The ethics of ICSI – Intra Cytoplasmic Sperm Injection

May 31, 2015May 31, 201516 Comments

ICSI for unexplained infertility

I felt pretty well versed and comfortable in the ethical debate behind IVF, well, so I thought until we came across ICSI. Intra-Cytoplasmic Sperm Injection (ICSI) was recommended by our doctor because we have been diagnosed with unexplained infertility. She explained that this procedure is worth trying because in our case of unexplained infertility there could be a chance that there may be something in the fluid surrounding my eggs preventing fertilisation. ICSI overcomes this potential problem by injecting a sperm directly into the egg, avoiding the fluid. It is important to note that with unexplained infertility there could be many other reasons unknown to us why we have not been able to get pregnant yet; we just can’t pinpoint the exact cause at this moment. By performing ICSI (for a few thousand dollars more) it slightly increases our chances of success. I have been looking into the evidence behind unexplained infertility and ICSI and the jury is out on whether it is worth while or not. Despite the mixed reports on the internet, I trust our doctor, and as our fertility clinic is attached to a medical school I like to think that they are up to date on these things.

I hadn’t thought much about ICSI previously because Chris’s sperm is pretty good, I didn’t think it was on the table. So I hadn’t read much about the procedure. As I began to read up on the procedure, I started to think more about the ethics and morality of it. Selecting the ‘best looking sperm’…is it any different to selecting the ‘best looking egg or embryo’ as would be the case for normal IVF? And so I decided to look into it a bit more to understand what ICSI really is, and the considerations for and against this artificial reproductive technology procedure.

This post is just me putting ideas out there and exploring the issues, I do not necessarily agree with everything written here. I may have been unintentionally selective or biased in some of my arguments, there are probably many more arguments for and against ICSI, so please feel free to comment and add at the bottom of my post.

What is ICSI?

ICSI – Intra Cytoplasmic Sperm Injection is an in-vitro fertilisation procedure that has been in use since 1992. Fertilisation is achived by the direct injection of a single sperm into the cytoplasm of the egg. The sperm can be extracted from fresh or frozen ejaculate, as well as being extracted directly from the testes (yikes, sorry guys, doesn’t sound fun at all). The egg is prepared to facilitate penetration of the sperm. The preparation of the egg includes enzymatic treatment and micro dissection of the cells which surround the egg. Injecting the sperm bypasses the normal interaction it would have with the egg upon first encounter. The deliberate selection of sperm for the procedure involves an assessment of selection criteria including: size, form and mobility of the sperm. Despite the selection criteria, there is no guarantee that the sperm is actually ‘normal’ and therefore, there is no guarantee that fertilisation will occur. It is even possible to select X or Y sperm to select gender, but only few fertility clinics offer gender selection for when it is necessary to avoid a known genetic disorder being passed. I have also read about some fertility clinics offering gender selection if the family has one child already, and they want to ‘complete the family’ by selecting the opposite gender of its sibling. This totally blows my mind. After the sperm is injected into the egg, the egg is placed in an incubator and checked the next day for fertilisation. If fertilisation is successful, the embryo is left for 2 or 3 days and then a decision is made whether to transfer the embryos back into the woman’s uterus for the next stage implantation.

Statistically speaking, there is evidence that ICSI slightly increases the pregnancy rate (but not statistically significant) compared to normal IVF. The spontaneous abortion rate with ICSI is slightly lower, but this maybe as a result of the younger age of the mothers and the absence of female-related infertility. The frequency of multiples is about the same (probably because the policies for number of embryos transferred remains the same). The statistics for randomised trials of normal IVF v ICSI show that there is no significant difference. Some researchers suggest that ICSI should only be reserved for the use of severe male factor infertility. However, the use of ICSI is on the rise and becoming the new normal as infertility clinics like to reduce the risk of failure for the patient. I can understand why that little extra % chance all adds up.

Ethical and moral considerations of ICSI – the arguments pro and against.

All ethical debates relating to IVF still apply to ICSI. But ICSI may be considered effectively as a further layer of ethical debate because we are potentially further ‘messing with nature’ by selecting one single sperm. Often Pre-Implantation Genetic Diagnosis (PGD) will be part of ICSI, where there is a screening of cells of pre-implantation embryos for the detection of chromosonal disorders before an embryo transfer. We are not doing PGD. This can also add a further level for debate.

I will start with what I have found regarding the pros of ICSI, and other Artificial Reproductive technologies, followed by the against arguments…

Pro ICSI: The right to procreate. To want a child is probably the most legitimate need in the world. The right to found a family is one of the most important human rights as declared in the Universal Declaration of Human Rights (948, Article 16.1) ICSI enables and supports this right.

Pro ICSI : Genetically related offsping. Before ICSI was possible, couples with male infertility would likely have resorted to donor sperm, or due to religious or personal beliefs would have rejected the use of a donor and remain childless. With ICSI, it is possible for couples to have a child that is genetically related to them that previously was not possible.

Pro ICSI: Reducing the risks to the couple. If natural IVF was chosen over ICSI the woman may be unnecessarily putting herself at increased risk, physically and mentally for both partners. For instance, if natural IVF were to fail first time round, ICSI may have prevented failure. There are no guarantees, but as a couple puts themselves through multiple rounds of IVF, the physical and mental stresses increase, including the financial burden.

