So Close

Infertility - is it worth it?

In the beginning, when you first start out trying to conceive you are filled with hope, optimism and excitement.  You smile secret smiles while you dream about your future. You have visions of blissful mother and baby moments, all soft lighting and beautiful music.

As the months and years go by, and as you face negative after negative, the dream soon becomes too painful to dream.  Instead of soft lighting and beautiful music there is disappointment, pain and fear that the dream might never become a reality. There is no vision, there is only a big question mark.

And so you go into self preservation mode.  The music goes off and the lights go dark and you start wondering if it is really worth it.  Perhaps that beautiful vision isn't real.  Perhaps you were fooling yourself all along.  Perhaps you don't really want this. Look at your life - your life isn't so bad as it is.  Maybe deep down, you don't really want children.  The pain of trying again and again seems too much.  Perhaps you should just give up.  You wonder whether it really is worth it.  

I asked myself that question many times.  After yet another negative, after yet another miscarriage.

Now that I am on the other side, now that I am 'living the dream', I want to answer that question for everyone who is where I was all those years ago, wondering whether they should carry on, wondering whether it is worth it.

It is worth it. It is worth it times a million.  It - being a mother / having children - is better than I ever dreamed it would be, ever hoped it would be.  It is also harder than I realized it could be - children make you old / fat / poor / tired / celibate / exasperated / grumpy / irritable etc, but even with all of that, it is so absolutely worth it.

There are so many wonderful, amazing things that I hadn't even anticipated - the togetherness you feel, the sense of purpose, the grounding, the kinship, the family, the entertainment, the laughs, the way they love you, the opportunity to view the world anew through their eyes etc etc, but the most mind blowing part is how much YOU love them.  The opportunity to love someone or something so completely, so unconditionally with every fibre of your being is what makes it worth it. It is a type of love I didn't even know existed, it is a deep, primal love that comes from the very marrow of your bones, from within the cells of your heart.  It is an all consuming, deeply powerful love. The opportunity to experience that kind of love is a privilege and an honour.  

There is no soft lighting or beautiful music, I don't know what I was thinking there!  More like florescent lighting and rock music on full blast, with the occasional thunderstorm and stuck record (me). It is crazy, busy, exhausting and so absolutely 100% worth it.

If you are in that place where picking yourself up and trying again seems almost too much to bear and you wonder if it is worth it, I want to tell you it absolutely is.  Times a million.

I hope that you get to find out for yourself soon.

Infertility and a question of ethics, rights, choice and professional duty

**Updated - now with a poll at the end of the post - pls participate in the poll**

I have a friend; a wonderful, wacky, clever, in-touch, out there, together, crazy friend who has been trying to conceive for several years.  At this stage in her life, at her age, the odds of her conceiving with her own eggs are very, very low.  As in less than 1%*. 

She had been trying for several years when she went to a fertility specialist who told her, in no uncertain terms, that she would need a donor egg in order to conceive.  

Being the type of person she is, she told him, in no uncertain terms, that she knows and accepts that she has very little chance of conceiving with her own eggs, but it a chance she is prepared to take, and she would like to go ahead with an IVF with her own eggs anyway.

He refused, she stormed out.

She carried on trying for a few attempts (with another doctor), which did not succeed and is now ready to move on.

So here is my question.  Does the doctor have a duty to refuse treatment that is highly unlikely to succeed – as in less than 1%, or is up to the individual woman concerned to decide whether she is prepared to take that chance?

In the doctor’s defense – the odds of it working are extremely low, surely he has a professional obligation NOT to waste the patient’s time, his time and her (lots and lots) of money.  Would he not be regarded as irresponsible on many levels for going ahead with IVF treatment?

In the patient’s defense – surely it is HER decision as to whether she wants to take her chances with the treatment.  This is elective treatment, and she elects to do it.  She is educated, she is fully aware of the facts involved, but she still wants to go ahead.

I am torn. I see this often in my line of work in the egg donor program.  Women who are over 45, who are otherwise extremely healthy and fit, and would make great mothers, but whose chances are, statistically, extremely poor of an own egg IVF ever working.  And yet they want to carry on trying, they NEED to carry on trying until THEY get to the point where they are ready to accept either moving on to donor eggs, or giving up trying all together. 

