The Waiting Game

As soon as Anna was born safe and sound, I knew I wanted to try again.  I wasn’t sure what I meant by that as I couldn’t imagine putting the four of us through infertility again, yet I understood that the inevitability may well have been out of my hands.  And time was not on my side – I was 38 with very high FSH.  I knew I would breastfeed exclusively for at least six months as I didn’t want to sacrifice one real baby for another that might never be.  And yet, as the weeks went by, I couldn’t stop thinking about the return of my (in)fertility – when I would start seeing signs, what I could do to speed it up and how I would feel about it when it happened.  I regularly googled various combinations of “breastfeeding”, “fertility”, “ovulation” and “pregnancy” but I couldn’t find any definitive information and very little anecdotal evidence from anyone who knew much about fertility signs and charting cycles.  I can’t imagine there are many people who chart their fertility signs in the early weeks postpartum while breastfeeding exclusively but I am one of them so here is my story for anyone else who may be in the same unusual situation.

When Anna was eight weeks old, I noticed some EWCM.  I got an instant rush of excitement and, while recognising all the danger signs, threw myself back into the business of babymaking.  I was very surprised to see a rise in my LH levels, although my OPKs never became positive.  Still, there was a surge, accompanied by further EWCM, so I persevered accordingly.  Nine or ten days later, I did a HPT – negative.  I was disappointed, of course, but positive about the fertility signs.  No period followed.  A couple of weeks later, the same thing happened.  I temped after the surge – no rise for several days.  In fact, my temps were quite a bit lower than usual, ranging from 35.4 to 35.9 – pre-O temps were previously 35.8 to 36.3 and post-O temps were 36.3 to 36.9.  A couple of weeks later, more EWCM, almost positive OPKs, and this time also ovulation pain – but again followed by no temp rise.  I should mention that Anna was a good sleeper from a few weeks old and at this stage was usually sleeping through the night.

This pattern continued every couple of weeks for the next three months of so with my fertility signs becoming more pronounced each time.  My body was clearly gearing up to ovulate, even to the extent where I was having strong pains in my ovary, but no egg was being released – or at least, no progesterone was being produced by  a corpus luteum.  My OPKs were so very nearly positive that I marked them as positive on Fertility Friend, just in case I had missed the LH peak.  I temped on and off throughout October, November and December 2008 and, while there were peaks and troughs, there was no discernable pattern and my temps remained lower than usual.  I was concerned that the “almost but not quite ovulating” might be a sign of perimenopause but I was still breastfeeding exclusively so had to put those thoughts aside for the time being.

In December 2008, when Anna was 6 months old, I introduced solids and 2 bottles of formula during the day – I still breastfed morning and evening and during the night if she woke.  Then, in early January (7 months postpartum), I had several days of EWCM and very positive OPKs two days in a row.  A sustained temp rise followed (hurrah!) for 7 days, followed by a drop and a bleed on 8dpo.  The next cycle, I had 12 days of EWCM, O on day 21 and another 7 day luteal phase.  I know the first cycle or two postpartum can have very short luteal phases but this was a return to “normality” for me so I felt I should do something about it or I would have no chance of sustaining a pregnancy.  I had already called the clinic and had a prescription for Clomid ready to go but had been advised to stop breasfeeding completely first.  I wasn’t ready for this decided to use some leftover HCG that I had in the fridge during my next cycle.

On the morning of CD18 of my 3rd postpartum cycle, I had a very positive OPK.  I injected 5000iu HCG into my tummy straight away and felt the familiar buzz of empowerment, that I was doing something to help things along.  I had no reason to feel so positive but I did.  My husband did too.  I suppose it was that we were in the first flush of TTC, like normal people.  11 days later I got a +HPT.  I am now 30 weeks.

In my postpartum googling, I never found a documented case of the step-by-step return to fertility whilst breastfeeding.  My story does show it as a gradual process, with ovulation only occurring once full-time breastfeeding had ceased.  However, one person does not a study make so I would be interested to hear from anyone else who had a similar (or a disimilar!) experience.

Last week the HSE issued the following statement to clarify the rumours that IVF meds were to be taken off the Drug Payment Scheme (under this scheme no individual or family pays more than €100 per month for prescription medication):

The HSE transferred a defined list of fertility medicines to the High Tech Scheme in March 2009. Unlike the Drugs Payment Scheme, the High Tech Scheme does not incur any markup but pays the pharmacist a patient care fee. Not alone did this transfer provide savings for the HSE, but it also enabled improved governance arrangements to be put in place.