Against ICSI: The risks to the child itself. There is much debate about the use of ICSI in male infertility and associated genetic abnormalities. Chris does not have male infertility, so the risk of genetic abnormality is supposedly lower. But the case for natural selection is negated with ICSI, there is no competition as would be with natural fertilisation, the chosen sperm may be a factor in genetic malformation. There is also a risk of choosing a sperm that is immature and may interfere with the process of genetic imprinting and could result in growth retardation and functional disorders. However, there has been little evidence to support these concerns. Having said there is little evidence, ICSI has been around only since 1992, so children born from ICSI have not reached far into their adulthood and so studies are limited on the long term health related issues of ICSI born children. Not to say the least, that the long term generation effects of ICSI on the population overall are not well understood and are only theorised. For example, will infertility be passed? In itself, will ICSI simply contribute to further medicalising in the future?

Against ICSI: Multiple Embryos. With IVF, to give a couple the best chance for a pregnancy multiple embryos are produced, grown, and then implanted into the uterus. Some embryos may be discarded if they aren’t of good enough quality to present a healthy chance of pregnancy. ICSI increases the likelihood for the generation of surplus embryos. For some people, each embryo represents a life and so the disposal of embyros is considered in the same light as abortion.

I found one eloquent and well articulated argument that explains why some people are against multiple embryos “Where doubt exists on the level of fact, the integrity of conscience requires that the presumption be in favour of the life. There is a classic example, if a hunter hears a rustling noise in the bushes, and is unsure whether it is a deer or another human being, he must assume it is a human being until such time as he can establish that it is not. Similarly we may accept the argument that there is scientific uncertainty as to the precise moment when an individual human life begins. That uncertainty, however, does not remove the obligation of care and respect for what certainly has the potential to become, and may already be, a distinct human individual.”

Against ICSI: Human Error. I have read about people worried about sperm/eggs getting mixed up in the laboratories. We learned that sperm is dyed a certain colour for each patient so there is no confusion – this was why Chris’s sperm was purple!! But to err is human after all and so are we potentially increasing the risk for a morally complex problem?

Chris’s purple sperm

Partial ICSI – overcoming some of the issues at hand? Partial ICSI is where some of the eggs are left to fertilise ‘naturally’ in the petri dish as with normal IVF, and the rest of the eggs are injected with individually selected sperm as ‘back up insurance’, just in case normal fertilisation does not occur naturally.

There are many different valid and understandable viewpoints about assisted reproductive technologies like IVF and ICSI. I am the type of person who respects others’ viewpoints and tries to understand as much as possible all sides of an argument. I am an analyst by profession so I like to think I am good at that. We have decided to do IVF and ICSI knowing these issues. I just hope that others can equally respect our decision for IVF and ICSI. But I now feel suitably versed to think about some of the important ethical and moral issues surrounding these artificial reproductive technologies.

Other notes and interesting references

On a side note, I found an interesting statement as I was researching that I wanted to share with you, it is about IVF and women’s rights in general. Mary Anne Warren, (a philosophy professor who wrote a lot about abortion and criteria for personhood) wrote:

“If women’s right to reproductive autonomy means anything, it must mean that we are entitled to take some risks with our physical and psychological health, in the attempt to either have or not have children. Neither abortion nor many forms of contraception are entirely safe, but women sometimes reasonably judge that the alternatives are even less desirable. Having a wanted child can be as important a goal as avoiding an unwanted birth.”

Other references which discuss some of the more interesting medical facts than I am not willing to describe in my blog as I am not a medical professional or just interesting…

Potential Health Risks Associated to ICSI: Insights from Animal Models and Strategies for a safe procedure, Front Public Health. 2014. 2: 241. Accessible here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4235077/

Ethics of Intracytoplasmic Sperm Injection: proceed with care, Wert, G.M., Human reproduction, 1998 vol 13 (1) Accessible here: http://humrep.oxfordjournals.org/content/13/suppl_1/219.full.pdf

Dealing with uncertainties: ethics of prenatal diagnosis and preimplantation genetic diagnosis to prevent mitochondrial disorders, Human reproduction update, 2008, vol 14 (1), Accessible here: http://humupd.oxfordjournals.org/content/14/1/83.short

Ethical issues in Assisted Reproductive Technologies, a presentation by Effy Vayena: http://www.gfmer.ch/PGC_RH_2005/pdf/Ethics_IVF.pdf

Ethical issues arising from the use of Assisted Reproductive Technologies, Dickens, B.M., Accessible here: http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.195.8966&rep=rep1&type=pdf

You might be upside down, but you’re gorgeous to me dear Uterus

May 27, 2015May 27, 20154 Comments

I have been told by several doctors that I have a beautiful cervix, and today I discovered that my uterus is just as “gorgeous”. Well these were the exact words of my Reproductive Endocrinologist (RE)!!!

