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Archive for the ‘PCOS’ 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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You never know how strong you are…until being strong is the only choice you have. – Unknown

That quote hit home with me a few weeks ago and I’ve been reading it every day since I first saw it.  How true it is was shown last night when, on a whim, I decided to run upstairs and take a home pregnancy test (HPT).  Without Chris knowing, I took the test and almost immediately, I saw this:

I couldn’t believe my eyes!  I asked Chris to come upstairs and he replied with, “you have IMPECCABLE timing today – every time I’ve sat down, you’ve asked for me to get up.  What do you need?”  I told him that he probably should come upstairs and he grumbled something about wanting to eat his cupcake and came upstairs.  I showed him the test and he had a confused look on his face and asked, “Wait, what does THAT mean?  What does two lines mean?” and I told him I was pregnant.  His face was that of utter shock.  We both didn’t speak for a few minutes and all he could manage to say was, “I can’t hug you right now – I don’t know what to think.” 

We finally caught our breath (and / or realized WTF was going on) and decide to call our parents and his sister.  I also let Julie and a couple of friends know.  The rest of evening was a lot of “holy shit” and “OMG” and “let’s not get our hopes up too high”.  I had a hard time falling asleep – so many thoughts were swirling through my mind.

This morning was my beta at 8:00am and then I headed to the airport for a business trip to Chicago.  I called and left a message for Nurse Karen and asked if there was any way to call me with my results before 1:00pm, I’d appreciate it as I’m boarding the plane then and don’t want to miss the call.  At about 12:00pm I got a call from Kate, the other nurse in the office (where is Nurse Karen again?!) and she said “I’m calling you with great news – congratulations, you’re pregnant!”  I just smiled from ear to ear and waited for the number I wanted to hear – she said my beta was 311 and they typically look for betas to be 50-100 so I am really looking to be in good shape.  She asked about my trip and said that she did have to tell me that Dr. Zimon typically advises against early pregnancy air travel.  I told her there was nothing I could really do at this point considering I was sitting at the airport and she reassured me that the risk was very, very small but it is still there.  I asked if there was anything I could do to mitigate the risk and she said no.  That was hard to hear – I don’t want to do ANYTHING to jeopardize what is growing inside me.  We had to coordinate how to get me more Crinone (progesterone supplements), so a box is being shipped to my boss’ office to arrive here in the Chicago suburbs tomorrow (LOL – I am very blessed to have an amazing boss).  My P4 level wasn’t checked with the beta, so I’m going to call tomorrow morning to inquire about that as I wonder if the Crinone is necessary if I’m producing the progesterone on my own.  Don’t get me wrong – I’ll shove whatever is necessary in my vagina to keep this pregnancy viable, but I would have thought they’d check.  Also, as Julie indicated, the P4 can show whether there is a likelihood of twins. 

Oh yes, it is not lost on me that my beta is high and what that can *sometimes* mean.  I’ll take whatever I can get – as long as it’s healthy – be it one or two.  (I may be forced to sell one on the internet if there is more than two…just saying.)

I am cautiously optimistic at this point.  I know that we’re not even remotely at a point of sharing broadly or out of the big risk zone.  I’m trying to keep the perspective of what I thought was the unattainable…can be attained with a lot of strength and perseverance.

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Coming Out

When you’re sitting around waiting for insurance approvals, you get to thinking a lot more than is recommended.  Also, BCPs make you insane and that is what sparks conversations in your head that may or may not be beneficial to put down on paper…or online.  At least when I am in a cycle, I can obsess over follicle sizes, waking up early to sit in traffic for the dildo cam appointments, etc…  Now my friends, we’ve reached a whole new level of crazy, I’m sorry to say.  But, maybe some of my random babblings about insurance, coverage costs, and now “coming out” is either entertaining to my readers or educational – maybe even both?  Either way, it needs to get out of this swirling twirling head of mine so, alas, here we are.

The whole concept of “coming out” in the infertility world is obviously quite different than that of the homosexual world.  But, I think the fear is quite similar – fear of questions, assumptions, rejection, change in perspective, etc…exist for both groups.  What got me thinking about the concept of “coming out” was a trip to the hair salon last week.  Random, I know.