The HSE indicated in its letter at the time to prescribers in registered fertility clinics that it considered three full cycles of IVF an appropriate benchmark for funding. Some established clinics in Ireland already operated such a benchmark to avoid hyper stimulation of the ovaries, which can have serious consequences for the lady.

Obviously, there has been outrage about this proposal.  IVF meds will now go up from €100 per cycle to about €4000.  It means the end of fertility treatment for many.  It seems the HSE has decided to hit a vulnerable group of patients in the hope that public opinion will not be on their side and the cuts will go largely unchallenged.  Their “reasoning” is so flawed, it makes me wonder if there are any medical people working within the HSE – I know of no clinic that operates a 3-cycle limit and the risk of hyper-stimulation of the ovaries has got nothing to do with the number of cycles a “lady” undergoes.  

Also, what does “three full cycles” of IVF even mean?  What if I don’t make it to egg retrieval?  Or embryo transfer?  What if I am doing an FET?  If I have had three cycles of IUI on a high dose of FSH (that would be me, the poor responder), does that mean I have used up all my goes?  In fact, as a very poor responder with zero risk of OHSS, shouldn’t I get unlimited goes?

I have written to the Irish Times to highlight the situation – letter is in today:

Madam, – The news that the HSE is to start making certain medications unavailable on the Drug Payment Scheme has come as a huge shock to those who could not otherwise afford necessary medications.

The first victims are infertility patients, who have been hit with the news that they will have to pay the full amount for IVF drugs if they need to have more than three rounds of treatment. This amounts to approximately €4,000 per cycle of IVF, up from the current monthly cost of €100, making fertility treatment unaffordable for most.

To add insult to injury, the reason the HSE has given for this – to avoid the risk of hyper-stimulation of the ovaries – is completely inaccurate and unrelated to the number of fertility treatments a woman undergoes.

What right does the HSE have to single out one particular group of patients and refuse to pay for their medication? Who will be next? – Yours, etc,

This is not just about infertility patients and whether or not the State should fund IVF (the State doesn’t pay a penny for any fertility treatment, apart from the funding of medication on the DPS). If the HSE is successful in targeting IVF patients, who will be next? Those who suffer from drug and alcohol-related illnesses? The mentally ill? If this becomes a political football, it can only end in one group of patients being pitted against another in a bid to fight their cause. It just cannot be allowed to happen.

Please sign the petition against these cuts.

Irish Independent, Saturday 27th June 2009

Many couples take having children for granted, but Fiona McPhillips found a different reality that included miscarriage, infertility and, finally, children

By Fiona Mc Phillips
Saturday June 27 2009

No couple expects to be in for the long haul when they start trying for a baby. It is supposed to be a time of great hope and anticipation, when you plan excitedly for your new lives together. It is true that having a baby changes your life, but not having one changes it so much more. Sadly, this is something that one in six couples will find out.

This wasn’t supposed to happen to me. I had a child, conceived without any problems. We were good at this. When we started trying again, I did conceive after a few months but miscarried. I had known how common miscarriage was (approximately one in four pregnancies), but I wasn’t prepared for the onslaught of emotions it would bring. I felt angry, cheated, desolate and so, so sad. Everyone said I could try again, but I wanted that baby, the one that would be born on that due date.

When you lose a child, you lose your future. It doesn’t matter how long your baby has been with you, you feel the gap that their death has left behind. From the moment you know about your baby, you plan their future — your future, together. You work out the due date, pick names, imagine who they will look like. When these hopes and dreams are taken away, it often seems like you are expected to forget you ever had them. I couldn’t forget for one second and I knew that, for me, the only cure for miscarriage was another pregnancy.

If I had been eager for a baby before, I was desperate now and trying to conceive (TTC) became all-consuming. I started a blog and originally called it The Two-Week Wait. The two-week wait is the time between ovulation and when you can test for pregnancy — that’s how long I expected to be writing the blog for. Well, two weeks came and went, and another, and another and, before I knew it, I had unwittingly documented the slow descent into infertility.