Today was my hydrosonogram (also known as a Saline Infusion Sonogram). This procedure was the final test I required prior to our IVF treatment. The hydrosonogram is a procedure where the doctor inserts a catheter into the uterus and injects saline into the uterine cavity whilst performing a transvaginal ultrasound. The water shows up as dark black on the ultrasound against the white endometrial lining. This allows the doctor to look for smooth edges of the uterine cavity. If the ultrasound shows an edge that is not smooth then these rough and lumpy edges maybe polyps, fibroids or scar tissue which could be a possible problem for embryo implantation.

The procedure in itself was an interesting experience. Greedily, I had three doctors in the room as well as the nurse! The three doctors were: my RE, the doctor whose name I can’t pronounce and performed two of my IUIs, and one of the male student doctors Chris conversed with at our last IUI. I wasn’t quite sure if my RE was overseeing the procedure, or she had called in the other doctor because she was more familiar with my cervix and therefore inserting the catheter. Either way, there were a lot of people clambering around my vagina in this one tiny examination room. It was rather amusing.

First the doctor with the unpronounceable name inserted the speculum, and then peered up from between my legs and showed me the ‘flexible’ catheter and said, “remember this? Was it this one we used before?”. Ummmm….. “I think so??!!!” I replied. How am I supposed to know these things???! When she inserted the catheter I could hardly feel it at all. The speculum was removed with the catheter still in, and then she inserted the vaginal ultrasound ‘wand’. We could see the catheter on the screen, there was a lot of excitement amongst the doctors. The nurse was tying to hold something in whilst the two female doctors discussed tactics of why it wasn’t distending with the saline, perhaps the catheter was up against something, my uterus wall…or perhaps it was bent somehow. Either way, when they removed the magic wand, the catheter came out. They apologised and said they would try again. So back in the speculum went (this was only the painful part, no different to a pap smear), the catheter went back in, speculum was removed, magic wand went back in. And there was a gaggle of excitement as this time it had clearly succeeded; the saline filled the uterine cavity and I could quickly see there was a nice oval shape, with no rough edges on the screen. My RE told me my uterus was “gorgeous!”. She took a few shots on the screen, and showed me in 3D my uterus. With this image it actually looked more like a normal shaped uterus that you see in biology books rather than what I saw on the screen during my HSG x-ray. You can see from the image from my HSG below that it was upside down. Today’s ultrasound, it was the right way round and looked almost perfect. Text book.

My HSG X-ray with my retroverted uterus (it’s hard to see because it’s hiding behind the catheter)

I don’t have a copy of images from my ultrasound from today, but I have found a link that shows the difference between a normal and abnormal result from a hydrosonogram.

After all the excitement and the nurse had cleared everything up, suddenly my RE exclaimed! “Wait! I need to see her ovaries so I can calculate her dosages!” So back in the stirrups I went and the nurse re-prepared everything for another peek inside using the magic wand. We had a very quick look at my ovaries to count the number of follicles. As today is Cycle Day 7 I had about 5 or 6 follicles in the right ovary and then a dominant one in my left. She seemed pleased with this. I mentioned that I knew it was going to ovulate from the left his month because I could feel it. I can always feel pain in my ovary on the left side when I’m ovulating from this side. I’m not sure why. The doctor who’s name I cannot pronounce seemed very interested in this fact. I left wondering why.

All in all, I left with a sense of relief. But my feelings were mixed. I was relieved that we can still proceed with IVF and there was nothing seriously wrong that would require surgery, but I had the feeling of frustration. In the back of my mind, we still don’t have an explanation for why we have not been successful in conceiving so far. Unexplained infertility can really niggle away at your mind.

On a side note, today I have experienced two more pregnancy ‘announcements’. One whilst I was at the fertility clinic, a lady found out she was being released from the fertility clinic to her OB/GYN. She kept asking the nurse if she was sure, then she cried a lot (tears of happiness of course) which made pretty much everyone else around cry too. Including myself. And secondly another of my colleagues who recently married is pregnant. Soooo all I’m thinking is – who is the third? They usually come in threes, right??!

Where to go for more information about IVF?

May 13, 20159 Comments

When we decided to go ahead with IVF at our last appointment, the doctor gave us a rundown about the whole process, but I did not learn anything new that I had read about already. Of course, I had done some research on top google hits about the process in general. I have also been following a few blogs about ladies going through IVF themselves. But I will be honest…I have not really stepped up to my usual level of research. Probably because I thought I had plenty of time before we start this. Also I’ve been keeping myself busy the last couple of weeks, both at work and at play. Next week we have our first appointment with our nurse, so I want to make sure I ask all the right question from the outset. And so, the time has come! I feel like I have a big gaping hole in my knowledge and I need to fill it…stat!!

When I first started following blogs I was put off following IVF blogs that were overly acronym-ised and had lots of numbers on it. Without any reference, it felt like gobbley-de-gook to me. In fact it was (and still is) terrifying. I am sure it will all make sense soon, but for now I am following a select few who make it easy to read for newbies (thank you for that by the way!). But where do I start my research?

Areas I would like to better understand:

Medication for IVF
Embryology
Ethics
ICSI
Complimentary Therapies
The statistics low down! Because I just can’t help myself being an analyst by trade, I’ve got to know!

