#LafiyaListens: Living with Polycystic Ovarian Syndrome (PCOS)


What is Polycystic Ovary Syndrome (PCOS)? Whenever I am asked this question I stall for a minute. To many people, Polycystic Ovarian Syndrome doesn't mean anything. They've never heard of it and might never even witness any of the symptoms. Yet it is a condition that affects about 1 in 10 women in the UK.

The main characteristic of PCOS is an excess number of cysts in the ovaries. Women normally develop follicles in the ovaries which contain eggs to be released at the appropriate time during her menstrual cycle. Cysts, however, are follicles that have not developed properly due to hormone imbalances which are also related to insulin resistance. Due to the complexity of PCOS it can have adverse effects on a woman.

Some of the symptoms include excessive bodily and facial hair growth (hirsutism), weight gain and in extreme cases - reduced fertility. PCOS can also contribute to the development of other conditions such as diabetes, due to insulin related problems; fibroids; or even cancers of the reproductive system due to hormone imbalances. Ironically, while PCOS can be an absolutely horrible thing to have to live with, some women that have the condition experience no symptoms at all.

Unfortunately, for me, I happen to be one of those women who suffer quite severely with PCOS. I have always had the symptoms as my period started with very heavy bleeds that were irregular and I would shed my uterine lining in lumps as big as a small egg. I didn't really think much of it though because sex education didn't address menstrual anomalies and my mother insisted she had the same issue growing up and that it would get better. Periods aren't exactly something young girls discussed openly when I was young and so I never compared notes with friends to notice I was that different.

My concerns first started when my periods seemed to have been regulating (I was having a period every month even though it wasn't necessarily clockwork) but then it went totally wayward again. My facial hair growth, which was something I noticed from age 16, was also getting worse and I decided to go speak to a doctor about it because it was distressing me. After a blood test and ultrasound scan, a diagnosis was made.

My main issue with PCOS is the hormone imbalance. While I do get cysts which are painful they usually go away on their own. The problem is that hormonal imbalances affect my moods severely and I also develop fibroids which are non-cancerous tumours in or on the uterus. The fibroids in turn make my bleeding very heavy. The longest period I have had lasted 62 days and I never have one shorter than a week. Because my hormones are unpredictable, there is no way of determining when these heavy periods will occur. There are about 40 days between each period and occasional spotting in between.

The bodily hair growth has also worsened over the years.

I am able to function reasonably well at home. I cook and clean after myself like any other person would. I do my own grocery shopping which often includes heavy items.

It only becomes a problem when I have been bleeding for extensive amounts of time as I am also a sickle cell carrier. This means that some of my red blood cells are deformed and don't carry haemoglobin very well and I easily get anaemic. Losing large amounts of blood through my period bleeds does not help.

I think the greatest struggle for me is the mental aspect of PCOS. While the condition is physical, hormonal conditions can have an adverse effect on mental health. I often suffer from mood swings which makes socialising very difficult. The transition from being a social butterfly as a teen to spending most of my time in isolation, because I am either in pain or suffering from Premenstrual Dysphoric Disorder (PMDD) caused by fluctuating hormones, has been hard at times.

As one can imagine, PCOS also affects my work life as I often have to take time off. Recently I discussed on my social media how employers are not the greatest at accommodating conditions like this or even creating an environment where it can be discussed. A few weeks ago I passed out at work due to being on strong painkillers and not being able to eat - a couple of days later I had to be back at work.

I am not sure if I am at that stage yet. I still get worried every time I go through several months without a period because it is indication my hormones are imbalanced and I could possible have another lengthy period.

I dread hospital stays, blood transfusions (in emergencies when I've lost too much blood) and biopsies to make sure I haven't developed any cancers. Arguing with doctors about the right course of action is annoying and draining, especially when I've been pumped full or morphine to control pain.

One of the hardest things to accept is the issue of fertility. Even though I have not been trying, the fact that I don't ovulate regularly has me thinking about my fertility a lot.

All in all, I try to do my best to live as healthily as I possibly can despite PCOS. Researching the condition in depth definitely helped. Whilst some of the facts can be quite scary, there's less guess work involved when I experience certain symptoms. I have been able to reach a point where, if I feel continuously nauseous and my period is delaying, I know that I need to check my recent lifestyle choices and try to prepare for what I call a 'PCOS Crisis'.

I've also discovered the importance of keeping track of symptoms and cycle information as this is crucial when liaising with medical professionals. A gap in information makes it becomes very easy to be dismissed.

Growing up it was very hard to speak about my symptoms because I myself thought that I should be able to cope with my symptoms, I thought it was normal. Although, I have had heavy periods ever since my first one, I didn't have painful periods until I was about 17.

By the time I was diagnosed with PCOS at 20 my family was used to my extremely painful episodes. The diagnoses only brought more clarity.

Yet still, I have often had to change doctors due to relocating and sometimes it is difficult to explain to doctors the extent of my suffering. I have had doctors tell me I shouldn't be taking so much time off work although I had been bleeding for 4weeks and felt too weak. In 2015 I had a fibroid removed only because it had caused me to bleed so much that I passed out in public and my Haemoglobin levels were so low I needed a transfusion. I have since developed another fibroid but nothing is being done until they're sure that it is causing enough harm to make it worth taking out.

I understand where doctors are coming from as I am constantly doing more research, however, every woman experiences PCOS differently and I don't think medical professionals have the resources or empathy to deal with that sometimes. I am currently desperate to be referred for a laparoscopy to check for endometriosis which would better explain some of my painful episodes where I haven't had any cysts, yet my requests are currently falling on deaf ears.

PCOS is most commonly treated with simple hormonal contraception such as the combined pill. I was prescribed these as a young teen to ease the heavy bleeds but my mother was against this and I stopped. I later (after my diagnosis and many attempts with different brands) discovered that my body develops severe side effects when taking the combined or progesterone only pill (also known as mini pill). The last time I tried the mini pill, I had several hemiplegic migraines suggesting that the treatment could cause me to have a stroke. I also tried the implant when I was 19 (also pre diagnosis) to help with heavy bleeds but it made me bleed even more excessively.

Doctors have suggested the Mirena Coil. This is an IUS (Interuterine System) which is placed in the uterus and releases progesterone into the womb. While it is seen as a great option for both the treatment of heavy bleeds and painful period as well as contraception, I have decided against the use of the Mirena.

I have extensively read reviews on the coil and discovered that the side effects have left many women more miserable than they were before. Women complained of weight gain and severe depression amongst other symptoms. As a person who is already struggling with weight and has been advised that the best cause of action to reduce PCOS symptoms is to lose weight, the Mirena seems counter productive. Depression is also a great problem for me which I am not willing to take the risk of worsening.

At the moment, my main focus is on losing weight and hoping for the best. Right now, I have not seen much improvement despite weight loss but I am hopeful. PCOS is not an easy condition to live with for me and many women out there but hope is one of the few luxuries we can afford ourselves.

If you have any further questions or concerns, we'll be happy to help here.

To learn more about AJ Manu and her experiences, you can go to her blog: www.ruthtp.wordpress.com

or connect with her on Twitter: @okornore

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