While sitting for what was a ridiculous amount of time because my stylist was running 2 hours (literally!) behind, I got to talking to this nice pregnant girl, probably in her early to mid 30s.  I asked about her pregnancy, her current child (son, age 2), and all the typical questions around “what are you having?”, “what do you want to have?”, “any names picked out?”, etc…and it lead into the discussion about how she has these amazing pregnancies and she’s been blessed with good genes in being able to get pregnant relatively easily and have no horrendous pregnancy symptoms like the majority of women.  Inside I started to cringe, as would most women suffering from IF – as soon as she said “able to get pregnant relatively easily” I wanted to puke.  But, then something interesting happened – she started talking about how she and some of her friends discussed surrogacy and it came up because of a mutual friend who needed a kidney transplant.  They all did the question of “would you ever donate an organ as a live donor?” and that transpired into “probably wouldn’t because of the risk, but I would be a surrogate”.  It was interesting to listen to her talk about a few close friends of theirs who have been struggling to get pregnant and how she wishes she could help and that’s why she is so grateful to be able to have her son and this current pregnancy when she knows how tough it is for so many others.  It was like a sign from the heavens – AHHHHHHHH.  Someone who isn’t a PCOS’er or struggling with IF who actually freakin’ GETS IT. 

I don’t know if it was the shock of having someone who admitted to thinking about being pregnant and getting a positive test result and having smooth sailing I LOVE BEING PREGNANT pregnancies who was also sensitive and mindful of those who are not in her camp – but I immediately blurted out that I was currently being treated for IF and just recently went through my third failed cycle and am about 2 years into this TTC journey.  It was like I couldn’t stop myself.  I also told her the story about how I had a dream in the beginning of this journey that my (our) hair stylist was my surrogate and I came in and told Mary and she was so honored and, to this day, I’d actually consider it if it needed to happen (and she would, too).  We went on to have a good 30-45 minute conversation about my journey and how hard it is and how hard it is for people to understand or even just to empathize with what you’re going through.  I commended her on being so thoughtful not only about her friends who are struggling, but on considering her body to help other couples.  It’s an extremely selfless thing to do and that showed me what kind of person she is.

I left the salon that night (4 hours later – OMG, seriously!) and not only did I walk out with a great color, cut, and blow dry – but with this new feeling of “coming out”.  I outted myself to a total stranger!  I have a hard enough time picking and choosing the friends and family in my life who know – but here I was in a hair salon dishing out my secret.  I give a lot of credit to those individuals who have no problem admitting to the world and everyone they personally know what they are struggling with – even now, I don’t think I could put a status update on FB, for example, that says “Krista is struggling with infertility and wants nothing more than to be a mom”.  I can write it all out here, quasi-anonymously or I can post on SoulCysters under a forum name, and I can keep an Email chain going with select individuals – but I can’t totally come out of the closet.  I admit it – I have that fear.  I have the fear of all the things that I often find myself feeling – the fear of being thought of as broken, worthless, sick and the stereotypes that go along with IF treatment such as that I’m destined to be an octomom.  I don’t want to be judged – I don’t want IF or PCOS to define who I am.  But it’s hard because, right now in my life, it is SO much of who I am.  And I find it remarkable that I could come right out and talk to a total stranger about it – but could never do that in my personal life.  So often we’re whispering about my situation, we’re coming up with excuses to tell people when they ask why we don’t have any children yet, and we’re trying to shove it all under the mat.  I often wonder which side of the fence is easier:  All out or All in?  Or where I am now – which is a mixture of both? 

Who knows what my next stranger interaction will bring me – maybe it will bottle me back up to where I only talk about it with “those in the know” or maybe I’ll inch that much closer to coming out totally.  Or, in the end, does it really matter?  I guess it’s about what makes me feel comfortable in the moment – but I can honestly say I often wonder how liberating it would be to scream it to everyone I know…

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So – I finally spoke with Dr. Zimon (after freaking out because I missed her call by literally a minute and then they were being ridiculous about transferring me directly to her when I called back).  She made me laugh with, “well you’re probably wondering what is going on…or actually what isn’t going on in there…”  She said people on Clomid sometimes have 35-40 day cycles, so I’m still right there in the middle of my cycle, but she really doesn’t know what is going on.  She is not concerned about my estrogen dropping (what I considered a drop apparently is what she considers staying the same).  She did say that sometimes PCOS women can have follicles that turn to cysts rather than grow as mature follicles and we’ll see if that is the case.  She thinks that tomorrow will show us some more information – I asked if tomorrow was the deciding factor and she said depending on what shows she may have me go in one more time. The good thing is she is the doctor on call so she will be the one actually looking at my results – that made me feel better. 

She did ask if I was getting frustrated with this cycle and I said a bit, but more because I don’t understand why it’s so different than how I responded the first time.  She admitted that she truly doesn’t know why this time is so very different but that it’s all sort of pieces to the puzzle.  I think she was going to offer me to opt out of this cycle if I wanted to but, goodness, I’ve come this far…what’s another round or two of bloodwork and u/s?

