From Hero to Zero- test results and next steps- Jan/Feb 2013

We attended an appointment back at our clinic in January to get the results of the endometrial function test (Yale test) I had done and the FISH test my husband had done in the never ending quest to find a reason why our cycles with blastocysts keep failing or, in the case of one, ended in miscarriage.

The Yale EFT involved completing a dummy FET cycle so basically I took the same medications as if I was doing a frozen cycle. This meant that most of December and Christmas was taken up with this. I had the biopsy for the test on 6th January, what a lovely way to start the New Year! This followed much the same procedure as for an endometrial scratch. However, although I got through the (short lived) discomfort, I did find this more painful than the endometrial scratches. Afterwards I felt very dizzy and lightheaded and had to be given some oxygen and chocolate to recover myself. Luckily my husband had come in to collect me. The Yale EFT looks for certain markers in the endometrium that may indicate a lack of receptivity to implantation. The biopsy is sent to Yale University for analysis.

The FISH (Fluorescent in-situ hybridization) test looks more deeply at certain chromosomes in the sperm. It looks at the X and Y chromosomes, chromosomes 13,18 ,21 and the level of diploid sperm (sperm with 2 sets of chromosomes instead of one). All that was required for this was just a semen sample.

My Yale EFT came back normal. My husbands FISH test was fine for the chromosomes X, Y, 13, 18, 21 but it noted a higher presence than average of diploid sperm, 0.49% instead of 0.24% for the control population. Our consultant seemed to point the finger at this as a possible reason for our failed cycles. This news was devastating for my husband who remained silent for the rest of the consultation, processing it all. The talk moved to our options. The consultant suggested that if we had another attempt using our own eggs/sperm, that PGD/PGS (pre implantation diagnosis/screening) would be an option. However, he didn’t recommend it on grounds of our age, the cost and the likelihood that we would not produce large numbers of embryos to select from. It would really only be for diagnosis to prove that the embryo was abnormal or otherwise. He suggested that we take some time to think about it all, but pointed out that our best chance would probably be with double donation, using donated sperm and eggs, or possibly donated sperm on its own. Sperm donation could be done in the clinic as could egg donation, but double donation would require going to a clinic abroad as no Irish clinic has a licence for it. PGD/PGS would require going to a different clinic as well.

The consultant suggested another specialist to whom we could talk in order to discuss other options. This specialist works with many different clinics including those abroad. We came away from our consultation  feeling somewhat deflated as it felt like clinic 2 have run out of options for us unless we do either egg or sperm donation on their own. The consultant did suggest arranging a follow up phone consultation when we had time to process the news but we haven’t so far.  When we got home, my husband cried his eyes out. I’d never seen him cry like that in the whole time we have been together. There was nothing really that I could do except comfort him and reassure him that it was not his fault, that he had done everything to help his situation and agree that yes this was highly unfair and unfortunate.

After a few days of licking our wounds I arranged a counselling appointment for my husband with his agreement. He found the session beneficial and started to get back to his usual self.  I made an appointment with the other specialist who had been recommended at clinic no 3. This person is an embryologist who works as a fertility consultant and runs a practice that provides support services for people undertaking treatment abroad, but which also has a clinic attached for standard IUI/IVF locally. Our appointment was scheduled romantically enough on the afternoon of Valentine’s Day. This was a very lengthy appointment. I had brought copies of all my results and the specialist went through various suggested options. The double donation option was mentioned again but he did not rule out cycling again using our own sperm/eggs just on the understanding that the chances of success would be greatly reduced (about 10%). He did not put as much emphasis on the FISH diploidy result as he said that these sperm would be unlikely to fertilise an egg in the first place and if this test was so crucial, why is it not provided as standard in all clinics? My husband hadn’t been feeling well all day (he had a viral bowel infection we found out later) and actually blacked out briefly in the consultation. This was nearly a repeat of what had happened to him at our very first fertility consultation back in March 2012. He said afterwards it was like a form of PTSD, it just brought him back to that experience. He was revived with tea and Oreos. The specialist suggested that it might be worth while taking a fresh approach and cycling abroad, the cost would work out much the same as cycling here even with travel. He suggested a clinic in Prague and said he could send our notes there and get an opinion. He considered a change in protocol would also be worthwhile, maybe one with less suppression than previously and a different stimulation drug, possibly Menopur. My husband was clear that he would like us to try one more own egg/sperm cycle before moving onto a donor path.  The specialist could see that he was not there on the donor issue yet and that I was nearly there but not quite. Part of me wants to see if the months on DHEA and high dose Co-Enzyme Q10 have made any difference.

