Since starting the blog, polycystic ovarian syndrome (PCOS) has been a regular topic request. I knew it was a common condition, but I didn’t realize the emotional and psychological impact of this condition until I asked my friends and instagram followers to tell me about their journeys with PCOS. It seemed pretty obvious to me that I really needed to do this blog post after the conversations I had with women living with PCOS.

Below I’ve tried to explain PCOS as best I can to not only help medical students and junior doctors identify it, but to also help non-medical individuals understand their condition. As this is a medical blog, there is a bit of medical jargon used, but I’ve explained the terms as much as I can in simple language (please feel free to contact me if there is something you do not understand). I also included a few short stories that I was sent in about PCOS, so do read on below. I hope it helps bring more awareness to this condition and I hope that all those PCOS warriors out there know that they are not alone!

So what happened?

A 25 year old girl presented to the gynaecology clinic with her sister complaining of irregular heavy periods that occur once every 6-8 weeks. She expressed annoyance that her usually regular cycles were suddenly haywire for the past year.

On further questioning, the girl stated that she was not under any stress and had no change in her diet. She had no significant past medical history or any family history of menstrual disturbances. She was also not on any medications, but did express that despite vigorous exercise, she was not able to reduce her weight. As the patient was of Asian decent, even though she did exhibit mild hirsutism on her face (upper lip and chin), she thought of it as normal.

At first glance, the girl appeared slightly overweight with acne scarring both cheeks. On examination, the patient had a BMI (body mass index) of 26 (overweight), but all vitals including blood pressure was normal. The patient had achieved secondary sexual characteristics (breast and pubic developement was appropriate). No obvious thyroid enlargement was found, no acanthosis nigricans, nor signs of Acromegaly (coarse hands, tall stature), hyperprolactinoma (nipple discharge) or Cushing’s syndrome (moon face, buffalo hump, striae) was noted.

So what did you do?

As this patient was most likely suffering from PCOS, further tests were requested to confirm the diagnosis as well as to rule out the remaining differential diagnoses.

A diagnosis of PCOS is made based on the Rotterdam criteria – so the patient must have any 2 of the 3 below:

• Polycystic ovaries on ultrasound – 12 or more follicles
• Oligo-ovulation or anovulation (few or no periods)
• Signs/biochemical indication of hyperandrogenism (increased testosterone) such as acne, hirsutism (male pattern body hair)

Polycystic ovaries are common in young women and many are incidentally found. This does not mean that the patient has PCOS, unless the patient fits into the criteria and if asymptomatic, then no management is required.

Investigations

A number of investigations were done in order to confirm diagnosis of PCOS and to monitor for the complications/long-term risks of PCOS.

1. Fasting blood sugar – to ensure baseline glycaemic control as insulin resistance leading to diabetes is a risk in PCOS patients
2. Thyroid function tests – to rule out hypothyroidism which leads to heavy irregular bleeds
3. Lipid profile – to make sure cholesterol is under control
4. Free & Total testosterone
5. Sex hormone-binding globulin – Normal or low in PCOS and is used to calculate the free androgen index (increased in PCOS)
6. Ultrasound scan to demonstrate polycystic ovaries

The patient was found to have a fasting blood sugar of 114 mg/dl (mildly elevated and at risk of developing diabetes). Thyroid tests and the lipid profile was normal. Testosterone and sex hormone binding globulin were expensive and were deemed unnecessary as PCOS can be diagnosed in the presence of clinical hyperandrogenism.

On ultrasound scan abdomen, the patient was found to have polycystic ovaries bilaterally with the multiple follicles lining the periphery of the ovaries (described commonly as a string of pearls).

Management

PCOS is not a curable condition and each symptom must be managed separately.

Due to a number of risks being associated with PCOS, patient education is paramount.  Our patient was informed of the increase risk of obesity, hypercholesterolaemia (increased cholesterol) and insulin resistance (diabetes risk) which together leads to an increased risk of cardiovascular disease.  As she was found to have an impaired fasting blood glucose, diet & exercise advice was given and she was told she needs to be routinely monitored.

