POLYCYSTIC OVARIAN SYNDROME (PCOS)
Polycystic Ovarian Syndrome, or PCOS, is a condition which occurs in five to ten percent of women of reproductive age. It is associated with a hormonal imbalance that can cause a variety of symptoms, including but not limited to:
Period problems – ranging from no periods at all to irregular, heavy or painful periods. May be linked to difficulty in becoming pregnant due to irregular ovulation (egg release).
Excessive hair growth on the face and body (hirsutism) and/or thinning of the hair on the head (alopecia).
Dark skin patches (called acanthosis nigricans) on the back of the neck or under the armpits or in skin creases.
Problems with easy weight gain and increased upper or abdominal body fat. However, not all women with PCOS have weight problems.
What are the long-term risks?
Studies show that women with PCOS may have an increased risk of:
Diabetes – either pregnancy related or Type 2 (there is an estimated five to seven times higher risk than usual).
Higher blood pressure
Fatty liver disease
Thickening of the endometrial wall (lining of the uterus) which may increase the risk of cancer if not treated.
Fortunately, with early diagnosis and proper management, these risks can be reduced.
What causes PCOS?
No one is quite sure what causes PCOS. Recent studies indicate that lifestyle, environmental and genetic factors can be involved. Sometimes it occurs in families where there is a history of PCOS, diabetes or heart disease.
How is PCOS diagnosed?
Early diagnosis is important so that your symptoms can be managed. Early diagnosis may also prevent long term health problems.
If PCOS is suspected, your doctor will ask you questions about your family history, and your own medical history, including any problems you might be having with your periods (menstruation) and ovulation. Your doctor will also order blood tests to check your hormone levels and an ultrasound to look at your ovaries.
The doctor will suspect PCOS if two of the following situations apply to you:
an ultrasound picture of your ovaries shows polycystic ovaries (PCO)*
you have a history of menstrual or ovulation problems
there are changes in your hormones (like testosterone) that cause excess facial and body hair or acne.
Your doctor will also look for signs of insulin resistance or metabolic syndrome and will also do tests to exclude or rule out other hormonal conditions.
*PCOS is not the same as polycystic ovaries (PCO). PCO only relates to how the ovaries look on an ultrasound, not the entire syndrome. Many people have the ultrasound findings alone and do not have the syndrome.
Hormonal Changes of PCOS
The ovaries and adrenal glands make androgens. Androgens are the so called ‘male’ sex hormones – such as testosterone – that are present in low levels in all women. In PCOS the ovaries either produce more androgens than normal or the body is more sensitive to these levels of testosterone. This may lead to hair growth, acne and irregular periods. It also affects ovulation (release of the egg from the ovary once a month), which may not occur regularly.
Insulin and insulin resistance
When we eat, insulin is the hormone released from the pancreas that keeps blood glucose (sugar) levels well controlled. It moves glucose from the blood to body cells to be used for energy. PCOS increases the body’s resistance to the action of insulin, so it takes higher than usual levels of insulin to let glucose into cells. This is called hyperinsulinaemia. The higher insulin levels affect your ovaries, and change the production of other hormones, such as testosterone, leading to the hormonal symptoms of PCOS.
Insulin is a growth hormone, which normally increases during times such as adolescence and pregnancy, but constant high levels can lead to too much fat in the upper body. Extra fat tissue can then have the affect of increasing the insulin resistance which will lead to even higher insulin levels, further weight gain and worsening PCOS symptoms. Not all women with PCOS are overweight, but thinner women still can have some insulin resistance.
If you have higher insulin levels it does not mean you have diabetes, as your blood sugar levels are usually still normal. However, if your body is eventually unable to create enough insulin to maintain the higher levels, diabetes can occur.
I can’t stress enough about trying to keep your PCOS under control as you can read in my PCOS story here
I found it harder to continue to be healthy whilst pregnant with my second child, I craved so many bad things and it was a really rough pregnancy, I had a toddler, no family support and I suffered from bad morning sickness and basically felt sick through the whole pregnancy. The birth was normal and I gave birth to my second beautiful daughter.
So here I am now with two beautiful daughters, my eldest daughter was 22 months and of course my new born baby girl. but I was so sick, I still had a lot of pain and my postpartum bleeding just wouldn’t stop. I was finding it hard to breast feed, look after my youngest daughter and maintain a house being so tired and in so much pain, with no support at all.
