Inconceivable? Amenorrhoea, polycystic ovary syndrome and the question of fertility

I would like to caveat this post with the note that if you are a bit squeamish about over-sharing or uncomfortable with discussions of ‘womeny things’, then this probably isn’t for you.

I debated for a while about tackling this subject as it’s something that is quite close to home. After long deliberation however, I realised that one of the main things that helped me when I had my diagnosis was talking to people in the same boat and feeling less alone.

Firstly, some background: it wasn’t until I had a conversation with one of my oldest friends from home, over the Christmas break last year, that I finally voiced my concerns over the fact that for most of my adult life I’ve not had periods. In my mind I’d made excuses for why this was the case, writing it off as being ‘fine’ for a variety of reasons. In my early twenties I chalked it up to my switch to veganism, later to my weight loss, then to stress and more recently to marathon training. It was only when I finally recognised the issue out loud that I realised how much it had been subconsciously bothering me and that deep down I knew it wasn’t normal.

My friend was immediately concerned and insisted that I visit my GP. She had also had some similar issues and flagged up that missing periods could be a sign of a number of medical conditions.

After our conversation it still took me a couple of month to really face up to the issue and go and see the GP. I was nervous that by visiting the doctor I was admitting that there was an issue, afraid that the GP would confirm that there was something wrong with me and scared to hear that I may not be able to have children – something which I’d been mentally preparing for but was still not ready to hear vindicated.

When I finally saw the doctor she was generous with her time and asked me a number of questions about my general health, diet and exercise patterns. She took my blood pressure and my weight and then sent me for a series of blood tests and ultrasounds.

Amenorrhoea

I learned that a lack of a period, or ‘amenorrhoea’, could indicate one of the following conditions:

  • Hypothalamic amenorrhoea – this is where the part of the brain that regulates the menstrual cycle stops working properly and is thought to be triggered by excessive exercise, excessive weight loss or stress
  • Hyperprolactinaemia – where a person has abnormally high levels of the hormone prolactin in their blood
  • Premature ovarian failure – this is when the ovaries stop working properly in women who have not yet reached the age of natural menopause
  • Polycystic ovary syndrome (PCOS) – a condition that can mean your ovaries don’t regularly release an egg

In fact, secondary amenorrhoea, where your periods start when you hit puberty but then stop again (the condition I have), is thought affect 1 in 25 women at some point in their lives. It is more common in teenage girls and younger women, and can be much more common in certain groups, such as professional athletes, dancers and gymnasts. The commonality of the condition made me feel slightly less anxious – 1 in 25 made me feel less like an outlier and more like I had something that was recognised and treatable.

I was even more relieved when the results from the blood tests came back as normal.

Then there was the ultrasound.

I had two ultrasounds, one external and one internal, the latter of which was more than I had bargained for. If you are going for such an examination I would say to set the whole day aside for it, as while I was at the hospital for under an hour, the anxiety before and the invasiveness of the procedure left me feeling totally emotionally exhausted and afterwards all I wanted to do was curl up in a ball at home.

The examination showed that I had a series of cysts on my right ovary. My mind leapt straight to polycystic ovary syndrome – something which I’d heard a bit about but wasn’t totally clear on the causes, symptoms or treatments for. I immediately jumped to the conclusion that it meant not being able to conceive and to abnormalities with my hormones – two things that terrified me.

Some further research, however, left me clearer about the condition.

Firstly, ovarian cysts don’t automatically equate to polycystic ovaries – something which I hadn’t initially realised. In fact, ovarian cysts are quite common and may occur as part of the normal workings of the ovaries and are generally harmless and can disappear without treatment in a few months.

Secondly, an ovarian cyst will usually only cause symptoms if it ruptures, if it is very large, or if it blocks the blood supply to the ovaries.

In these cases symptoms may include:

  • pelvic pain – this can range from a dull, heavy sensation to a sudden, severe and sharp pain
  • pain during sex
  • difficulty emptying your bowels
  • a frequent need to urinate
  • heavy periods, irregular periods or lighter periods than normal
  • bloating and a swollen tummy
  • feeling very full after only eating a little
  • difficulty getting pregnant

If you have an ovarian cyst and are experiencing any of these symptoms it is important that you visit your GP to get it checked out.