Do you have any good suggestions for books or websites that you have found helpful with your IVF journey?

The $$$ lowdown

May 10, 20152 Comments

I have created a new page on my site that sums up all the costs of our infertility journey so far. I will keep this up to date as much as possible…I have copied the text from it and pasted it below (or here is the link to the page)

We are very lucky that our medical insurance includes coverage for the treatment of infertility, including IUI and IVF.

We are being open and honest about these costs because it is important for people to understand the difference having insurance coverage can make. Only 15 states in the US make it mandatory for insurance providers to cover infertility treatment, and even some of those are extremely limited. There is much debate on whether infertility should be covered as an essential health benefit. There are many campaigns ongoing to change state law in this regard (www.resolve.org)

There is definitely a lot to be said about the psychology and stress to infertile couples over spending this vast amount of money if they do not have insurance coverage for infertility. Chris and I find this process stressful enough as it is without the added burden of the actual cost. I cannot even begin to imagine what it would be like without coverage. At each stage of our journey we have had to get approval from our insurance company and with having an ‘unexplained’ diagnosis we have always been nervous that they will not cover us. However, we have been fortunate so far. Fingers crossed they will cover our IVF too.

Item	Full cost	Insurance covered?	Final cost to us
Ovulation Kit (pack of 20) x3	$70.00	No	$70.00
Pregnancy Tests (various types) x4	$85.00	No	$85.00
Basal Thermometer x1	$13.00	No	$13.00
Pre-seed Lubricant x1	$24.00	No	$24.00
Chris blood tests	$572.00	Yes	$10.25
Dani blood tests	$560.00	Yes	$14.43
Reproductive Endocrinologist Consulting Fees (Doctor visits) x3	$340.00	Yes	$5.85
Ultrasounds x4	$900.00	Yes	$71.72
Anti-biotics for HSG	$15.97	Yes	$1.60
Sperm Analysis	$110.00	Yes	$1.53
HSG	$835.00	Yes	$29.18
Letrozole x3	$8.53	Yes	$0.86
Ovidrel x3	$371.16	Yes	$37.11
IUI x3	$765.00	Yes	$36.81
Sperm Wash x3	$320.00	Yes	$16.80
Progesterone suppositories x3	$147.00	No	$147.00
Running Total*	$5,136.66		$565.14

A note about our healthcare insurance. We pay a 10% co-pay for each bill of the ‘in-network’ cost, not necessarily 10% of the whole cost. Our current infertility clinic (or ‘provider’ as it is also called) is ‘in-network’ so we get extremely preferable rates; for example our new doctor visit it was $190.00, our insurance paid $0, so we paid $0. This is because our insurance company has negotiated these types of ‘bulk’ discounts in advance with our provider.

Choosing an ‘out of network’ provider can increase overall costs. There is one other fertility clinic in our area we could have chosen, but is out of network. It was something we considered, but we went on recommendation and did not think too much about this at the beginning.

Currently my insurance premium is ~$500 a month, plus my employer contributes ~$1100 a month, this covers both Chris and I for all medical expenses including dental and optical.

*As of 10th May 2015

Surprise surprise!!!! IVF!

May 5, 2015May 5, 201512 Comments

Well my blog post title has given the game away, so in summary…our next step will be In-Vitro Fertilisation!

This morning we met with our RE who reviewed our progress so far, or lack there of. Our tests were all normal, the three IUIs all went according to plan (except of course for the pregnancy part), I responded well to the letrozole with 2-3 follicles, Chris had awesome sperm. We remain unexplained, but she does still suspect endometriosis. If my period pains were so bad that they affected my life and I wanted that to change then she would recommend a laparoscopy. This surgical procedure comes with risk, side effects and can take several months to return to normal, so if my periods were so bad this would be the way forward, however, in my case the benefits are unlikely to outweigh the downsides. So she recommends we move straight to IVF. She explained the overall process:

Week 1 to 2 – after menstruation I start birth control pills for about 14 days, these help to control my hormones

Week 3 – start injectable medications to control ovulation and stimulate follicles to grow – many many more than the 2-3 that were stimulated with letrozole in order to get the best chance of retrieving some ‘good eggs’.

Week 4 – continue injectable medications…have ultrasounds every other day to monitor follicle growth, along with blood work to monitor hormone levels. When the follicles are ready, we will inject the hCG Ovidrel trigger and 36 hours later I go for egg retrieval surgery. Under sedation my eggs are extracted from my ovaries. Chris provides his sperm and my eggs are fertilised in-vitro. After the eggs have been fertilised, the embryos grow for a few days under close watch. Then if they survive, one or two embryos are transferred directly into my uterus.

Week 5-6 – start injectable progesterone until the big pregnancy test either says – “woohoo you are preggers”! then I stay on progesterone, or…”booooo it’s a BFN my friend”, then we will…..well, let’s not go there right now.

This is everything I expected her to say, except for two things slightly different.