I was admitted to hospital about a week after the birth and they ran so many tests and found nothing, now remember I am still un diagnosed with PCOS or Fibromyalgia. I was told there was no other diagnosis they could give me but postpartum depression.
The D word! Oh how I hate the D word, its like when theres nowhere for them to go that’s where they head.
Well that didn’t wash with me so I went to my Gynaecologist for my 6 week check up and I was still bleeding heavily, he ran more tests and now I had become anaemic and was told to go home, relax and take some iron tablets and the bleeding should settle down.
It didn’t. 3 months had passed now and I was still haemorrhaging, I was struggling so much, I was so fatigued by now, so they checked my iron levels again and they were still low, I was trying express how hard this was being in pain, bleeding non stop and trying to cope with every day life, so off I went on a merry go round of Doctors and Specialist to try and find out what was wrong with me.
This just went on and on and on, no one listening to why I was feeling so sick and in pain, no one wanting to do anything to stop this haemorrhaging which had now been constant for 6 months.
I went to my naturopath who told me I needed to see Dr Ian Buttfield a specialist physician who specialised in Chronic Fatigue.
He diagnosed me with CFS/ME and put me onto vitamin b12 injections, some valium to help with the pain and basically sent me on my way. with a diagnosis but still in pain, bleeding and unable to cope. Back then the pain wasn’t even relevant to a CFS/ME diagnosis, so I was still being seen as a malingerer and a lazy depressed mother who needed to buck up her ideas and well basically eat better.
I was now finding it even harder to lose the weight I had gained whilst pregnant, what with the un diagnosed PCOS and the pain and fatigue not to mention the copious amounts of blood gushing from my body for over 9 months now.
That seemed to be their answer to all of this though, lose weight and poof all your ails will be gone.
So through the pain, fatigue etc I tried ohhhh god knows I tried to lose weight but it would not happen. You would think having a 2 year old and a 9 month old to run after would help? I ran their kindergarten groups and went to every single Bananas in Pyjamas concert that came to town, every Wiggles concert, and anything else that would bring a smile to their faces.
But I was dying inside. I had so much pain and fatigue, I had made so many visits to my gynaecologist who admitted me for numerous dilatation and curettage (D&C) procedures, I was constantly in hospital but nothing would stop the bleeding. The next course of action was to try me on all sorts of hormone patches and pills and he made me feel like I was making a fuss about nothing, so did my husband at the time and my family, I guess if you have never haemorrhaged for 18 months non stop then you have no idea what its like? I asked my gynaecologist for a hysterectomy and he wasn’t happy about it, he didn’t think it would help, so off I went home again trying to get this bleeding to stop, I saw acupuncturists, Chinese herbalist, naturopaths but nothing would help. I had had enough!
After a heart breaking few weeks of deliberation I needed to make a decision. I wasn’t sure I wanted more children given my state of health and after all I went through to have children, to now think about removing my uterus, it was a hard decision to make but I had no choice so after 18 months of constant haemorrhaging, trying all sorts of hormone patches and hormonal pills, numerous curettes I said to the Gynaecologist HELP ME! I begged him please you HAVE to take this out, its the only way to stop it! PLEASE!
I had my partial hysterectomy in 1998, and when the specialist came to see me, he told me these words that still haunt me
“you are so lucky we got it out now, you had cystic hyperplasia – your uterus was pre cancerous”
and then these words – words I had been waiting to hear for 25 years
“you also have Poly Cystic Ovaries” “they were so large it was too dangerous to remove them they were adhered to your pelvic artery” “they were so big I took a photo for a book I am co author on, here is the photo”
There they were, my ovaries – the things that were slowly killing me, still inside me, still poly cystic and still causing me health issues, but as is the usual practise of the medical profession, they removed the symptoms and left the problem.
Great! so now i still have them and now what?
“theres not a lot we can do about them” see you in 6 weeks! bye!
The bleeding had stopped and I was feeling a lot better, but this was not the end of my struggle with PCOS, not by a long shot!
My ovaries would continue to cause massive issues including 3, 10cm growths.
To be continued..