On the one hand, I understand.  It is a process; and you need to do it on your own time.  If it takes 1, 2, or 10 attempts with your own eggs before you are ready to move on, then that is what it takes.  That process of being emotionally and mentally ready to move on has nothing to do with statistics and everything to do with the individual’s own internal processing.

On the other hand, I see doctors treating 47 year olds with their own eggs, and I think – what a rip off!  How can any doctor in their right mind take the patient’s money and raise their hopes when the chances are so very very slim. Surely that is immoral?  How can you take that chance, offer that hope and take their money on a 1% chance?

And yet, is it the doctor’s decision to make?

I know lots of doctors, especially in America where stats are so important, refuse treatment on patients over 42.  They are too scared to have the failures as it messes with their success rates. 

But success rates aside, my question is this:  Is the doctor right to refuse to treat a woman who chooses to have elective treatment like IVF, where the success rates are proven to be extremely poor, or is it the patients right to elect to go ahead with the treatment, knowing full well what the facts are. 

Her money & her body vs his professional duty?

What do you think?

PS any nasty comments that get personal, will get deleted.

Edited to add (based on your comments to date):

1. This is not an insurance issue, I don't think

2. There is no greater risk to the patient (other than the risk of miscarriage) than there would be with a donor egg IVF.

* For instance at 45, there is a one percent chance of getting pregnant at all and then at least a fifty percent chance of miscarrying.

For more information on Egg Donation / Egg Donors in South Africa, please view Nurture Egg Donor program www.nurture.co.za

The Infertile and the Jinx Factor

Either the scars run deep, or old habits die hard, but even now, even with this au natural who-knew-sex-could-get-you-pregnant pregnancy, it is so hard to let go of the jinx factor.

 

When you are going through infertility, you have so little control over what happens – very little control over how your body responds and no control over the final result. You can try as hard as you can, and you still can’t influence the result. It’s a huge mindfuck, especially for the A types who are used to controlling their world, and who have always believed that effort = reward. 

 

And so, in order to try and wrestle some semblance of control, you (a) educate yourself with as much info as you can and (b) look for ‘signs’ every where. Even if before you merrily walked under ladders and laughed at black cats in your path, you suddenly become hyper vigilant for signs. A baby sticker on the window of the car in front of you as you drive to the clinic – IT’S A SIGN!! A song playing on the radio that you danced to as your first dance – IT’S A SIGN!! If you can’t find a sign, you make one up. Infertiles love signs.

 

The flip side of looking for signs, is fearing the jinx factor. The jinx factor reigns large. We live in fear of the jinx factor. After so many IVFs, pregnancies and losses, you would think that by now I would know that if something is going to go wrong, it is going to go wrong (because of perfectly logical, explainable MEDICAL factors), but no, I am still so fearful of the jinx factor.

 

Announcing that you are pregnant is hugely jinxy. But somehow, if you announce it with the right ‘tone’ (not too confident or boastful, instead full of gratitude edged with a bit of fear), it is less jinxy.  Working out your due date – very, very jinxy. Acting 100% confident / blasé / naïve / boastful about being pregnant – very, very jinxy.

 

Yesterday when I want for the CVS, I was comforting myself that it would be good because it was at a new doctor, not the one that did the CVS for the last pregnancy that turned out so bad, and that blah blah blah (looking for signs every where) and when the new doctor walked in, I immediately recognized her (and her me) from when I did the CVS with the quads – she was there that day assisting. I was completely stuck as to whether it was a good sing or a jinx. Brain melted.

 

As you know, we have a brilliant local online support site (Fertilicare) for local infertiles. I hang around the infertile boards giving people encouragement where I can, answering questions where I can and occasionally I lurk on the pregnancy boards. So yesterday I thought I would join them there, announcing my pregnancy and joining in the group. I opened up a new post, was about to start typing my news and then I shut the window down. I just couldn’t. Far too jinxy.

 

I know that my friends and family get, um, irritated is too strong a word, lets say ‘concerned’ that I am like this, that I am not 100% skippy happy, its not that I don’t want to, its just that I can’t. It is far too jinxy. I feel as if as long as I hold on to a little bit of the respectful fear, I am somehow am protecting myself and the pregnancy from the jinx.

 

As I said, the scars run deep and old habits die hard.

 

PS I have a few good signs that comfort me that just maybe this will end up ok, but I obviously can’t share them with you as that would be way too jinxy ;-)

 

PPS I really am ok, and even dare I say it, happy! This is just my way of dealing with the fear.  I am fearfully happy.  Happily fearful.  Actually just happy touched with a tiny, teeny bit of fear of the jinx.

