Ramblings of a Ringless Wife

Ringless Wife, Messy House, Cluttered Brain. All in a standard day.

March 30: The last of the PCOS blogs… for now.

So far we have covered a myriad of information about PCOS. I spent quite a while thinking up a fitting ending to this mini-series, and I think I have found it.

The finale was going to be disgust at the lack of support and information around my local area. I was going to exhort change, and knowledge, and beg the blogging world to some how get it through a politicians head that this needed to change. There needed to be more support. There needed to be somewhere that women could go to so they could get information or find someone who could direct it to them.

I was going to wish for change. And then I changed my mind. I was going to BE the change. I was going to FORCE the change. I was going to make a DIFFERENCE.

I set up a small piece of FaceBook and created a support page for us Soul-Cysters who have no where to go to.

I have already had emails from four or five different women who are thanking this page for being in existence, because they needed it.

I already have plans hidden within plans for what me and these magical ladies are going to achieve. At the end of the day, realistically, we may only achieve the friendship and support we crave – but what if we achieve more? What if we educate just one person a week, and they have a bit more knowledge about PCOS and what it entails? Personally, I would classify that as a big Fat win!

I have already been asked to take it to a State and National Level for support. There many “support” pages out there, but none on a local level, and none who don’t speak down to you. This is what I want to achieve. This is what I want to enact.

Yes, I have PCOS. But PCOS doesn’t have me. I will find a way to overcome this disease, and I WON’T let it beat me.

PCOS can wreak havoc on my body. It can give me head aches which are blinding. It can give me hair and my waxer a job. It can make me cranky and nasty.

But it can be ready to have its ass kicked to kingdom come, too. I will fight it tooth and nail. I will achieve what it is I desire. I will NOT let PCOS rule my life.

PCOS is an absolute bitch of a metabolic disease. It is a down right pain in the patootie.

But what’s worse than any of that?

A woman. On a Mission. Who is might pissed off and is ready to fight tooth and nail for what she wants.

I will make a place that women can go to if they need to cry. I will make a place that provides local support.

I will teach PCOS that just because I have it for life, doesn’t mean it will take it over.

I will be a mother. I will be an ambassador.

But above all else, I will be stronger than PCOS can ever dream of being.

If you are interested in the PCOS support page I have set up, you can see it here

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March 29: PCOS pt 4

Are you all still with me? You’ve done very well if you are!

So far in our “focus week” we’ve covered The medical, the survey, and the personal aspects of PCOS. So what’s left?

The physical signs.

A common side effect of PCOS is being over weight – but that being said it is not exclusively attached to those of us who are bigger. This is thought to be tied down to insulin and the way our bodies process/use it. It is also what makes it harder to lose weight because of the metabolic problems that the insulin and PCOS causes.

Another side effect is having patches of skin which are excessively dark and look almost dirty. This because of PCOS and its insulin effect – Acanthosis Nigricans. Acanthosis Nigricans is a skin condition that produces thick, dark, velvety skin. Typically, the disorder affects only skin on the groin, armpits and neck. However, This is not tied only to PCOS but it is one of the side effects that I personally have.

Hirsutism, which is excess hair on the face, arms, chest and/or back is caused by the hormone imbalance that plagues us “SoulCysters”. Hirsutism affects women with PCOS, since the rising of androgens causes a male pattern of body hair, sometimes excessive, particularly in locations where women normally don’t develop hair during puberty. The medical term for excessive hair growth that affect both men and women is hypertrichosis.

Thinning scalp hair is another one that is a pain the friggin back side! I have a patch on the left hand side of my scalp where I almost have to sculpt my hair to cover this 1CM wide and 5CM long line that my hair hardly grows in. There some drugs that can modestly help this issue but as I am not a doctor, I’m not going to list them here. Suffice it to say, there is help for it, just go and see your GP or your Endocrinologist.