Thank you to everyone for your wonderful support and feedback for Part 1. which can be found HERE
It is nice to know that I can reach out to others out there who are also dealing with this syndrome
I will continue where I left off, trying to conceive….
By this time I was frustrated at not being heard, I was ready to give up work and was now trying to fall pregnant. I was told by the doctors that I would never be able to have children because I was not ovulating and they didn’t know why, but being stubborn as I am I wasn’t going to take that for an answer, so I told him I would like to try and was put on all sorts of hormone replacements and hormone patches to try and induce ovulation, then I would haemorrhage and then go off them and have no period. I was still having numerous D&C’s to remove polyps and then they put me on Clomid to try and bring on ovulation and I had to drive an hour every morning to have blood tests to check and monitor my hormone levels – I was living in the country and I didn’t have this facility close by.
The Clomid made me so ill, I was having hot flushes, dizziness, vomiting and generally feeling very unwell. But hey, I was ovulating and producing 6-7 eggs a cycle.
The exhaustion coupled with the still undiagnosed fibromyalgia was only compounding the problem but I continued to do it for quite a few months. Then one day they called me into the office and told me that this was not going to work for me and that I needed to stop and they were refusing me any further treatment, I was not happy. So I went to the head of the hospital and said they are denying me the right to continue to try and fall pregnant, to which he replied ..”we don’t have the resources to continue with someone who is a lost cause…”. I was shocked by this and was still not going to take NO for an answer. I left in tears, went home and pondered on it quite deeply and thought – I am going to have to do this on my own – so I contacted the head of the hospital again and told him he could not deny me blood tests and I wanted the tests to monitor my hormone levels, that I didn’t require any other treatment or any doctors to follow me up, all I want is the blood tests to which he agreed.
So now what do I do? I was basically told I was infertile, no one wanted to help me, no one had a diagnosis as to why I wasn’t able to conceive..now what?
That was when I decided I needed to go within and truly connect with my inner self and work out why was this happening, what was the cause of why I wasn’t getting pregnant. Was it fear? Was it hormonal? Was it my body?, So was it physical, emotional or spiritual?
I wanted to have a baby, so I knew it wasn’t emotional, I knew that spiritually it was time for me to have a child so I knew it wasn’t spiritual so then I realised it was a physical thing. I had gained a fair amount of weight by this time, with the stress and the pain and the rampant hormonal changes and this was what they were blaming it all on – weight gain – not why I would be gaining weight, but purely that overweight=inability to conceive! Fobbing me off as just another overweight patient who couldn’t fall pregnant and it was heartbreaking.
I wasn’t about to go on a strict diet and lose a few pounds so they could then put me back onto the cycle of hormone replacement and not actually work out what the underlying problem was, I just wasn’t going to do it.
I then went on a very long and costly journey of natural therapists and herbalists, Chinese medicine and iridologists, all trying to help but never quite getting it right. Everyone was always focusing on losing weight NOT why I was gaining weight in the first place…a hormonal imbalance! Why wasn’t anyone listening? I had read a bit about PCOS by this time and had almost self diagnosed myself but no one would listen enough to point me to a specialist to get a proper diagnosis.
So I went to the local library and read every book I could on trying to conceive naturally and I believe that when you look at these things you need to look at what resonates with you and take that information and leave the rest aside. So I chose some aromatherapy books, some herbal books, some books on conception and on hormonal issues. As I am a bit of a “flicker”, I would flick through and see what I made a connection with and take that on board and move on to a new book, I read and read book after book and I decided that what I needed to do was what was right for me.
I needed to sort out my hormone problem myself and I wasn’t about to go on a diet, I wasn’t about to go on anything too strict, but I totally changed everything I was doing. I gave up work so I wasn’t stressed any more, I eliminated all processed food out of my diet – I didn’t go crazy, I just made everything from scratch and went as organic and I could and that was mainly so I could detox my body. I took some supplements which I don’t think really helped but didn’t hurt either, I did drink raspberry leaf tea and I think that helped to prepare my uterus lining as I wasn’t ovulating and when I was I was haemorrhaging so I needed to calm it down and I felt the raspberry leave tea helped that. The other thing I did was get rose geranium and chamomile oils and rubbed them on my stomach every day, it had a very calming effect. I was feeling very calm and was now losing weight, I started to meditate and exercised slowly as I still had undiagnosed fibromyalgia, so I had to learn what worked for me and what didn’t.