 

PPPS Another really jinxy thing is to get all cocky about picking baby names, but I’ve always picked my names early so I might do the same.  Am going to ask you for help as this baby was practically conceived on this blog anyway. Don’t post your suggestions yet!!! Too jinxy. Only after Friday’s results. Then we will have the name discussion. Put your thinking caps on in the mean time.

Suffering from endometriosis?

Calling all endometriosis sufferers, please see this divine note from a blog reader below.  Please participate in this study, if you can as us infertiles need all the help we can get!!

I am writing to you with a professional request that I hope you will consider.  I work for a small US biotech company who has a clinical stage development program for the treatment of endometriosis. While I do not myself suffer from endometriosis, I have interacted through my work with many patients and quite aside from the impact on their fertility, I’ve been extremely moved by their pain and frustration in seeking treatment.  That is why I’m very proud to be part of an organization that may have something new to offer endometriosis patients.  As an aside, this treatment (an oral GnRH antagonist) has already resulted in several women in our clinical trials getting pregnant who had otherwise been infertile due to their endometriosis.   

One of our ambitious goals is to raise awareness of the magnitude of the problem in the US (we’ve collaborated with the Endometriosis Association towards this goal also), however our funding is limited so we are trying to be creative.  At the moment, we’ve just completed an important clinical study and would like use some of these results to gather thoughts from endometriosis patients.  We would like to conduct a market research study with women with endometriosis and ask them how they suffer from their disease, what are their thoughts on current treatment options, what success they’ve had with treatment, and their thoughts on a new treatment that we would describe. With these results we may be able to raise funding to continue our clinical work and actually bring this first in class treatment to market.  It is somewhat difficult to identify endometriosis patients, since disease awareness is low in the general population (and many women are undiagnosed), but I had an idea that perhaps among your readership and readership of other major infertility and endometriosis blogs we could obtain more than enough participation in a survey to get robust results. 

So darling blog readers, please read on and participate in this worthwhile study.  It is just a few questions that you need to copy and paste into an email and send off.  Yay! Love you, mean it.

IVF Survey

Are you going through IVF treatment? If so, take the IVF survey, sponsored by MomLogic.com, Redbook and the National Women's Health Resource Center. Make your voice heard!  Launch the survey here.

Feeding the beast

It has a strange allure, this yearning of mine. Like most addictions, you are never fully cured. Recovered perhaps, but never cured.

Even now, three years later, the slightest reminder gives me that familiar wrench inside. I pretend to be totally over it, I act as if I couldn’t care less. Nothing could be further than the truth.

The craving is always there, lurking under the surface. I pretend to fit in, to be ‘normal’, whatever that might be, but I know I am not. I never will be. It is impossible to deny my past, even if my present looks so rosy.

I dream about it, about doing it one more time. I rationalize it to myself. Many people do it and few have regrets! I won’t go for the heavy stuff again, I’ll just flirt with the fun stuff, the easy stuff! It’s not like I will slip back into that terrible, dark place again if I just do it for fun!

Except that I know I am fooling myself. I won’t be able to stop. I won’t be able to do it just once, or just twice. That is how I started last time and look where that ended up.

‘I’m fine’, I keep telling myself. Look at how great my life is now!

But I want more. I crave more.  I want it, I need it.

It would be so easy. Just a phone call. All I have to do is pick up the phone and ask to see him again; I will be right back in that world again. As if I had never left.

God, just once more! Just let me do this once more and I promise I’ll stop. Just one more IVF, one more chance at a baby, and then I promise you, I’m done. Just one more.

(cross posted from my Times column)

I should make it clear, this is not something I am asking of anyone - of my husband, or anyone else.  It is instead a conversation I am having within myself. A to-and-fro between my heart and my head.  Sometimes, most times, my head wins. As it should. It is the right decision.  But every now and then sound of my heart's yearning drowns out all the neat rationalizations I use to convince myself that I'm done.  That I am happy being done. It is the right decision. Even if it is tinged with much sadness and regret. It is just how it is. 

The importance of good bedside manner

From what I have read and the little I understand about healthcare in other countries, it would appear that we have a different approach to the kind of service we get from health professionals in this country. And by ‘we’ I mean the privileged few like myself who can afford private medical care and who don’t have to stand in long queues at Government hospitals.