First, I need to go for a hydrosonogram. This procedure will produce a 3D ultrasound of my uterus. I will have this last test because I have a severely retroverted uterus they could not see it very well on the HSG X-ray, they want to double check that there is nothing preventing the implantation stage.
My HSG X-ray with my retroverted uterus (it’s hard to see because it’s hiding behind the catheter)

I have been promised this does not hurt quite as bad as the HSG. THANKFULLY!!!!
Secondly, she thinks it would be a good idea to do Intra-Cytoplasmic Sperm Injection (ICSI) because we are ‘unexplained’. This is a procedure where a single sperm is selected and injected directly into the egg rather than normal IVF where the sperm is placed near the egg. This procedure is an extra $2,420 so we need to check whether our insurance would cover this or not.

Talking of costs….it is going to cost $9,075 for the IVF which includes office visits, endocrine monitoring, ultrasounds, retrieval, transfer and first pregnancy test. Plus, it is an additional $400 for the anaesthesia. Medication will be approximately $4,000 to $6,000. Then the ICSI procedure is $2,420. Cryopreservation is $1000 then $60 a month for any embryos frozen. Yikes!!!! But we roughly knew this anyway, it’s just a bit scary seeing it listed out like this.

So for now, we start the negotiating with our insurance and the diary planning. It’s looking like a late June start.

Ultimately, today I walked away with this one key figure she gave: for us – a 50% chance of success. In my mind that is pretty amazing. I’ll take that. I’ve always been a glass half full kind of girl, lately it’s been half empty, today I think I’ve been topped back up 🙂

Thank you for all your support and kind thoughts so far, I’m feeling pretty encouraged this will work!

The great dismal swamp – not quite so dismal

May 4, 20154 Comments

For the last nine days I’ve had a break from blogging and we are on a break from trying to conceive. I needed both a bit of mental break and a physical break, trying to catch a breather in preparation for our ‘Next Steps’ appointment with our RE tomorrow. But taking a break hasn’t been plain sailing. I have had a couple of ‘break downs’ in the last few days, mostly ending with me snapping at Chris and/or crying as a a snivelling mess. Why? Because I hate this limbo ‘not knowing’ business.

Unexplained infertility is a sucky non explanation for why we haven’t been able to conceive so far, even with a little help. There are so many questions I have that may never be answered…and it is difficult to get out of this hole of asking “why?” and “what if?”. Chris has been amazing, he is strong and can handle my random outbursts of crying, reminding me not to bottle all up. But I can see it in him too, he has the same questions as me. I know at tomorrow’s appointment we will not have many of these questions answered immediately, but it will help make the path a little clearer in the next steps. It’s the baby steps I need to help keep me sane, a break has so far been physically good for my body but mentally it has been hard.

So where better to get one’s self out of a dark hole? The great dismal swamp…this place can take your breath away, and can be anything but dismal. The swamp is huge, over 112 000 acres and in the heart of this wildlife refuge is an amazing lake, lake Drummond, that is an impressive 3000 acres. Apparently it is one of two only natural lakes in Virginia.

Lake Drummond at the great dismal swamp

The swamp also has a lot of history steeped in it, particularly as this is where many fugitive slaves lived, under the cover the swamp land. I’ll tell you something, the mosquitoes are horrific in the summer. This wildlife refuge is always so quiet, and it is easy to quickly feel like you are in complete wilderness, it is anything but dismal.

This time of year is renowned for rare warbler birds and many stunning butterflies. So today we took our bikes and got on the trails. In addition to the many sightings of deer we were pleasantly surprised to see thousands of hairy caterpillars, munching so loudly it sounded like it was raining in the swamp.

Hundreds of hairy caterpillars and wishes too!

I feel refreshed this evening after our mini trip to the swamp. No more tears, I’ve promised Chris this, for at least a few more days anyway 😉 I cannot tell you how much I am looking forward to our appointment tomorrow…..

Chris got some cracking photos today: The wish

Period Pants (The trouser variety)

April 24, 201511 Comments

I took a home pregnancy test last night just to be sure. I had a bit of spotting so I was still holding onto hope. But at the same time, I didn’t want to take another progesterone suppository if I didn’t have to. No matter how much I squinted at the test this time, there was nothing but white space. I awoke this morning to the fat lady singing. And no she wasn’t a beautiful opera singer, rather the heavy ugly type, and a little bit out of tune too. And so the period pants come on. Both the knicker type and trouser type, just to be clear.

Our appointment with our doctor to discuss the next steps is scheduled for 4th May, the earliest appointment possible. I am looking forward to it, but mostly I am looking forward to not trying to conceive this month. After 17 months, its time for a little break. Time for some alcohol (just a bit), exercise (a lot), some dangerous sports and diet (just a bit because I’ve put on a bit of weight the last few months, time to get into that bikini!!). No more temperature taking, no more peeing into a cup, no more hormones, sex when we want to and hopefully a little less pain. Doesn’t sound so bad, does it really?

Ps. Oh and if anyone tells me it will happen now we are relaxed I’ll punch them in the face. Sorry.

Time to get back to some of the more ‘dangerous sports’…sorry mum!

