Published on The Mighty :

POLYCYSTIC OVARIAN SYNDROME
The media write about Izzy Judd, Victoria Beckham and Jools Oliver. One thing these three celebrities have in common is PCOS, or Polycystic Ovarian Syndrome.
‘Do you have trouble getting pregnant, adult acne, is your hair falling out, irregular periods, weight gain or excessive hair growth?’
These are things people look for when seeking a PCOS diagnosis, however nobody truly understands what this diagnosis means.
A few of my relatives and friends are aware of my PCOS, but the details of this condition remain a secret.
In no way am I saying that PCOS is worse than any other condition out there, but it takes its’ toll not only physically but mentally. It is life changing in its’ own right.
Nobody sees my daily struggle with this condition that has plagued me for almost 10 years.
Nobody watches me as I shave my face daily, inspecting for new dark hairs, ingrown hairs or scars, wishing that I was somebody else and that this would all end. Because let’s face it we all hate something about ourselves and we all strive for perfection.
People I have worked with in the past, you have seen my ‘Poker Face’ when I am trying to lift someone more than my weight up their stairs getting them home from hospital, or grasped my stomach when doing patient observations, pretending I have lost my pen (again). It isn’t that I am unable to lift weight or that I am clumsy and lose my pen, secretly I am in agony with unovulated eggs and cysts in my ovaries, enduring daily pelvic pain that can come with this condition.
The hospital ultrasound technician, who was looking for my appendix and ovaries on one hospital admission, who then thought they were clever claiming I had “too much adipose tissue to see anything”. They obviously didn’t realise I understood fully what you meant and I held back my tears, avoiding any more embarrassment.
The Doctor that told me that I probably was pregnant but they weren’t sure because the Positive test on Friday and the heavy bleeding that followed prior to the appointment but it was “most likely I was pregnant”. How can you grieve for something so small that you didn’t know for sure existed in the first place.
The fertility Doctors that say I can’t have my IUI/IVF until my BMI IS 35/30 and that losing a couple of stone in 6 weeks ‘should be easy’. Are you kidding me! Yes it shouldn’t be that difficult but when you have insulin resistance and your body doesn’t like dieting it make things more difficult. The fact that I have to practically starve myself because the diets aren’t working (and this is not an excuse – I do my best and have been very successful so far) but it is never good enough for medical staff. Each day (not recommended) I stand on my scales hoping that the numbers have gone down. The same goes for my measuring each week.

scales Throughout my Weight Battle, it can only go down from here….and it has!!

At the age of 24 I have had to endure appointments, exams, scans, swabs and tests, not to mention seeing several different doctors. Half of which involve me being half naked suspended in front of a Doctor. I haven’t had a period for at least 9 months and now have to endure more medication to bring one on. Adding to the tablets that are about an inch long that I currently take three times a day.

bloods
The sad truth about PCOS is that there is no one cause, the theory is genetics plays a role however this is not proven. The effects are not just physical but they take a huge toll on a person’s mental health. Unfortunately PCOS can also cause other issues, gestational diabetes, premature delivery and miscarriages. Not to mention depression, anxiety, diabetes and sleep apnea. I scared my wife half to death once when I briefly stopped breathing during my sleep, thankfully it only happened once and has not happened since.
PCOS is actually quite common. The condition causes constant embarrassment, pain and fear. Fear that others will see the hairs on your face and comment about them or that the pain may finally mean that your colleagues are aware of the condition as your pain threshold gives in. Fear because you can hear others question why you are in the doctor’s office, why you are sat in maternity surrounded by pregnant women when you have a fat stomach but are there to see the fertility specialist. What really annoys me is that they choose to give the patients with fertility issues appointments in the maternity department. Talk about rubbing it in your face!!

I was 15 when I first realised my symptoms. I just put it down to the recent Eating Disorder Behaviour. Where I dropped from about 11 stone to just under 6 stone. Nobody noticed except my close friend noticed and I put weight back on to be 9 stone prior to having some teeth out; as I knew they would weigh me for the general anaesthetic. My periods were all over the place, mainly absent, and I was getting abdominal discomfort. I snuck to the Doctors one afternoon and Polycystic Ovarian Syndrome (PCOS) was mentioned, the Doctor ordered blood tests and they were done that week. In 2010 I had surgery to remove 2 cysts from the ovary but still had no true diagnosis of PCOS.The last few years has been scans, blood tests, exams and consultant visits. Now I’m 25, having been on Metformin for 4 years and now have an official diagnosis of PCOS. I believed I handled the condition pretty well, it affects quite a lot of women and it isn’t really talked much about. I have longed for my own family since I was 14, but wanted to finish my education first and get a job and do it when is sensible for me to do so. At 17, in my first relationship the discussion of children came up during that 3-year relationship, but it was clear the time was not right for my partner at the time, however for most of that time I stopped taking my contraceptive pill as it was making my symptoms worse, especially the weight gain.

