Here’s Your Chance to Be Heard July 26, 2010

One of the things I think it is really important to get back to on this blog is our original focus.  When Barbara and I mooted the idea over a year ago, the central tenet of this blog was to give an alternative voice to women with PCOS who weren’t solely focused on fertility/child bearing and weight.  When we first started, we wanted to offer an alternative voice to what is already available to women with PCOS in plentiful quantities all over the internet, available in print and even from most doctors.  I outlined this somewhat in an early post, which you can read here.

I do think we’ve drifted back to that weight focus and fertility perspective, and while it’s important to acknowledge the validity of the need for blog space and other areas around those two issues, I feel the need to reclaim this space for those who feel like they are silenced by the sheer volume of material out there on fertility and weight.

One thing I think is important to acknowledge is that no matter what life path a cyster takes, her quality of life should be the single most important matter in her health care.  If we insist on quality of life being the central focus, then no matter what our choices are, we are improving our lives with PCOS.

Now I have some subjects I will talk about, particularly around self esteem, body image and leaning into some feminism.  But what I need to know from those of you who are outside of the babies and weight loss boxes are the subjects that you wish to hear about.  I need you to speak up – I know you’re out there, I can see the WordPress stats and the search terms you use that lead you here to this blog.  I am also looking for some of you to do guest posts, or at least share resource material.  We need the topics and ideas that you have, or we’re never going to have any influence on our health, lives and treatment.

We need to hear from the older cysters, the single cysters, lesbian cysters, those who have chosen not to have children, the fat acceptance cysters, and any others that don’t already have a space in the mainstream.

So please, comment below and be heard, or you can email cystersunited@gmail.com to discuss a topic you might like to write about.  This is your chance to create the conversation you’ve been looking for.

Kath

PCOS May Delay Menopause/Lengthen Fertile Years July 25, 2010

Thanks to @lilabris sharing this little snippet on Twitter, I got my hands on the relevant issue of New Scientist (Vol. 206, No. 2764 JUN 12, 2010) so that I could share with all of you.

A study from Shahid Behesht University in Iran has found that women with PCOS are just as likely to have children as non-PCOS sufferers, and that they have a better chance of conceiving later in life.  It seems that while we produce high numbers of follicles in our youth, which causes reduced fertility, unlike non-PCOS sufferers, we benefit from the natural decline in follicles as we get older, falling into a normal range of follicles on the ovaries at a time when other women are peri-menopausal.

They have also discovered that statistically, women with PCOS have as many babies as women who do not suffer PCOS.

The team at Shahid Behesht University also wondered if women with PCOS might reach  menopause later as well.  Their study found that the hormone AMH, a marker of ovarian ageing, declined to menopausal levels two years later in the PCOS participants of their study, than the non-PCOS participants.  This also supports the theory that women with PCOS have a better chance at conceiving later in life than their non-PCOS suffering peers.

Clomid Side Effects July 23, 2010

This is my personal experience with my second round of clomid.  The first round garnered ZERO side effects.  In fact, I felt great.  However, probably through our schedule we missed that precious timing.

The second round was nothing short of a nightmare.

I went through horrible mood swings.  One night in particular, I was in a great mood and then suddenly I was ready to rip poor hubby’s head off….

The next morning I was a basket case too…. going between feeling fine, to feeling extremely po’ed off (I’m not exaggerating) to feeling super super low.  I spent the following morning in tears, again, for no reason it just comes out of the blue and it’s so overwhelming and strong.

To say I was an absolute witch to live with would be a gross understatement.  Hubby and I both were extremely frustrated by my mood swings especially now that there is no rhyme or reason to them.  My language was awful I was that POed… and for no apparent reason…..which is what got me.  I couldn’t even say why I was mad, there’s no reason!

Another side effect is apparently some insomnia…  yep… I was up another night at 3AM suffering from yet another side effect:  hot flashes.  I continue to get hot flashes during the night.

The “Northern Ladies” (breasts) were been SO sore…. I thought for sure it meant something was happening.  Turns out it’s just yet another side effect.

Half the time I was wondering what my own name was.  The confusion was also VERY frustrating and irritating.

Then one night of difficult sleeping, I googled “mood swings clomid” to see if I was the minority and I see that I am definitely not.  The first round of clomid I didn’t experience any side effects (outside of the “mild confusion” they call it – HA!) but boy was I ever making up for it this second time!  I hoped this all meant it was working.

I literally felt like this strange person has invaded me.

The fatigue is something else too….. I couldn’t get over the fatigue.

It was scary.  I was scared.  I thought the devil himself had been injected in me.  If someone had suggested an exorcism I would have said where do I sign????  I felt so humiliated and so frustrated because I feel like I have no control over these things and as hard as I try to keep it in and not upset anyone, it’s only a matter of time before I erupt.  I asked hubby one night what was it like being married to a psycho? lol

This was one chick’s experiences and of course by no means intends to be a “textbook” case of clomiphene side effects.

I went for blood work this past Monday so I hope to have good news soon!  The constant fatigue keeps me from regularly posting to this blog,  I’m hoping it will end soon.

Jenn