Understanding: #YouAreNotAlone, #NIAW, #WeAreNotAlone

April 24, 20158 Comments

The baby shower

I sit in the corner, quietly observing the group, hoping no one talks to me and asks me how I am. I’ve been dreading this day for weeks. I am not really sure what the etiquette of baby showers is. I’ve learned about wedding, birthday parties, funerals and baptism etiquettes, but as a Brit living in the US, baby showers are new to me. One thing I do know for sure is that sobbing away in the corner, trying to make sure no one sees is not part of the celebrations. Why all the tears? Because this should be my time for my baby shower. I don’t mean to sound self-centred, but you see we have been trying to conceive for 17 months now.

Like the singleton table set aside at weddings, baby showers should come with a table reserved for infertiles. After all, 1 in 8 couples of reproductive age could have a seat at this table.

My tears are short lived, of course, as the excitement of adorable ‘mini-me’ baby gifts and funny games take the course of the day. Our friend who has that beautiful pregnancy glow to her skin, was happy. So happy. For me this was all I needed to prevent me from drowning in my own misery and enjoy the party.

Unfortunately, it seemed that not all of us could cope this well. One of the guests left within 10 minutes of arriving. She had driven hundreds of miles for the baby shower. Why would you drive all that way just to stay for 10 minutes? And so the speculation and rumours started. My husband interjected with a suggestion “Perhaps she is trying for a baby and found it all too much?”. We both looked at each other with that ‘knowing’ look. Sadly, no one in the room bought this excuse, dismissed it and the speculation continued. The departing lady, who I did not know personally, may have been infertile, or perhaps she had some other good reason for leaving the baby shower as quickly as she had arrived. Statistically, the chances were high that at least two of us at the shower were suffering from infertility. With both my husband and I in the room, it was easy to wonder who else is silently suffering? If it was this lady, I wish I could have told her:

“You are not alone”

I would have held her hand, hugged her and told her it’s OK, I understand, we can face this disease together.

But for some people experiencing infertility, a hug from a stranger will never make the pain and hurt go away. I know this. I feel more comfortable on my infertility journey than I ever have been because I discovered a place where hugging strangers is quite a common place. The blogging world. I have been surprised to discover comfort and understanding from the ‘virtual’ hugs, support, discussion and love from the biggest group of ‘strangers’ I know. It’s not just strangers that have joined us on our journey, but a small group of family and friends too. The ability to communicate, open my heart and share my feelings has been a therapy for me. But not everyone we care about knows of our struggles because it is not easy to talk about.

Please help us on our journey.

As it is infertility awareness week, we are taking a big leap and inviting you to join us on our journey – or more aptly put – the hunt for the great pudding club. You have been invited because we trust and love you. We want you to know that this week we will be starting a new chapter in our journey. Ironically it is National Infertility Awareness Week.

We have been diagnosed with unexplained infertility, it is a surprisingly common diagnosis for about 25% of those with infertility. To date we have tried three rounds of artificial insemination, known as IUI (Intra Uterine Insemination). This week has been particularly difficult for us as our final prescribed round of treatment failed. With each round of treatment the sad news of our failure does not get any easier to digest, rather, the sadness stacks up and our hearts grow heavier.

The IUI procedure nicely summed up

We are now at the cross roads stage where we do not know exactly which route we will take: IVF, gestational carrier, adoption or even child-free. Whichever route we do decide to take, we want you to be there with us.

How you can help us

Opening our hearts about our infertility journey leaves us with open wounds, and the occasional feeling of self-inflicted nausea (wishing it was nausea from pregnancy, of course!). If you would like to come with us we have some ideas on how to help us through our journey…

Ask us how we are doing, and if we do not to tell you every intricate detail of our treatment, please don’t be offended. Sometimes we just don’t want to talk about it because we have been thinking about it all morning and just stopped thinking about it.
We love hearing stories about how your little one was conceived, especially the funny stories. But please do not tell us that we should try this position, or that method. After all, I am pretty sure we have tried everything we could possibly google. Legs up, from behind, on top, downward dog, on holiday, when drunk, herbal tea, with a full moon etc… The chances are slim that we will be able to conceive naturally.
Although telling us about your friend that conceived after X time, with X procedure might seem affirming, everyone with infertility is different and so your story probably won’t apply to our situation. The obstacles each one of us faces will be different and the path we take will be unique.
Please don’t ask us 14 days after our fertility treatment procedure if it worked. If it worked, we will tell you in our own time if we find out I am pregnant (it won’t be long after we find out, I am sure the excitement will be too much!); if it didn’t work, we need some time for ourselves to contemplate our next steps and to just have a big old cry.
We like emails, phone calls, skypes and messages that remind us that there are other things going on in the world. We don’t want to think about infertility and babies all the time. It can be emotionally exhausting at times. Send us photos, tell us funny stories or pass on a couple of memes. Please don’t feel like you are treading on egg shells around us or worry that we are too busy to speak to you.
We also want to hear about your little ones too and would love to be invited to events and parties too, after all we are going to be parents sometime soon too 🙂
Finally, please don’t suggest ‘You can just adopt’ to us. If you look into adoption you will quickly learn that this process is not easy, cheap or free from emotional baggage. There are no guarantees. The casual statement of ‘you can just adopt’ makes it seem like not being able to conceive isn’t that big of a deal and ironically is often said by people who already have their own children. Such a casual, throw away statement makes the whole process seem like we can simply go to the store and pick the type of baby we want from the range on the shelves.