Patients with oligomenorrhoea/amenorrhoea are at risk of endometrial hyperplasia and hence endometrial cancer as the endometrial lining of the uterus continues to proliferate and is not shed. It is therefore important to regulate her periods and as the patient expressed that she did not want to get pregnant, she was started on the combined oral contraceptive pill.

The intrauterine system (Mirena) has also been effectively used to regulate the menstrual cycle in patients with PCOS, and it is beneficial as it only acts locally within the uterus without causing the systemic side effects associated with other hormonal forms of contraception. The combined oral contraceptive pills have also been shown to improve acne in some PCOS patients.

For patients finding it difficult to conceive, metformin use has been recommended with or without the use of clomiphene (induces ovulation). In cases resistant to clomiphene, laparoscopic ovarian drilling is the next option in management.

For excessive hair growth, many options such as waxing/epilating/threading exist, however laser hair removal is a more permanent method of hair removal.

Conclusion

PCOS is a multifactorial condition that is commonly diagnosed in young women. If you are experiencing any of the symptoms/signs mentioned above and think you might have PCOS, please seek medical attention. In addition to the physical symptoms experienced, many young women experience a huge psychological impact because of their symptoms including being clinically depressed.

Despite the great advances made in the Sri Lankan medical system, it is sad to say that the psychological aspect of medical illnesses are still largely ignored. PCOS is an all-consuming condition and it is now very clear to me that a support group can do wonders for any woman battling PCOS.

In the next few months I hope to start a support group via the Arka Initiative, in hopes of creating a safe space where women with PCOS can connect and learn from and with each other. If you do suffer from PCOS, please do get in touch with me and I will send you details of the PCOS support group once we start. Below I have compiled a few stories sent to me by some very brave women, expressing the struggles they face because of PCOS.

Additional points –

• In addition to irregular or no period, acne, hirsutism, obesity or difficulty losing weight, patients with PCOS can also experience subfertility, alopecia (hair loss), psychological symptoms (mood swings, depression, anxiety & poor self-esteem) and sleep apnoea.

 

A big thank you to @pinkdog004 for letting me use her beautiful art ❤ 

PCOS Journeys

After I hit pubery, I had to deal with the worst acne ever – I used so many things include “retA”, but my acne never really cleared up. When I entered medical school, with the medical knowledge I already had, I started myself on the oral contraceptive pill thinking that maybe I have hormonal issues. The COCP worked wonders and the acne cleared up completely. However I realised that if I had a hormonal imbalance, I should treat the underlying cause. I then went to an endocrinologist & gynaecologist who ordered investigations and…. voila! I was diagnosed with PCOS and in hindsight, except for the obesity, my symptoms fit. 

It doesn’t affect my life very much today as I have it under control, but I am well aware of the fact that I am prone to weight gain, predisposed to diabetes, and will get crazy acne once I stop taking the pill.

– Jaya, 27 years.  

 

In 2010, I was over 100kgs and the heaviest I had ever been. I started noticing thick facial hair on my chin. It reached a point where I had to wax/thread my chin twice a week and if I didn’t do it twice a week it was very obvious. This greatly affected my self esteem. I used to avoid going out and used to always have my chin down just so it wouldn’t be noticeable. It was only when I went for laser treatment that the doctor asked me to see an endocrinologist. After a scan and a few tests, I was diagnosed with PCOS. The doctor prescribed Diane35 (a contraceptive pill) along with metformin, which helped me in terms of my period as there were times when I used to get my period twice a month. However, besides that it didn’t really do much for me. It was very difficult for me to lose weight too, despite all the diets and physical activities (Zumba, yoga, gym, cross fit) that I tried. The only way I managed to lose weight for a very short period of time was by cutting down on dairy and chicken and increasing my fibre intake. My biggest regret whilst on this journey was being on the pill and metformin for nearly 2 years. I ended up getting anxiety attacks and was mildly depressed whilst on the pill. As I didn’t have high blood sugar and was on metformin (500mg) morning and night, I constantly felt woozy and got frequent migraines. I then decided to do heaps of research online and learnt that only a healthy diet and lifestyle can help manage or reduce the symptoms of PCOS. My symptoms were hirsutism, hair loss and weight gain/difficulty to lose weight whereas some of my friends who have PCOS deal with acne and fertility issues. I recommend laser hair removal for those who have hirsutism. Unless you have irregular periods, stay away from the pill because it sometimes causes weight gain. A gluten free, dairy free diet and active lifestyle will help in general but it is still very very hard to lose weight. So that’s the only way it is curently affecting me! Currently my only concern is for the future and that is that I may suffer from serious health issues.

