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Archive for the ‘Awareness’ Category

I’ve always said, “infertility is not over once you get pregnant” – and I can attest that it does not go away and the emotions and jaded thoughts / feelings / experiences likely won’t fade either.  Many of you started reading my blog prior to my successful cycle – and I’m sure I lost some readers when this blog took on a change from my intimate struggle with IF to my same-ride-different-rollercoaster experience with pregnancy.  For that, I do feel sorry because I never intended for those readers to not be able to relate to me or to not be okay reading about a pregnancy when it’s all they’ve ever wanted and more.  The irony of this is that I still struggle with IF every day.  Yes, with a big belly and two moving little beings inside of me.  I probably should have made a post like this sooner, as the subject and words always pop in my head, but it wasn’t until I found myself crying in the car this weekend while listening to a song that I realized I needed to get it out on paper, errr…screen. 

DISCLAIMER:  I’ll also preface this with the fact that I don’t think experiencing cancer and IF can or should be compared – different struggles and variables.  That being said, “research has shown that the psychological stress experienced by women with infertility is similar to that of women coping with illnesses like cancer, HIV, and chronic pain.” 

And with that, here is the song that had me hysterically crying in the car:

 

 
When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it.
 
What this song really made me think about was the struggle, the emotional mess, feeling of uselessness and helplessness that I felt throughout the two years of TTC.  How I felt ashamed and that I lost a sense of dignity between all the appointments, drugs, scans – so many times up on the table, feet in the stirrups that it became second nature and I could care less who was looking at my private parts.  Staring at negative HPTs every month for 20 months, wondering if it ever will happen.  Then doubting if I even deserved to get pregnant – or maybe I was being punished for something.  I even thought about my pregnancy and how scared I am EVERY DAY that something is going to happen – always waiting for the “other shoe to drop” as the saying goes.  I have a love/hate relationship with my monthly u/s – I love to experience my little peanuts, but I am always so scared that one of these times something major is going to be wrong.  It never goes away… 
 
She said, “I don’t think I can do this anymore”
He took her in his arms and said “That’s what my love is for”
 
And what listening to this song really made me realize was how blessed I was to have someone love me through it – and a few someones.  My husband, close friends, and close family were the ones who kept me going when I wanted to give up.  I know I couldn’t have done it without them.  For those of you still struggling with IF (and that’s probably most of us – regardless of being pregnant, having children, or not) – my once piece of advice is to find someone or a few someones to be your cheerleader, to hold you up when you just can’t do it anymore.  It makes all the difference in the world.
 
And when this road gets too long
I’ll be the rock you lean on
Just take my hand, together we can do it
I’m gonna love you through it.
I’m gonna love you through it.
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Septemeber is PCOS awareness month and I feel it is my duty to dedicate a blog entry to the very reason this blog exists.  I will discuss a little more detail about PCOS and then tell my story.  As always, you can find out more about PCOS and Infertility on my website:  https://projectpcosbaby.wordpress.com/about-pcos-and-infertility/

About PCOS

Polycystic Ovarian Syndrome (PCOS) affects up to 1 in 10 women in this world.  It is an endocrine disorder, not an ovary function disorder, and is represented by an imbalance in a female’s sex hormones including estrogen, progesterone, and androgens.  There are many symptoms, however the difficulty with PCOS is that it doesn’t present itself the same in every woman and can present itself in different ways.  To be thorough, though, I want to include some of the symptoms PCOS’ers may find and I’ve highlighted and added notes to the ones I have:

Changes in the menstrual cycle including:

  • Absent periods, usually with a history of having one or more normal menstrual periods during puberty   (If I am not on BCPs, I go months without a period)
  • Irregular menstrual periods, which may be more or less frequent, and may range from very light to very heavy 

Development of male sex characteristics:

  • Decreased breast size  (HAHA – those that know me know this is absolutely not the case here)
  • Deepening of the voice
  • Enlargement of the clitoris
  • Increased body hair on the chest, abdomen, and face, as well as around the nipples
  • Thinning of the hair on the head, called male-pattern baldness

Other skin changes:

  • Acne that gets worse  (This was the second most notable sign after going off of BCPs)
  • Dark or thick skin markings and creases around the armpits, groin, neck, and breasts due to insulin sensitivity

Other common symptoms include:

  • Diabetes
  • High blood pressure
  • High cholesterol
  • Weight gain  (Another struggle that became worse after going of BCPs)
  • Obesity

There are no “tests” for PCOS that conclude you have it.  Instead, a battery of testing and procedures are done to put together a story that would indicate that PCOS is the diagnosis.  Often, your OB/GYN can assist with the diagnosis, however it is my personal opinion that you are better off being seen by a Reproductive Endrocrinologist even if you’re not actively TTC in order to have them conduct the testing and review the results.  REs are typically more educated in endocrine disorders than OB/GYNs and are able to offer treatment suggestions that fit in line with your lab results.