The list above is specific to us, not everyone who suffers infertility will feel comfortable with what we are suggesting, each couple will deal with it in a different way, so if you know someone else who is going through this you should ask them how you can help.

Regardless of the individual items on people’s lists, one thing we can all do is be cautious, being a little more sensitive and take a little time to think before asking anyone about having children. If you know a couple that has recently married it is easy to ask ‘so when will we hear the pitter patter of tiny feet, eh?’ but what if the couple is struggling to conceive? Such an innocent question and yet it could be devastating. We’re not saying don’t ask questions, just don’t make assumptions. Until we had gone through this experience I would often be the one asking such questions, I only realise now how hurtful those questions could have been.

What else can I do?

Come join us, support National Infertility Awareness Week by adding a twibbon to your facebook profile. You can follow my blog or facebook page, read the links below to help understand more about infertility. Share your awareness so that others who quietly suffer do not feel like they are alone.

http://www.resolve.org/about-infertility/what-is-infertility/ (Basic understanding of the disease of infertility.)
http://www.resolve.org/national-infertility-awareness-week/about.html(About National Infertility Awareness Week)
http://www.resolve.org/about-infertility/medical-conditions/unexplained-infertility.html (About Unexplained infertility).

Thank you for understanding as we go through some challenging decisions and supporting us, giving us hope like you have already, we feel very much loved in the knowledge that we are not alone on our journey.

Dani & Chris X

#WeAre1in8 #YouAreNotAlone #WeAreNotAlone

Irritable Bowel Syndrome and Trying to Conceive

April 12, 2015April 12, 20156 Comments

I have Irritable Bowel Syndrome (IBS). It is a relatively common disorder of the gut. The weird thing about IBS is that no one really quite knows what causes it exactly. Symptoms are variable depending on the nature of the IBS. For me, I suffer from abdominal pain and diarrheoa. I’ve had it since I was a late teen. But I don’t really remember when it truly started, but it got worse at university. There is no cure for IBS, only treatment of the symptoms. Approximately 1 in 5 people will suffer from IBS in their lives, some may never realise they have it. Symptoms vary on scale and nature and is slightly more common in women than men.

I am writing about IBS because last night as I boarded the plane for my transatlantic flight and experienced an awkward situation. As I sat down the family next to me asked if I could switch seats with their son (about 13yrs old) so they could all sit next to each other. Sure I said, no problem, I don’t mind moving a row back! But then they pointed to the dreaded in centre seat. I had specifically booked an aisle seat because I go to the toilet a lot. And as this was a red eye flight I would not do well sitting here, I would have asked the person next to me to move at least 10 times so I could go to the toilet. I looked at the boy, realised he was 13 and thought he would be perfectly fine there, plus one of his parents could always sit on their own if they were worried about him. So I politely declined to switch seats and told them of my predicament to be near the toilet. But then the mother told me she couldn’t swap because she had a fear of flying. Yes I felt guilty, but I was very willing to swap with anyone in an aisle seat. Eventually a nice lady the other side of the plane volunteered to sit in the boys seat so I could sit in her aisle seat. But it just reminded me of the hidden side of IBS, even though I told the family my reasoning, they seemed pretty pissed at me. They didn’t understand. I know of people with IBS who have disabled toilet keys because when it is bad, it is very bad!! I don’t have this extreme requirement, but IBS is a hidden disability.

I self manage my symptoms. I know that stress makes it worse, and eating certain foods such as potatoes and pineapple can give me killer cramps and half a night on the toilet. I have simply learned to avoid certain foods or when I have a craving, give in and just expect it and manage it when it happens, I prefer it that way rather than take drugs. I tried a lot of things at university to relieve the symptoms, but ultimately cutting out the stress seemed to work the best.

In order to diagnose IBS the doctor will put you through a series of tests to rule out something more serious, like Chron’s disease, cancer of the ovaries or coeliac disease. These are tested usually with blood and stool tests. For me, the doctor said that there was a possibility of having endometriosis, which can only be detected through a laporoscopy. But before doing this invasive procedure she wanted me to try an exclusion diet to see if there were certain foods that increased the symptoms. After several weeks of hunger, cravings and a very large shopping bill, we figured that IBS was likely. So I never had a laporoscopy to rule out endometriosis. My current Reproductive Endocrinologist has suggested there is a chance I do have endo, but a laporoscopy can do more harm than good to my fertility if it is just a little bit of endo. I find it strange that I have no definite diagnosis whether I have one, the other or both conditions.

As I get further into my two week wait and I get pains even a couple of days after IUI, I wonder are they IBS pains? Or are they related to the IUI and the progesterone? What has IBS got to do with infertility? Well I didn’t think there was much of a linkage, but as always google shows you something interesting. There were two interesting conclusions that came out of my, albeit brief, search, in general the research is pretty thin on the ground.

There is no evidence to suggest IBS causes infertility. A couple of sites discuss this and conclude that there is no evidence of a linkage.