A year after our first miscarriage, an IUI (intrauterine insemination) yielded success but the baby died at three months gestation. Further IUIs were fruitless, so we moved on to IVF (in-vitro fertilisation). Two IVFs and two further miscarriages later, we were running out of options physically, emotionally and financially. We were lucky enough to conceive naturally twice more, but lost both babies. Finally, with the help of all of the fertility and miscarriage support drugs available to (wo)man, we conceived our daughter and carried her to term. There are no words to describe how lucky we feel.

I always wanted children, lots of them. Although infertility was one of my greatest fears, it was not something that bore heavily on me — at least, only to the extent that I didn’t want to put off having children for too long, just in case. I didn’t know anyone who was infertile, so I could only guess at how hard it might be.

I didn’t have a clue. My guess only extended to the long-term pain a couple might feel about not having a child in their lives. Thanks to television, many people assume that there is a once-off diagnosis that a couple has to deal with, and that they are then free to return to their lives and reshape their future without their much-wanted child. If only it was that easy.

It is very difficult to explain the cumulative effect of month after month, and year after year, of hope and disappointment, without making it look as though you are just not coping very well with TTC, something most people breeze through. After a while, everything hurts — other people’s bumps and babies, anniversaries of failed cycles and lost babies, and every new birthday, Christmas and Mother’s Day you face with empty arms.

There is a huge lack of understanding of infertility in the outside world. It is just not viewed as one of the very bad things in life. A common reaction is, “Why can’t you just be happy with what you’ve got? Focus on all the good things in your life”. When you can’t have a baby, nothing else matters. It is not possible to forget about it, channel your energy elsewhere, take up a hobby. The desire for a child goes beyond the desire for the joy that a child brings — it is a primal, uncontainable urge that overpowers all reason. Yes, I had a child and yes, I knew how lucky I was — nobody knows that more than an infertile person. And yet the thought that I might never carry another baby, that my son might never have a sibling, was unbearable.

Infertility is a very difficult and painful struggle. The research of Dr Alice Domar, professor at Harvard Medical School, suggests that the stress endured by infertility patients is comparable to that experienced by people undergoing treatment for cancer and Aids. A 2004 study found that 40pc of infertile women suffered from depression, while 87pc had anxiety.

I was one of the 40pc. I stopped socialising beyond what I considered absolutely necessary. I could go through the motions of a wedding, a christening, a birthday dinner; I just didn’t want to. The day itself wasn’t usually that bad, it was the anticipation that was the killer — the fear of announcements, of the blithe conversations about pregnancy and kids, and the terror of the platitude.

“I just know it’s going to happen for you soon.” “Don’t worry, it could be worse.” “It’s God’s will.” “Why don’t you just adopt?” And the old chestnut: “Just relax and it will happen.” If there is one piece of advice I can give to those who have friends and family members suffering from infertility, it is that it is better to say nothing at all than to say the wrong thing and risk upsetting your loved ones. If you feel awkward and don’t know what to say, then just say sorry, and give the person a hug if you feel it is appropriate. And one more thing, if I may: stress does not, I repeat, does not cause infertility, but infertility sure does cause stress.

I dealt with my stress by writing. I wrote on internet message boards, I wrote my blog, I wrote my book. I wrote comebacks to insensitive comments in my head while in the shower or on a bus. Sure, I was obsessed, but I decided to channel that obsession into spreading the word. If I couldn’t have a baby, I was going to try to make sure that some good came of the whole sorry mess. And along the way, I met some wonderful women who listened to my rants and kept me sane, and I hope I did the same for them.

The greatest piece of advice I can give to those battling infertility or recurrent miscarriage is to talk to others in the same boat. The easiest and least intrusive way of doing so is to join an internet forum for those who are at the same stage as you, or facing the same obstacles as you. The Irish Infertility Support Forums — set up by Helen Quinn, who has been there, done that (www.irishinfertilitysupportforums.ie) — is a caring and supportive community of women (and a few men) who are dealing with all aspects of infertility. It is also an invaluable resource for information on local fertility clinics and services.

For those who would prefer to meet other women or couples face to face, the National Infertility Support and Information Group (NISIG) can put you in touch with your local support group. You can reach them online at www.nisig.ie or call them on 1890 647444.

Finally, it is important to remember that most couples do go on to have a child, one way or another. My doctor once said to me, “Brave women are generally rewarded”. There are no guarantees, but it can and does happen — even against the greatest of odds.

Fiona McPhillips is the author of Trying To Conceive: The Irish Couple’s Guide, (Liberties Press). See also www.makingbabies.ie.