She wrapped up by saying that if this doesn’t work we’re going to have to sit and decide what to do next.  I asked what that typically entails and she said fertility injections – basically stronger drugs to help me respond. She knows I can respond as they confirmed ovulation last month so we just need to get there again.

Chris is probably going to lose his mind because he thinks the answer to “what do we do next?” is IVF.  Pray for me while I give him this update…

But seriously, Dr. Zimon is so nice.  She just is normal and not doctor-ish and as much as I may get frustrated that it’s like Ft. Knox to reach people there, Boston IVF is dedicated to its patients.  Nurse Karen really pulled through in arranging my conversation with her and it makes me feel better knowing that she, too, has thought about “what next?” if this doesn’t work out and she, too, sees that we need to fast track and get this done.  GET ‘ER DONE.

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Yesterday was my first appointment with Dr. Zimon and Chris went along with me.  It was a consultation so we met in her office and went over both of our medical histories, including family histories, etc…  After reviewing everything, she basically said the following:

– She is 99.99% confident I have PCOS.  Since there is no “test” for PCOS and based on my OB/GYN’s assessment as well – that is what we’re going with.  Apparently PCOS affects 10% of the female population.  That statistic shocked me.
– It appears I am a rare PCOS individual because most women with PCOS ovulate at some point – 35 days, 40 days, once every 2 months, etc…  I don’t ovulate (from what we could tell over the last year) ever.
– Based upon that – she candidly stated that it’s a wee bit difficult to get pregnant when you’re missing half of the puzzle pieces! 

So, she was confident in that all I need is some help ovulating.  The tests done previously show that my ovaries are not barren and are in good shape so I should have plenty of eggs.  We discussed my weight and I was the one to bring it up – she said I’m not obese and although it could help, it’s not where she thinks we need to focus our time.  That said, she doesn’t want me to stop doing what I’m doing and that it will be critical to continue to exercise throughout my pregnancy due to my risk of gestational diabetes.  That was a big relief as well – she told me to stop pressuring myself into a specific weight loss plan but to instead look at it as a health improvement plan and that 3-5 times a week at the gym like I’m doing is perfect. 

But, before executing her plan – she wants to do more bloodwork and an HSG, which is essentially a test where they shoot dye into your uterus and then take an x-ray to see if it could travel without issue through the fallopian tubes, etc…

Before leaving, we scheduled the next steps – which are based on cycle time.  The bloodwork had to be done on Day 3, which conveniently was today.  The HSG has to be done between days 5-12 so we scheduled that for next Thursday morning – and I have to go to Waltham for that procedure.  She also wanted to do a pelvic ultrasound to take pictures of my uterus and the follicles on my ovares and that has to be done on Day 3 as well.  Should everything come back clear – the plan is to try Clomid for 6 months (possibly in conjunction with some other meds) and see what happens.

I left the appointment feeling rejuvinated.  I know that sounds weird, but after being let down month after month for the last year – it is the perfect word for how I felt.  She was very kind and spoke in human terms, not doctor terms.  She immediately made both Chris and I very comfortable and that is so important to me.  The fact that she was so optimistic was also a great feeling – I won’t get hung up on it, though, because you do never know but it was another bright light in what’s been a dark year.

I decided to take some time after the gym while I was cooking dinner to have a conversation with Chris.  He was being a jerk about completing the paperwork and not really being supportive the night before, so I wanted to be clear about my expectations on his behavior going forward.  I was very calm and told him that he needs to think before speaking / acting (DUH) and that his actions from the previous night were really upsetting to me.  He apologized immediately and said that he didn’t realize all that was involved and that being in the doctor’s office and hearing about everything I have to go through, including a lot of pain, made him realize how selfish he was acting.  He said he wants to be here for every part and truly feels sorry that I have to go through all of this.  It was a very nice conversation and I feel much better – I know he’s going through a lot of change in his own mind with being in PA for the next 6 months and absorbing this whole infertility thing himself.  But, I don’t doubt that speaking with the doctor helped open his eyes to what lies in store for us.

I’ve very optimistic and hopeful.

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Based on the lack of success, my OB/GYN is referring us to a Reproductive Endocrinologist (RE).  She gaves us three to choose from and I solicited advice from my cousin Maria who has two friends who were successful through Boston IVF.  So, I have scheduled an appointment to meet with Dr. Alison Zimon who specializes in PCOS.

Wish me luck!

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