An information pack was provided which included a list of basic tests to be repeated. It was stated we would not be asked to repeat any major tests as these had already been done at previous clinics and provided to this clinic no 3. The tests for me included a repeat antral follicle count scan, day 3 bloods, thyroid profile, dhea, amh and for him, just a semen analysis.

The following week I happened to be on the right part of the cycle so I got the scan and bloods done. These proved to be a bit depressing for me. My antral follicle count which had been 14 in 2012 (7+7) and 12 in mid 2013 (6+6) had dropped to 6 (4+2). My right side had always been the better performing side and now it has only 2 follicles. Equally gloomy was the fact that my amh which had been a higher than average (for my age) 34.87pmol in 2012 had now dropped to 6.7pmol.  The sad fact is that my biological clock is starting to tick out. I feel it is like the little clock that appears in the corner of the screen on Jools Holland’s New Year’s Eve TV show in the last minute before midnight. My FSH though had oddly improved. It was 6.8 in 2012, 6.2 last year and is now 5.6.  My mind is already thinking towards donor eggs even though I will give this one last try with my own my best shot. It’s just the sad fact of getting closer to 42. To think that I had good fertility less than 2 years ago and now it is low makes me sad, especially as my husband managed to get his count to 10mil from a low of 400,000 over the same time period but yet got hit with the news of this FISH diploidy result.

At least we can say we are both broken I guess. I feel like I have come from hero to zero in this timeframe and hubby probably feels the same.

I can’t generate any excitement about a final own egg/sperm cycle. In one way I want to get it over with so that I can move on from it. I am trying to read more about donor conception and both my husband and I attended a donor conception meeting recently which was very helpful. It was good to meet and talk with others who have either embarked on the donor path, are thinking about it or have had success with it. It’s nice to feel that our situation is not unique, that we are not ‘defective’ and that lots of perfectly ordinary normal people have travelled a donor path for whatever reason.

My husband had a repeat semen analysis in clinic 3 and this ended up being better news insofar as his count is now 20 million which is the minimum of normal. Motility and Morphology were also ok. He didn’t feel ready to go down the donor route and after some soul searching  and a meeting with the new gynaecologist we decided to give one last own egg/sperm cycle a try in a clinic in Prague recommended by our new satellite clinic. I am concerned that I won’t get enough eggs or that the quality will be poor even with all my DHEA and co enzyme Q10 supplementation. But we will give it our best shot and if it doesn’t work out I think I can move on to donor egg and maybe there will be a chance for my husband’s sperm yet. If not we will have to think long and hard about double donation.

We applied for international adoption but this process is essentially stalled in Ireland at the moment with wait times exceeding 8 years and no guarantees. This is heartbreaking when we think of the children in need of homes and unable to be placed with a loving family here.

For now though I will do my best to try and keep positive. The protocol suggested by the Prague clinic is quite different to the long protocols I’ve had before. It is a flare protocol that avoids down regulation and over-suppression of the ovaries. I will have Menopur as the stims drug and Cyclogest is the progesterone. IMSI, PICSI, embryo glue and embryoscope are available options if needed. Maybe it will help having a completely different protocol. I am lucky to have lots of support on Twitter, my fertility yoga class and other support groups through which I have a number of email contacts and couples I now know in person. I’m getting counselling in advance too as I want to go into this with a better frame of mind than the title of this blog post might suggest.

I’ll be back to update on my Prague adventure….

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2 Responses to From Hero to Zero- test results and next steps- Jan/Feb 2013

  1. rh1annonb says:

    I really hope that this will be the one that works for you. I will be keeping everything crossed for you both xx

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