– Natasha, 29 years.

 

I was diagnosed when I didn’t get my period for over 3 months. I didn’t mind it at all, but my mum panicked. She said I also looked bloated suddenly. I was then diagnosed with PCOS and have now been on the contraceptive pill, Diane 35, for almost 2 yrs. My ovaries are fine now according to my gynaecologist and its’ not an extreme case, however my biggest challenge is the weight gain and the increased appetite. I don’t know how to control my weight gain and it is a constant headache. I know a way to control PCOS is to lose weight, but it is super hard.

Whatever happens, happens. I’m fine with dealing with infertility, but the only thing that worries me is the risk of diabetes! I do not want to have diabetes when I’m 35 years old .. therefore I’m only very concerned about my weight gain. I want to somehow manage that. My doctor said my appetite will skyrocket and it did. He said to control my weight somehow, which I’m trying to do. I will admit I AM LAZY, but the doctor did say that that is a symptom too. It’s been affecting my health in other ways too though. I had a panic attack 2 years ago and was suffering for a long time because of it. Then I realized my diet played a part in it. The healthier I ate, the better I felt! I have much better control over my anxiety now, although I still can’t do some things alone.. but I push through because I’ve realized the only obstacle I have is myself. Currently I’m refusing to let it get me down because if u put your mind to it you can do anything.

– @savindy

 

I was diagnosed because I had infrequent painful periods. It affects me every day just because it’s so much harder to lose weight. I also have to go for a facial threading every week. Additionally, I have had 3 operations to date to remove my cysts. I know it will affect me more in the future if I plan to have another child, but I’m not letting it bother me too much at the moment.

– @amri1982

 

I was diagnosed 6 years ago as I had amenorrhea (no period) for 4 months and this was my only symptom. It affects my life as I constantly worry about when my period is due. I don’t like being on the pill and the gyneacologist said that as long as my period comes every two months its’ all good. This may affect my ability to conceive later on, but that’s not a problem you can’t overcome.

Practicing a healthy diet, exercise and leading a low stress life helps me A LOT. I’ve got none of the other symptoms luckily – no hirsutism or increase in weight. I was diagnosed only because I had amenorrhoea and my ultrasound scan should a pearly lining on my ovaries, consistent with the findings in women with PCOS.

– anonymous

 

At 16, I was diagnosed with ovarian cysts, and one ruptured so I had to have surgery. They found 3 more cysts whilst I was in surgery (including one on my fallopian tube) and these were relatively large and therefore removed.

Move forward to 10 years later and my period suddenly went missing for about 2-3 months. I thought for sure that it was something to do with that. I was someone who up until then would get my periods regularly. I knew that I could not be pregnant, so this was really confusing. After consulting a gynaecologist, I was diagnosed with PCOS. It really does affect me now because I never know when my period will come.

I also started dramatically putting on weight even when I was trying to diet. I always did have a problem with excessive hair growth, but never had severe acne. Unfortunately, I also now get pimples. Cramping can occur at any time of the month and when my period does come it stops and starts. There will be a day or two break in between over about 10 days and it never comes in one stretch. The pattern is very irregular and I bleed much heavier than I used to whilst also passing huge blood clots. I am also immensely moody during this time. It is mentally taxing because it does generate alot of insecurities especially because of the weight gain. I know my fertility will be affected in the future as I have less eggs than the average person, but it also makes me worry that if I am sexually active, there is a small chance that I might be pregnant and not know it because my period is so irregular.

– Jhannique, 28 years