IBS increases risk of miscarriage and ectopic pregnancy. A research study* looked at 100 000 women who became pregnant during the period 1990 to 2008. Of these 100 000 women 6% suffered a miscarriage, which is considered to be the ‘normal’ statistic. Of these 100 000 women, 26 000 women were diagnosed with IBS. Of these women diagnosed with IBS, 7.5% lost their babies. That is a significant difference, increasing the risk of miscarriage for women with IBS by 30%. It should be noted that IBS is linked with other disorders which are also potentially linked to miscarriage, for example chronic fatigue syndrome and fibromyalgia, therefore it is not wholly conclusive evidence. The authors wanted to stress that the chance of miscarriage was still small, and that they wanted to highlight the need for more research into IBS and fertility. I have not been able to find anything more up to date than this report from 2012. Maybe they are still researching it…maybe no one carried it forward. But I think it definitely deserves some more attention.

*Increased Risk of Miscarriage and Ectopic Pregnancy Among Women With Irritable Bowel Syndrome, Khashan, Ali S. et al. Clinical Gastroenterology and Hepatology , Volume 10 , Issue 8 , 902 – 909

Third time’s a……

March 31, 2015April 1, 20151 Comment

Three Times a Charm

I think I am getting the hang of this IUI thing now. I understand exactly what is going to happen each day, what drugs to take, what side effect will happen and when, who to speak to on the phone, who NOT to speak to on phone, how to ask for what I want, how to make myself understood, how to refill my various prescriptions, what bills to expect, even what emotions I am probably going to feel on this roller coaster of a cycle. For example, I am on Cycle Day 4, and having taken two 2.5mg of Letrozole last night at 7pm, I knew at approximately 4pm Today I was going to be mega sleepy. And I was! Where I work, if you have done something more than twice you are considered an expert, so I’m going to declare myself “IUI Subject Matter Expert” on my “CV of life”. I’m feeling quite chilled out about it all, that is except for one, teeny, tiny, annoying thing.

INSURANCE.

The thorn in my side right now. Needles have nothing compared to this pain in the….

You may recall before we started IUI that my insurance company wrongly stated that I did not need pre-approval for IUI treatment. It was only after I started my first cycle all became apparent that we needed pre-approval before any fertility treatment. Since then, we have been trying to get things straight with our insurance company. I am not entirely blaming the insurance company here. I am blaming ‘the system’.

It seemed so simple, our insurance company required copies of our medical records to determine pre-approval for our IUI treatment. Well that’s easy! No? Fertility clinic – please provide our insurance company with our medical records. “No problem, we will get the nurse right on that” they said. Well each week we chased them, they claimed no knowledge of this request, but wait, what is this? …oh there is a note in our records to do this. Hmmmmmm. At our last appointment 2.5 weeks ago, the nurse promised us the request to send the medical files was with their business team and they were going to action it that day. Well it turned out that was all bull. No medical records were ever sent because we had to fill out a release ‘form’. And after the number of people we spoke to try to make this happen, not one person mentioned a form. Things also got complicated when the fertility clinic realised that our insurance’s medical office is located in Belgium. This would be impossible! Sending medical records abroad – there are different laws for this. They were not quite sure how they are going to do it, come on, surely there is a form for that too! How about I google it, I bet google knows the answer.

So after we hit this road block, Chris tried a different approach. He has given the half completed ‘pre-approval’ forms to our insurance company to chase up with our fertility clinic. When my insurance company emailed me this morning to say could I please provide them with a contact number for my doctor, oh, by the way we would need approval for each round of IVF….I flipped! As you can imagine we had dutifully and carefully provided a contact number and address, but most importantly, it clearly stated on the form the treatment was IUI. I even provided them with a breakdown of all the costs for each procedure and medication. Aghhhhhhhhh!

I have no idea what is going on right now, but it is all now in the hands of the insurance company and our fertility clinic to figure our laws, methods of handling medical records, procedures, money and what not. Why couldn’t we have got to this stage two months ago? At this rate we will probably get our “pre-approval” for IUI after we have finished all three rounds of IUI!

Without pre-approval we have paid for our first round of IUI out of our pockets and hoping we will be able to claim some money back. Soon the bills will be coming in for the second round of treatment. It would be nice if they figured it out before then. My worst nightmare is that they deny the claim because there was a small test we had to do or form we had to complete before we started with the IUI. There is little advice the insurance company can provide us on whether we are covered or not until they have our medical records. Similarly, they can’t answer if we are covered for IVF until they see our medical records. This makes financial planning for the future a little challenging. But we are planning for the worst, just to be safe.

I should point out that we do have a rather strange insurance arrangement – because my organisation is international, Allianz, our insurance company, provides coverage for all staff across the various countries. Allianz uses United Healthcare as their service provider in the US to purely deal with admin for claims made in the USA and negotiate in network deals with providers. This makes things complicated for medical providers here in the US when we try to explain that they have to provide medical records to Allianz, not United Healthcare. I hope I didn’t lose you there!

Third time…

So to sum up today’s post – Insurance sucks and starting IUI cycle 3 is going to be a breeze. As the saying goes….third time lucky! Or….third time a charm! Let’s hope it’s not like the other google search term on the list above – third time out :-s