There are two main types of ovarian cyst:

Functional ovarian cysts – these develop as part of the menstrual cycle and are usually harmless and short-lived; these are the most common type of ovarian cyst.

Eggs form inside the ovaries in a structure known as a follicle. The follicle contains fluid that protects the egg as it grows and it bursts when the egg is released. However, sometimes a follicle does not release an egg, or discharge its fluid and shrink after the egg is released. If this happens, the follicle can swell and become a cyst. Functional cysts can also develop when the tissue left behind after an egg has been released fills with fluid. Functional cysts are non-cancerous and are usually harmless, although they can sometimes cause symptoms such as pelvic pain. Most will disappear without treatment in a few months.

Pathological ovarian cysts – cysts that occur due to abnormal cell growth; these are much less common.

Pathological cysts are caused by abnormal cell growth and aren’t related to the menstrual cycle. They can develop before and after the menopause. Pathological cysts develop from either the cells used to create eggs or the cells that cover the outer part of the ovary. They can sometimes burst or grow very large and block the blood supply to the ovaries. Pathological cysts are usually non-cancerous, but a small number are cancerous (malignant) and they are often surgically removed.

Ovarian cysts can sometimes also be caused by an underlying condition, such as endometriosis.

The vast majority of ovarian cysts are non-cancerous. A small number of ovarian cysts are cancerous, however these tend to be more common in women who have been through the menopause. If there is any concern that your cyst could be cancerous you will be sent for a blood test to look for indicators of ovarian cancer. However, even these indicators do not necessarily mean you have cancer as they may also be caused by conditions such as endometriosis, a pelvic infection, fibroids or even being on your period.

Whether an ovarian cyst needs to be treated will depend on a number of factors including its size and appearance, whether you have any symptoms and whether you have been through the menopause. However, in most cases, the cyst often disappears after a few months.

Do ovarian cysts affect fertility?

Ovarian cysts don’t usually prevent you from getting pregnant, although they can sometimes make it harder to conceive. If you need an operation to remove your cysts, your surgeon will aim to preserve your fertility whenever possible. This may mean removing just the cyst and leaving the ovaries intact, or only removing one ovary.

Polycystic ovary syndrome (PCOS)

While it is unknown exactly how many women have PCOS, it is thought to be very common and affects millions of women in the UK. The exact cause is unknown, but the condition often runs in families.

There are three main features of PCOS, which set it apart from ovarian cysts alone. With this condition, ovarian cysts are accompanied by irregular ovulation and high levels of the hormone androgen. You will usually be diagnosed with PCOS if you have at least two of these features.

Symptoms of PCOS usually become apparent during your late teens or early twenties and include:

  • irregular periods or no periods at all
  • difficulty getting pregnant
  • excessive hair growth –usually on the face, chest, or back
  • weight gain
  • thinning hair and hair loss from the head
  • oily skin or acne
  • PCOS is also associated with an increased risk of developing health problems in later life, such as type 2 diabetes and high cholesterol levels

What I find terrifying about the condition is the fact that many of the symptoms attack your ‘femininity’ and identity as a woman. While external indicators which impact on your hair, skin and weight may leave you feeling less feminine, the impact on your fertility and ability to have children feels gut-wrenching. However, not all of these symptoms are always expressed as part of the condition and those which are can be managed and treated.

Treating PCOS

While the condition itself cannot be treated, there are ways of managing the symptoms.

If you have PCOS and you’re overweight, losing weight and eating a healthy, balanced diet can make some symptoms better. Medications are also available to treat symptoms such as excessive hair growth, irregular periods and fertility problems.

If fertility medications are ineffective, a simple surgical procedure called laparoscopic ovarian drilling (LOD) may be recommended. This involves using heat or a laser to destroy the tissue in the ovaries that’s producing androgens, such as testosterone.

The most reassuring thing is that with treatment, most women with PCOS are able to get pregnant.

While I still worry, knowing more about the condition, speaking to a doctor and to other people with similar issues has certainly helped me and I really hope that this post is able to help at least one other person in turn.

 

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