I suppose it is different here because we don’t get told who to see or when we can see them, we decide who we will see and the wait to get an appointment is seldom long at all. Here in South Africa, the level of service you get from the private medical profession is outstanding. The patient is the customer and as paying customers we demand a high level of professionalism and care from our doctors and support staff. And if we don’t like it, we will go to someone else. For those who can afford it, the care is of the highest quality professionally and medically as well.

However, no matter where you are in the world, no matter if are paying for it yourself or you are on some kind of national health service, the one thing that makes all the difference between a positive experience and a negative one is the caregiver’s bedside manner. And this is seldom more important than in the case of infertility care.

By the time you go to see a fertility specialist, you are in a pretty crappy place. You’ve probably been trying for a quite a while, 17,000 people have seen your vagina and your husband has had to ejaculate several times into a tiny bottle and have the results scrutinized by 10 laboratory folk who come back with a big ‘NOT GOOD ENOUGH’ stamp on his report card. You are feeling beaten down, broken, desperate, worthless.

And then you go to your first appointment at the fertility clinic where at the end of the day, the procedures, treatments and prices are pretty similar. There really are only so many ways to do an IVF etc. What makes a difference between a positive experience where you leave feeling full of hope and confidence and a horrible experience where you feel like a worthless piece of shit is how you are treated by all the people you come into contact with. The way they greet you, the way they treat you. The way they answer your questions and allay your fears. The patience they show when they explain the same procedure over and over again. How they remember your name if you’ve been there 75 times before. When they ask you how you are first, before they ask you for your credit card. All those things that can be collectively described as ‘bedside manner’.

So important!!

Which is why I have chosen it as my topic when I speak at the South African Fertility Sisters conference in two weeks time.  Once a year, all the fertility support staff get together to have a conference and chat about all the different aspects of their job. It is a great idea and I am honoured to have been invited to talk. My topic is “The importance of good bedside manner”

This is where you come in – I would love your input into this topic. Help me put together an interesting, useful talk on what the fertility nurses and support staff can do to make our lives easier. How would we like to be treated? Tell me about a positive experience you had and what made it so wonderful. Tell me about a negative experience you had and how it made you feel.  Help me tell them what type of ‘bedside manner’ we need to make this horrible experience of infertility just a little easier to bare.

PS Have a peak at my first new project - Fertilicare. Fertilicare is an outstanding Infertility Support site, with a very active online support forum for South Africans who are going through infertility.  All the hard work was done by my partner Maritza who is probably one of most talented people I've met.

Closing Shop

(bodily functions and faulty reproductive bits mentioned)

I’m having a bit of a dilemma. Which is putting it mildly. I am not sure whether to shut the factory down for good, or keep it chugging along in its pitiful, yet marginally functioning state. 

If things were normal, if *I* was normal (cue hysterical laughter here), then I might be happy to let things chug along as they were and see what happens. But things (my body and I) are far from normal and so I feel like I need to make a decision either way. Which really sucks and makes me feel a renewed sense of frustration, irritation and mourning for the sorry state of affairs of my reproductive bits. 

I need to decide whether I would like another child, or whether I should go back on the pill / Mirena and put a final full stop at the end of ‘Mommy, Daddy, Adam and Kate.’

There is a part of me that would LOVE to conceive naturally and be pregnant with ONE baby. A big part. I have been so cheated of any ‘normal’ conception and pregnancy experience, plus I haven’t ever had a chance what it feels like to hold just one baby. To focus all your attention on ONE baby. So yes, there is a part of me that would love to have all of that. Plus I like the idea of a big family. I come from a big family.

But do I want another child? Children are expensive. They are exhausting. It has been a rough first two years with the twins; I am FINALLY seeing the light at the end of the tunnel. Do I really want to go through this again? 

And what about the very high chance of another loss? Can I handle yet another loss? What about the wear and tear on my body that pregnancy brings? I have been pregnant five times already. I am not sure my body and mind can handle any more.

It is not just the psychological and emotional limbo, I can handle that. Hell, I’ve been handling that for eight years now. Plus I don’t have the same sense of angst anymore, obviously. It is more a case of “would be nice, but not heartbreaking if it doesn’t happen”.