After a little while I ovulated! I knew when I had ovulated as I would get such intense pain – I think with PCOS you do get more pain as the egg follicle is a lot more dense and has quite a hard membrane to come out of so it is quite painful, so I had to continue on this path and now I was taking my temperature every morning waiting for it to spike and checking out my cervical mucus and this was all the knowledge from reading the books I had found, I was still going to have my blood monitored but not as often and I had to continue on this healthy path.
The first time that I decided to try it all out when my temperature had spiked, I was pregnant!
I went to the doctors to confirm and sure enough the so called impossible had happened, I was pregnant! I went to the hospital knowing full well I was pregnant but needing the blood test anyway and they confirmed. A few weeks later I got a congratulations letter from the head of the IVF department asking me if I would like to come and talk to other overweight women and how losing weight helped me to fall pregnant, when I replied that it was NOT losing weight but how I did it that mattered, I never heard back.
I went on to have a healthy pregnancy and a healthy baby girl.
I continued to live a healthy life style and conceived my second daughter 18 months later, again, unaided by drugs and unhelpful doctors.
But I still had undiagnosed PCOS which would flare up again putting me in and out of hospital for the next few years and lead to what could have been a deadly diagnosis…
To Be Continued………..
**Please note I am very graphic with my details in this blog**
When I was young about 15 I suffered with heavy periods and mind numbing cramps when I had my period, so, as they do, I was put on the pill, that lasted all of about a month, I felt so ill I went off it and forgot about it, learning to deal with the pain instead, using hot packs and a Panadol.
As I got older, around 17 -19 I had horrible pains, which I would later learn through my own investigations was Mittelschmerz, lower abdominal pain that occurs in women at or around the time of an egg is released from the ovaries (ovulation). However I was told it was stress and to just relax and when that didn’t help and I actually passed out from the pain one day, I has in hospital having my appendix out! That was the “diagnosis”
I continued to have pain and as I also had undiagnosed Fibromyalgia, I wasn’t sure half the time where the pain was coming from, I simply hurt all over and now I was developing new symptoms, hemorrhaging, massive clots and just feeling sick all the time, doctor after doctor would see me and send me away with new medications, which never worked and only made things worse, I was diagnosed with the same banner they put people in when they fit into the “too hard basket” depression! I had never had a depressed day in my life so I refused to believe it and also refused to take the anti-depressants they were trying to get me to take.
I went on about my life, got married and worked, usually with a lot of pain, but I just thought I was lazy and so I pushed through, I started to gain weight around 19, being told now that THIS was what the problem was, I needed to lose weight and all my problems would go away, I hasten to add I wasn’t even overweight, merely well-developed and curvaceous, however the weight did continue to pile on and then all of a sudden I missed several periods, I would go over a year with no period at all, “lose weight, you’ll be right” was all I was told, so I did, I lost weight and now my periods returned with a vengeance, back to the hemorrhaging, massive clots and just feeling sick all the time, now I was passing hard polyps and in and out of hospital having Dilation (or dilatation) and curettage (D&C) they would find large polyps and remove them then I would go home and nothing would change.
One day after D&C I was recovering in the hospital when I felt this horrible pain in my stomach, as I had put up with so much pain for so many years I just laid there, when the nurse came in I asked her for some pain relief, “you don’t look like someone in pain” she said, I rolled around in pain for a while then felt so sick I was on my way to the bathroom when I felt one of those horrible gushes and onto the floor was blood and a large polyp, when I pressed the button and the nurse came in she looked at me, looked at the floor and said “oh my you must have been in a lot of pain” duh!!
The doctor told me there wasn’t much to report and to go home, I did, and I continued on the cycle of heavy periods and no periods. Not game enough to continue seeing a doctor or telling anyone how bad I felt, I simply continued on.
After many years of this roller coaster of pain, hemorrhaging, anaemia, fatigue and sheer frustration, I wanted to get pregnant, but by now I was not even having a period, at all again!!. I was not coping at all well, especially when the doctors told me I would never be able to conceive due to the lack of ovulation.
To be continued…………