Skin tags popping up on your body, particularly around the neck and armpit, are also tied in with PCOS and the insulin dependance. These can be skin coloured, brown or black. These may die off of their own accord, or you can get them frozen/cut off at your GP. They pose no threat, other than the way you may feel about how they look. However, it is very important to get your tags checked regularly just to make sure that they are not moles (some can look very similar)

Irregular periods are another symptom that generally only the woman picks up on. However, as well know, periods can be irregular for a variety of reasons, non-PCOS related. In SoulCysters, it is caused by a lack of ovulation due to the eggs being collected in cysts and not released. There is a drug given to diabetics that can help this, but once again I am not willing to broadcast it as I am not a doctor.

Now, having one or more symptoms does not mean you have PCOS. But, if after reading this, you feel the need to get checked out, please do.
See you tomorrow for our 5th and final piece on PCOS.

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March 28: PCOS pt. 3

Ok… we have had the medical terminology lesson here
and we have had the research survey here

Are you ready for the personal piece?

Living with PCOS isn’t easy. Not by any singular long shot.

PCOS brings with it a myriad of things that you have to live with:
Excess Hair [Hirsutism]
Irregular periods with a possible small amount of spotting
Painful periods when they do decide to come
Oh yeah, self hatred.

People do not understand the sheer heart-brokeness that comes along with PCOS for someone who is trying her hardest to create a family.  It isn’t “just a syndrome” or “just cysts.” It is the knowledge that your body is imperfect and unable to handle the one thing a womans body should be able to do. It is the knowledge that nothing you do – nothing – will ever take the syndrome away. I can lose any amount of weight that I can, and it still will not take it away. I will have these effing cysts till the day that I die.  They will control my life and my family dreams forever.

The worst part is when you begin to lose your identity to this curse. You cease to be “so-and-so” and turn into “so-and-so-with-PCOS.” You identify yourself as a PCOSee and are no longer a “normal” person. You find yourself looking at every baby or child and hating your ovaries, seeing people with blooming bellies at thinking “PCOS has robbed me of that.”

Another thing that is incredibly hard to deal with is the sheer jealousy that must seep out of your pores whenever you see a pregnant woman or a new born baby. It doesn’t matter if it is a family member, a stranger, a friend or a work colleague. The hate you feel toward yourself, you have hidden behind a mask of green-as-grapes jealousy.  Common questions for me at this point tend to lean toward:

Why not me?
When is it my turn?
Why do they get a baby and I just get hair?
What have I done to deserve this?
Who the hell decided I was strong enough for this?

Of course there is no answer to ANY of the above questions. There has been no link thus far as to whether it is familial or hereditary, whether it is a factor of environment or something that the mother ate whilst pregnant. NO ONE KNOWS but hopefully, one day, someone will.

Living with PCOS is like belonging to an exclusive club which you have had to give up your motherhood rights to join. But there are no funky badges or cool shoe laces. There are just tears and hate and heartbreak.

People don’t realise that asking someone “when are you having babies?” can be devastating, and heart breaking. I no longer ask anyone this question because, for all I know, they may be wrestling the same damned demon I am, And I wouldn’t even wish this on my worst enemy.

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March 27: PCOS pt. 2

The following is survey I had to fill out in order to help research in to PCOS.

When where you first diagnosed?
How old were you, when you were diagnosed?

How old are you now?

Had you heard about PCOS before your diagnosis?
Nope, and even after being diagnosed I still wasn’t sure. It wasn’t until Daniel and I began trying for a family that I began in-depth research

Looking back, what where your symptoms, before you were diagnosed?
My period was the only indicator – it was never regular and the cramps were so bad I woke up screaming thinking I was being stabbed.

Did you have any symptoms when you were younger?
I don’t know
What medications do you take, related to PCOS?
None, at the moment. I was put on Metformin which made me really ill and forgetful – I even forgot my dads birthday while I was on them.

If you take medications not related to PCOS, what are they, and what are they for?
Efexor for depression.

How are your symptoms now?
The lack of periods, Hirsutism [which is excess hair]

Is your doctor meeting your needs?
Not at this very stage as we are having to focus on other issues.

What are your biggest fears, about the PCOS?
A cyst getting  ruptured and giving me blood poisoning. The slightly higher likelihood of cancer. The insulin resistance. But the biggest one is not being a mother.

