal' BMI most of my life. I was told I may find it difficult to conceive in the future and was offered the contraceptive pill to help regulate my cycles. At age 13 it all went way over my head and I didn't want to take the pill because the symptoms weren't really that bad. As I've gotten older I don't like taking medication because of undesired side effects and after reading about the contraceptive pill I'm more against taking it because of the side effects like causing depression. I was worried the pill could trigger the other symptoms I wasn't experiencing and the doctor couldn't guarantee it wouldn't so I left it and went on my way.

A couple times over the years I had very heavy periods which were really painful, not your average period pains and heavy days, but it was like I couldn't carry on with my day-to-day life (if you know, you know). I went to the GP the first time I had that experience and was given Tranexamic Acid to lessen the bleeding and clots as well as Mefanamic Acid to help with the pain as regular painkillers were not helpful at all.

Mental health & weight 

Throughout my life I met other PCOS sufferers and heard about their experiences, some were female relatives, others were friends or acquaintances and even some total strangers online. One thing I found out was that there are a lot of medical issues we had in common. After feeling very abnormal and sometimes like I was 'broken' I finally felt like I wasn't alone as so many women also went through the exact same experiences.

When my period finally came after a gap of 4 or 6 months it was the worst thing in the world. There would be days at work where I was so worried about leaks and in so much pain that I would be sweating. I felt so self-conscious during those periods that I couldn't do my job properly, I'd call in sick so often that I was referred to occupational health. I found the whole thing really embarrassing and kept it all to myself.

Another symptom I experienced was always feeling tired. I put it down to poor diet or possible low iron levels but blood tests revealed I had borderline hypothyroidism (low thyroid function) which causes tiredness. This was easily resolved with thyroid medication until levels because normal again.

When I got married the issues affected my mental health a great deal. I often wish I could be a normal woman, I sometimes feel like I'm not woman enough and that I'm lacking something. At the start it really affected my confidence and self esteem. Sometimes I feel so low because of all the problems caused by PCOS but I don't realise why I'm feeling low or depressed.

One of the symptoms of PCOS is finding it difficult to lose weight. I had never had a problem with weight because most of my life I was skinny and used to even get body shamed and teased for being so skinny. I remember wishing I could put on weight so that I could be normal.

However, when I got married I put on weight quite quickly. This was partly due to my in laws feeding me so much and party because hubby and I ate out alot. I felt like my metabolism really slowed down and found that I couldn't lose weight as quickly as I had done before.

People commented one my weight and I tended to just laugh it off, but what people don't realise when they judge you for your weight is that someone may not have put on weight because they're just fat and lazy, but there may be underlying conditions like PCOS. Comments about weight make an already self-conscious person even worse.

Fertility

If I'm honest conceiving naturally was an issue, but I didn't really think about it until 2 and half years into the marriage when I felt ready to look into it. If you read my 'When are you having a baby?' blog post, you may have sense of anger and frustration. This is the reason why people talking about my fertility upset me so much because it was something I was not in control of per say.

Alhamduillah hubby and I don't have all this 'shame' and 'embarrassment' about women's issues, you may disagree with me on this point but I felt like I needed to be open and honest with him and teach him about women's health in order for him to understand what I go through, so that he can fully support me and not expect so much from me. This is a huge taboo in the Asian culture as with a lot of other cultures but it's a taboo that needs to be broken in order for men to fully understand and appreciate what women deal with rather than just think women are weak or unreasonable.

There are many fertility options available but because one of the main causes of infertility is not ovulating every month reducing the chances of conceiving without intervention. 'Ovulation Induction' is one of the first routes taken. This involves going through a whole heap tests and scans and then taking a medication called 'Clomid' to help you ovulate. Through my research I found out that Metformin is another medication given during ovulation induction. I was also on thyroid medication as an imbalance in thyroid function is a risk factor for miscarriage. 

To go through ovulation induction or any treatment you need to speak to your GP and be referred to a fertility clinic. Every case is different and they are the one's to tailor make a plan to suit your specific needs.

Natural remedies

There are many natural ways to deal with PCOS that include diet and lifestyle changes. People that I personally know of achieved relief of symptoms by eating healthy and losing weight. They even conceived naturally and unexpectedly just by making healthy choices.

Losing weight makes a huge difference to symptom relief and is usually the first step that's recommended by doctors. As I said earlier this is easier said than done, but it really needs to be a lifestyle change for it to be effective and you will need support to help you achieve your goals.

There are other natural remedies out there like hijama, eating certain foods, acupuncture, but I don't have any personal experiences with these, a simple Google search should get you started.

Spirituality

PCOS affects every part of your life including Islamically. Because I don't have and have never had proper pattern or cycle things like fasting and prayer become quite complicated. I've read many books and articles on it and nothing has made the issue any clearer. Scholars say there are two types of bleeding haydh (menstrual bleeding) and istihaadah (other bleeding). The topic is quite complex when you don't have a regular cycle so for more info read here. In short the general ruling is a period lasts no less than 3 days and no more than 10. Anything outside that is considered istihaada and you can fast pray etc as normal. There are times where I would have continuous spotting or bleeding for 2 months or more or stopping and starting, this is really frustrating when trying to work out if you should start praying again or how many days fasting you should miss and make up in the future.

One time I went for Umrah after my period had ended, on the plane we had just past the red sea and it was announced that we should enter our ihram, my period started. I couldn't perform the full umrah with the rest of my family. The ruling is that you can do all the acts of umrah except tawaaf, instead I waited and took Norethisterone and then performed Umrah on my own.

In 2016 I went again with hubby and my family. I took Norethisterone as instructed and was able to perform Umrah. The second week we went to Madinah and my period started. It was the worst period ever, the pain was worse than contractions during labour, and it was really heavy. Both times I felt awful, like there was something wrong with me, added with the fact that I needed to make up n excuse to my dad and brothers.

Whenever I express my feelings of inadequacy hubby reminds me that this is not a punishment, it is from Allah and that although I can't do certain acts of worship, the things I can do weigh heavily and count for just as much.

Advice for those with PCOS:
  • Talk to your family about it. Be open with your spouse and speak about what you're going through. A support system makes the world of difference, when people know what you're going through they can help you instead of judge you.
  • Reach out to others with PCOS. This helps you to not feel alone as well as giving you people to share your experiences with and get advice or tips on what works for them.
  •  Go to your GP. Find a good doctor that you trust, who can advise you about a holistic approach to your health
  • Make positive diet and lifestyle changes that are sustainable
  • Hang on in there and remember you're not alone.
 Advice for everyone else:
  •  Don't judge people about the way they look. Teach your children the same. Don't make fun of girls that are overweight or have excess body & facial hair. You don't know what the person is going through and how much of an impact your comments have on them.
  • Stop asking women when they're going to have a baby. Fertility is a sensitive topic for women suffering with PCOS and other fertility issues. Continuously asking them will not make them have a baby any faster but will drive them deeper into depression.
  • Stop body shaming and telling women they need to lose weight. Even if you think you're being helpful you're not. Chances are those who are overweight are battling an illness and disorders that you know nothing about.
Summary 

PCOS is a disorder that affects all parts of the day to day lives for those who suffer from it. Those who suffer from it often experience mental health problems like depression. Problems with fertility are also common but there is help out there.

I hope this post has been of some benefit to you and given you some insight on what life is like for someone who lives with PCOS. Do share this with people you think it might help and comment below with your experiences.

Oh and having a baby last year was also one of the reasons why I was away from blogging for so long. 

More mama & baby posts coming soon! 

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