I suffered a miscarriage during this time but never managed to conceive again.

That relationship ended and I was approached by a friend who agreed to help me conceive a child. Still no Luck. I met my wife in 2012, we married in 2014.

By 2012 I was seeing the consultant at the hospital and awaiting to go through fertility treatment to have children, even if I would have been on my own. This is my goal in life. The first time PCOS brought me to tears was when I went to see my consultant having lost over 50 inches off my whole body but my weight didn’t reflect that loss. My Consultant was unable to send me to the next stage of treatment, the IUI/IVF because my BMI was 34.4, the goal was under 35, but yet 34.4 was not enough it had to be 34. This is the first time my PCOS actually made me cry.

I coped with the surgery, the miscarriage and the daily challenges the condition brings me. But this one incident with the Doctor, where I am being denied my only chance of being a mother because I cannot get my weight down enough.

It isn’t like I’m not trying, I am. I have my bad days like everyone when it comes to Food but I thought I was doing really well following my Diet Plan. But I find my PCOS symptoms messes with my blood sugar and makes it even more difficult to lose weight.

I was told to come back in 6 months and if my weight wasn’t down I would be discharged from the department until my weight was down.

It hurts because If I could afford to go private I would and if I could get pregnant without the help of Doctors and treatment then I would.

But I cannot.

The one thing a woman’s body should do – Mine is unable to do.

And that hurts.

At present PCOS defines me….                             

It was first mentioned when I snuck to the shops but actually went to the doctor secretly at 15. 9 years later I let this rule me, and it is slowly taking over.

The NHS defines PCOS as:

Polycystic ovary syndrome (PCOS) is a common condition that affects how a woman’s ovaries work.

PCOS affects millions of women in the UK.

The three main features of the condition are:

• cysts that develop in your ovaries (polycystic ovaries)
• your ovaries do not regularly release eggs (ovulate)
• having high levels of “male hormones” called androgens in your body

You will usually be diagnosed with PCOS if you have at least two of these features.

Those 3 bullet points….I TICK ALL THREE!!

I have had one surgical procedure (private through health insurance, I refused to wait 18 months)and was due another but doctors decided to wait it out instead.

  
My last period : 23rd February 2015

Difficulty getting pregnant: very now due to same sex marriage but before I was in relationships which never resulted in pregnancy. There was one possible pregnancy, I say possible because I suffered symptoms of a miscarriage after a + pregnancy test but before confirming with my Doctor.

Excessive Hair growth……The worst thing in my life. The face is the worst!!!! Any tips on dealing with this I would be greatful. With my job I can only shave before work and after, when realistically I need to shave two more times during shift. I pluck sometimes but I barely get through any of it as it takes so long and my eyes hurt and oh the headaches!! I cannot focus that long on my chin, neck and face!! I could go on and on about hair growth but I will stop here!!

Weight gain!! I use to be 10 stone, then just under three years with my ex boyfriend, working in retail and eating out = 4 stone weight gain!! I use to have an eating disorder and went down to 6 stone before coming to my senses!! But since 14 stone I have gone uo and down to 18 stone if not 19. So working in kg now I am 102, was 104.5 a week and a half ago but due to food poisoning I lost 5kg and put on a couple when I started getting better. 102kg is my starting point again.

My IVF goal is a BMI of 30, I need to be about 80KG and need to achieve this ASAP!! but this is a huge stuggle for me. 

My hair has always been thick but I have developed thinning on the hair line, not so much of an issue at present but my hair falls out so much now. More than my dogs hair!!

I was never a massively spotty teenager, had the odd spot here and there but its more of an issue now, not as bad as others but it bothers me!!

Anyhows….

There is no cure!! Some people do stop their symptoms through changing their lifestyle but deep down it does not get rid of the condition.

I know I could make a huge effort to change my lifestyle but equally I am not as well equipt with knowledge as I think I am!!
The two pictures on this post are courtesy of NHS Choices.

Stacie-Mai xx