My Story

In 1999 I was a sophomore in college and had stopped using BCPs as I wasn’t sexually involved with anyone at the time.  About three months had passed and I finally realized I hadn’t had a period, which I thought was weird but wasn’t concerned about since I wasn’t having sex.  I made an appointment for the next time I was home to visit my OB/GYN and find out what was going on.

The appointment with the OB/GYN was quick – we discussed what had happened and she basically told me that my ovaries were “farting”.  When I laughed and asked her REALLY what was happening she said that if she told me the real thing it wouldn’t make sense so that was essentially what was going on.  Okay, I thought – and she prescribed BCPs and I was sent on my merry way…for over 10 years.

I always questioned whether I would have a difficult time getting pregnant, but not because of my ovaries and their apparent gas issue.  It was more because of my mother’s history with cervical cancer and endometriosis that had me concerned.  About a year or so after I got married, so in 2008ish, I went to my PCP to have a physical and to talk about this weight gain I seem to be struggling with.  I never really had weight issues growing up and even into my 20s, but it seemed to happen quickly.  She did a blood panel on me and told me my thyroid function was fine and that it was probably “marriage” weight I was gaining.  Yep – basically I needed to get my lazy married ass up and get back to working out!  Well, okay then…

I went off of BCPs in mid-July 2009 to give my body the 90 day cleanse it needed before we could start actively TTC.  I essentially ran out of excuses to give Chris for not TTC, so August was his last and final date and I agreed and there we go.  Except – no period.  For three months.  In the meantime, I started breaking out in terrible acne on my chest, back, and along my jawline.  I went to my dermotologist and she asked if I had been diagnosed with PCOS?  So yes, it was my dermotologist of all people that first suggested PCOS to me!  I told her no but that we were TTC and so she prescribed me topical solutions and sent me on my merry way. 

In October 2009, I finally went to my OB/GYN to discuss this lack of period thing and beginning to TTC and that is when she suggested that I likely have PCOS.  She wrote it down for me on a piece of paper and told me to look it up online, but that I need to TTC naturally for about a year before a referral would be made.  She prescribed Provera for me and told me to take a HPT every 35 days and if it’s negative, use the Provera for 5 days to bring down a period.  She suggested I pick up some OPKs and track my ovulation and time the intercourse appropriately.  So, me being by the book, this is exactly what I did for a year.  And during that year I peed on a stick every day of every month (and spent TONS of money) and never got a smiley face.  I took them with me on business trips, I didn’t miss a beat.  Never once got a positive.  In the meantime, Chris had an SA done and got a glowing report card so we knew that all of this was on yours truly…

In November 2010, Chris and I both went back to my OB/GYN for a meeting.  As I am telling her about my lack of smiley faced on the OPK, I burst into tears as I think it was right then that I realized this was serious.  She immediately gave me the referral to an RE and handed me information on three different fertility centers in our area.

I went home crushed.  And with a lot of work to do.  I immediately began researching the various centers and making calls to get personal references – eventually ending up at Boston IVF with Dr. Zimon.  And the blog takes over from there…

I wanted to tell my story not only to support the awareness of PCOS, but to summarize my journey and my learnings along the way.  Things I would do differently if I knew then what I know now:

  • When I was first told about the ovary “farts”, I should have inquired more about what it was and what it could lead to so I could educate myself further and get control of it as soon as possible
  • I shouldn’t have waited over 2 years after getting married to TTC
  • After 6 months of no ovulation, I should have went back to my OB/GYN and demanded a referral to the RE

Hindsight is always 20/20 and I feel that things do, in fact, happen for a reason.  But I will be honest and say, just because you get pregnant does not mean the stress and worry goes way.  If anything, it increases.  I am very lucky that after about 6 months of being treated by an RE I find myself 8w4d pregnant, but the pain and struggle of PCOS and IF won’t go away until I hold a beautiful baby (or two!) in my hands.  Then, I believe, I will come to peace with the process and know that it was all worth it.  For now, I walk around in constant fear that I will lose what I worked so hard to get. 