Have you switched to an Endocrinologist?
Nope. My doctor and I are working on a plan to see if a drug will help me before heading to the Endocrinologist.

What meal/exercise plan works well for you?
None. I start off really well and then get all depressed and moody.

Do you want children?
Yes. My partner and I have been trying for over four years.

If you do/don’t, how do you feel about other women, who don’t have PCOS, that do/don’t want children?
Jealousy, thy name is Me. Angry, resentful, hurt, depressed, jealous, envious. It took me a long time to get to a point where I can be devastated for me but happy for them. I still sometimes struggle with it.

If at all, how has your relationships changed with your friends and relatives, since your diagnosis?
It didn’t while I was younger. But now it tends to make me hate myself and my body with a passion. People don’t talk to me about babies or ask when we are having family any more. And a lot of people won’t tell me that they’re pregnant because they know it shatters me.  I have found a lot of new friends whom understand what I’m feeling and how much I hate my body, and I also have friends with PCOS who have babies, so that provides some beacon of hope.
I am also the “go-to” person now for people who have been diagnosed and want information as I have been researching it for so many years.

The hard part about the above survey was that It only scratched the surface of how I feel, and it didn’t ever come into about how it affects my day to day life. It doesn’t go into the heartbreak and pain that you live with and smother every single day.

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March 26: PCOS pt. 1

Do you know what it is?
Do you know what it does?
Do you know how to deal with it?

Ill bet very few of you do.

Polycystic Ovary (Ovarian) Syndrome (PCOS) is a hormonal disorder. Sometimes PCOS is described as an ‘endocrine’ disorder, it’s the same thing. Overseas research suggests its affects between 5 and 10% of all women of childbearing age regardless of race or nationality. However a Melbourne study published in February 2005 suggests the figure could be much higher, at 12-18% of Australian women or one in eight women. This equates to around half a million Australian women and teenagers!

It’s an unfortunately named syndrome, as people often think of large grapefruit-sized cysts when they hear the term ‘polycystic ovaries’. In the case of PCOS, the cysts are tiny. Using an ultrasound, they look like black dots on an ovary. These cysts are eggs that have failed to properly mature and release from the ovary.

PCOS symptoms usually present themselves during puberty but may also begin in the early to mid 20s. Certain symptoms are life-long, others will cease at menopause.

Syndrome means this is a condition that has a number of diagnostic symptoms with no simple hard and fast diagnostic test. Each woman presents with a different number of symptoms and together they make PCOS. It’s rare that two women share exactly the same symptoms.

Although polycystic ovaries can be one of the symptoms, they aren’t present in all sufferers, making the most common name of the syndrome confusing. In addition many women without PCOS have polycystic ovaries but none of the other symptoms and there for it is important to understand the difference between the syndrome and having only polycystic ovaries.

PCOS develops when the ovaries overproduce androgens – male hormones, like testosterone. The overproduction of Androgen usually triggers overproduction of LH (lutenizing hormone), which is produced by the pituitary gland.

Research suggests the cause of the overproduction of testosterone by the ovaries is due by a woman’s inability to process insulin effectively. This is called Insulin Resistance or Hyperinsulinemia (both pre-diabetic conditions). When insulin levels in the blood are too high, the ovary reacts by producing more testosterone. This triggers a cascading effect of other conditions like excess hair growth, scalp hair loss and acne.

The inability of the woman to process this excess insulin can also lead to obesity.

So basically, as I’ve said above, PCOS is a condition in which the eggs that are meant to be released from your ovaries aren’t. This means the chance of falling pregnant (for me, anyway) is about 12%. That number jumps to about 28% if I do IVF. Daniel and I have been trying for family now for over four years.

I have decided to make this week a “focus” week. I want to draw awareness to this soul-destroying syndrome, because people don’t know what it is.

It is, effectively, a silent syndrome. There are a few outward indicators of it, but nothing that screams PCoS. Hopefully, by the end of this week, I will have educated at least one person about this disease.