Another factor that is coming into play is my age. I will be 39 this month. OMG! How the fuck did that happen? Woosh! The sound of the years between 27 and 39 just racing by. I swear I was 27 only last week sometime! I am not sure I want to have another child at 40+. Not because I think there is anything wrong with being an older mother (in fact, I think there is a lot to be said for waiting a little), but because I am feeling my age. I feel old, and very very tired. Both my kids, but especially my son, take up so much of my energy that I am not sure I have it in me to have another one. What if it too is a non-sleeping, hard-work child! So, yes, the age thing is something I am considering. I am not sure what the cut off point would be for me, but it feels soon’ish.

The thing that is driving me to make the closing-shop decision sooner rather than later is that my cycles are completely wonky and it is driving me crazy.  I have loooong cycles and I take forever to stop bleeding. Sorry if TMI. (It is as if my body doesn’t have the hormone necessary to say “ok, you are done with your period, you can stop bleeding now and make eggs or a lining or whatever the fuck normal people make” My body gets stuck on repeat. No period………no period………no period………no period………no period………no period………no period………no period……… PERIOD!! Periodperiodperiodperiodperiodperiodperiodperiodperiod.  

I hate living like that. It wears me down and I actually want to reclaim my body back. Go back on the pill to force my body into a proper cycle (and stop the bleeding), or go on the Mirena and have no cycle at all. Even better.  If my useless reproductive bits (including those spectacularly ineffectual hormones of mine) aren’t doing anything except annoy me, why bother keeping them functional? Why not just shut them down for good and move on with my life. Eight years is a long time after all. And I do have two wonderful children. So why not just shut it down and move on?

Because I secretly think I want another child. And because dammit, I want my chance at normal. And because putting myself on birth control goes against every infertile bone in my body. Plus, my body has done it before. Conceive. Four times with a lot of medical intervention and once where, in a rare moment of planetary alignment and supernatural luck, the forces combined to ensure that there was an egg, a willing sperm cell with a keen sense of direction, a couch and napping children all at the same time. Of course that pregnancy ended really well, but the point is that with enough divine intervention and thinking of England, I apparently can conceive on my own. Do I really want to close off that tiny chance?

And yet, I feel as if I must make a decision. I want my life back and my body back.  (My mind is long gone) It is so unfair though. That I have to make this decision. Makes me cross all over again. Infertility: The gift that keeps on giving. It is amazing how something that other people don’t ever give a passing thought to can cause so much anguish in the lives of others. Sigh. 

Anyway, if you were me (aren’t you thankful you aren’t!), what would you do? Shut the factory down and get on with your life or keep the rusty machinery going just a bit longer. Just in case? What say you, oh wise and wonderful ones?

Infertility Support Group Meetings - CPT and JNB

JOHANNESBURG 3rd SEPTEMBER:

"We have survived the winter, please join us for our first Spring Support!  Meeting taking place in Johannesburg, Hurlingham/Sandhurst Area from 6-8pm on Monday the 3rd September.  Please RSVP to either: [email protected] OR [email protected]

Hope to see you there"

CAPE TOWN 8th SEPTEMBER:

Its time for our next Cape Town Stork Sisters get-together.  If you feel, like me, in desperate need of helpful information, as well as some encouragement, support, and genuine understanding, please keep your diary open for this one. Kindly pass on the invitation to any friends struggling with infertility who may not be on our mailing list. 

 

Vicky, the acupuncturist of "So Close" fame, has kindly agreed to come and spend some time with us on a Saturday afternoon in September, to tell us more about the potential value of acupuncture for infertility or during infertility treatment.  Tertia and others from previous meetings will be there to support and share a glass of wine/juice (or two).

 

Date: Saturday 8 September 2007

Time: 13h00

Venue: Will be confirmed upon RSVP, but suffice to say that one very kind super stork sister is (again) opening up her heart&home to us

What to bring: We're trying to keep it low maintenance, so would like to ask that each person brings a snack or two (~ as much as you would eat yourself) and something to drink (~ as much as you would drink yourself). We'll throw the whole bunch together and voila...! snacks & drinks!

RSVP to [email protected] 

Cape Town Fertility Support Group get togethor

Keen to bond over pizzas and wine (or juice, as is your preference)? 

Venue: Colcaccio at Canal Walk

Date: Thursday 2nd August 2007

Time:  7pm

You are welcome to eat and drink whatever you want - but please be responsible about settling your bill before you leave!!

Please RSVP to Sue at sue at fcbct.co.za