In the end, I will come out of this process with an in depth knowledge of my body, of PCOS, and what I need to do to fight it for the rest of my life.  Because, it doesn’t go away and will never go away.  But I can fight it through efforts to better my health – and we can all fight it through awareness.

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Who’s your daddy?

As kids conceived with donated sperm grow up, life may get complicated for donors

http://www.boston.com/lifestyle/family/articles/2011/09/15/sperm_donor_has_75_kids_and_counting/?page=full

Wow.  I read through this and simply didn’t know what to think, but knew I had to post it in my blog so I could remember it and try and work through my thoughts overall.  The whole concept of donor egg and donor sperm is so important to the world of IF, but the truth of it can truly become eye opening.  Such as, ya know, having 70+ children running around the US before you’ve even been married to try and procreate your “own”.  It can be very real for those of us who were lucky not to have to use donor eggs or donor sperm as if you are undergoing IVF, you have to sign paperwork and make a very similar decision – what do you do with the frozen embryos?  Keep and use them all (which is an interesting concept if you’re those high producing women with 20 frozen embryos!), discard them, donate them to research, or…donate them to a couple in need?  Same thing for some people not undergoing IVF but that have frozen sperm for IUI cycles – what do you do with the remaining vials? 

Our personal decision was to donate the embryos to research (when we’re ready – those suckers aren’t going anywhere yet) and discard Chris’s spermcicles (again, when we’re ready).  I personally couldn’t get over the thought of another couple becoming pregnant with my embryo(s) or Chris’s sperm and bringing what is essentially our child into this world.  But, contrary to where the now lawyer was coming from, this is a very real process to me, to us.  I became attached to the two little things growing inside me as soon as the embryologist gave me that picture.  I am much too attached to the whole process and simply couldn’t live knowing that there was the potential for our kids to be in someone else’s family.

But, the path the now lawyer took is one I heard of when I was in college as well.  Trust me, when you’re getting those tuition bills (or heck, if you want to take that Spring Break trip to Cancun), you’ll consider doing a lot to make a buck.  I knew of girls who donated platelets, marrow, and yes, even eggs just to make some money for school.  I’m sure there were a handful of guys who may have even done the same at a sperm bank – but you’re not thinking at the time what that means.  And, I honestly think that most outside of the IF world wouldn’t necessarily put so much thought into what it means either – we see things differently because we’re so intimately involved in our reproductive lives, the technology that surrounds it, and it changes our perspective on what an egg is or what sperm are.  I do, however, think it’s a shame that the lawyer’s fiance is in a bit of a tizzy about it – especially since he told her about it from the beginning.  If she knew how much time, energy, and money it took these women and these families to invest in their children – she would know that there isn’t going to be hundreds of kids knocking down their door for a handout.  Yes, because of modern technology and the good old internets, being an anonymous donor isn’t so anonymous anymore.  But HE chose to list himself on the website and it truly seems as though he’s interested in meeting these kids and at least having casual contact with them.  For those who may come into health issues in the future, having this contact may even save one of their lives. 

It is a sticky situation (no pun intended – okay, maybe a little) but one that I hope doesn’t reduce the number of sperm or egg donors available to those who need it.  These individuals deserve a chance at having a family and if you’re removed enough from the situation, it can be a rewarding thing for you to do.  But, it is all very personal and a lot of thought should go into the process on either side.  In the end, he helped bless the lives of 70+ children that may not have been able to be a part of this world.  And he’s brought happiness and joy to many families that are the true “mom” and “dad”. 

 

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PSA: Birds and Bees

There’s not much about IF that makes me laugh, but this PSA from EMD Serono (maker of my wonderful Gonal-F and located here in the south shore of MA!) had me cracking up laughing.  Boston IVF posted this on FB this morning and I’ve watched it twice – many of the messages hit home and are true.  I’m hopeful this will help spread the word so that other couples know when it’s time to seek advanced help with an RE.

I don’t like to live my life with regrets, but if I could turn back the hands of time – I would have started this process a lot sooner.  It’s one of those “if I only knew then what I know now” things – I wouldn’t have kept pushing Chris off (literally and figuratively).  Hopefully from people reading my blog, friends hearing about my experience, and local and national efforts for IF awareness – less couples will make a potentially fatal mistake in the TTC process by waiting too long or not seeking the proper assistance. 

Hope you enjoy the video!

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