The Waiting Game

The Waiting Game | Klinefelters Syndrome

I start to get that excitement feeling as I press the buzzer for the waiting room to meet Monika for our next appointment with one of the fertility nurses. In the waiting room I noticed cards on one of the shelves from successful parents with photos of babies on them.

We talk about this and it gives us some hope that the treatment options available to us will work. As I sit in the waiting room I’ve started to notice a few familiar faces amongst the people waiting. I begin to wonder at what stage they are at in the process as they keep disappearing off through a mysterious set of double doors. As my mind begins to wander we are called through to a room.

Mysterious Doors

The nurse introduces herself and has several pieces of paper and Monika’s file present. The mood in the room is pensive. Monika and I just want to get on with the treatment. For a moment it feels as if we are back at square one again. The nurse starts to recap through our journey to get here and spends about 10 minutes going through all the notes with us. The nurse then starts to tell us of the next steps. First step is to book an appointment to see one of the counselors. Not sure why but I decided to speak up at this point as I could sense upset coming on. “We’ve already done this – we were told that we could make an appointment with you to start to discuss the treatment options. As we are keen to get started!”

The nurse looked puzzled. Then found a letter confirming that we had already seen the counselor and the consultant had approved a treatment called IUI.

The nurse then started to explain what IUI is and how it works and what the success rate is. IUI is a process of taking the donor sperm and injecting it through Monika’s cervix around the time of ovulation. The theory is that the sperm has less of a journey and will find the egg and fertilise it – if all goes to plan! We asked what the success rate is and apparently it is between 5-20%. To me this seems very low – apparently it is roughly the same as the chance of getting pregnant through natural means. For our age this is about a 20% chance.

The nurse then asked us if we were happy to proceed with this treatment. We both agreed that we were happy to proceed. The nurse then mentioned we could take a few weeks to think about it all – but we had already made our minds up that we wanted to start as soon as possible. The nurse then asked us if we had already chosen a donor. We asked the nurse to outline the process.

The nurse gave us a form that had our names at the top and then below our characteristics and we were told to fill it out. The nurse said she would have to get a few more forms for us to fill out if we are to start the process today.

After we have filled out the form the embryologists then take the form and find matches based on our characteristics. There is also a special section on the form where you can request certain interests to be present in the donor. For example; Video Game Nerd! Obviously you have to be more specific than this (although when we got the matches back – this is debatable) At the time we just specified degree educated. I’m not sure if writing interests will make much difference – for peace of mind it seemed like a good thing to do at the time. Apparently some people are really picky with the donor characteristics and the interests that the donor has. Monika and I just want to start our family – when the nurse returned she was surprised that we were so quick to decide and had the form ready.

The nurse began to check through the details on the form and then looked at us and said that we both look similar. We had to both sign and date the form. Then the nurse presented us with more forms. Yes more things to fill out and agree to. The first was another consent form to use donor sperm. Due to the legislation about donor sperm you have to agree to so many things. I remember signing lots of forms when I bought my first house thinking there was a lot to read and sign – using donor sperm there are a lot more forms to read and sign. Weird!

Consent Forms

After we had filled in all the forms we then asked the nurse how long it would be until we could start the treatment. The nurse said it depends on a few things; if a suitable match is found, when Monika is due for the next period and when a scan can be booked. Monika then started to look at an app that she uses to track her periods (yes there is an app for that) it also records other things like bonking. I guess if you were getting pregnant through natural means then that would be something you would want to track – not sure how granular it goes – everyone is obsessed with stats! In the next 10 days Monika will be ready for her first scan.

The nurse mentioned that we should not rush and wait a month as everything needs to be in place before we can start. However after all the waiting we were keen to start. Monika was given 5 sticks that she has to pee on to check when she is ovulating. If a hormone surge is detected then Monika has to book a scan. The scan is an internal one that sees how big the follicles are and that gives the doctors an indication of when an egg might be released.

Before we left the nurse double checked all of the paper work and mentioned to me that I would need to have blood tests done. I thought to myself not again. I asked her why – and I did not understand why this was needed if I’m not contributing to the process. It was explained that it was a process thing and also that if I have any diseases then this could be bad. We were not allowed to continue until I had the tests done. If the tests come back clear then the next step would be for the embryologist to contact us with possible matches.

Now like many of you – I’m not a fan of needles and it took me a while to get comfortable having them poked in me during the Klinefelters Syndrome investigation that took place in Guildford. I guess giving blood is like visiting the dentist. You need to get comfortable with the person who is doing it. Once you are, you can relax a little bit knowing you are in good hands and that it will be over soon. This was one of those times when I had to man up and take the slip and walk down to the cold waiting area. Why are blood clinics always in cold rooms? Why do you have to take a ticket like you are at the meat counter in Tesco? Then once you are called why is it always a trek to the room and then why are the rooms really small?

Blood Test Number

Monika also had to get some blood done and she was not looking forward to it after previous attempts were a mission to find a vein. Monika’s number was called first and she disappeared down the corridor. I kept staring at the ticket and then at the numbers on the wall. It seemed like a lifetime before my number came up. The mood had returned to pensive. As I approached the room the nurses were all singing, some were even dancing as they were prepping the vials. I passed Monika on the way out who smiled at me. Monika knew that I was scared and said she would be waiting for me outside. Just as I sat down “Locked out of Heaven by Bruno Mars” came on the radio.

The cheeky looking Italian male nurse mentioned to me in a camp why that he loved this tune. As the beat started he was shaking his hips as he was preparing the vials. It was like I was in some strange land where all the nurses were competing in a strictly come cubicle dance off. I joked to the nurse that he had better be a professional and concentrate on the job in hand; getting blood out of my arm without me passing out. I gave him my left arm and in about 2 minutes it was over. The nurse mentioned to me that I have good veins and a good flow of blood. We exchanged smiles – I told him he was a pro and his skills matched his dancing – he thanked me like it was the best thing he had heard all day and began to usher me out of the room whilst dancing & singing to the end of the song. That was probably the strangest / hilarious blood giving experience I have ever had and probably the best.

We left the hospital feeling happy for a change. The weekend came and Monika had a missed called from an unknown number. Then a voice message from the embryologist came through. I didn’t know that they worked on Saturdays. Apparently they have to as some procedures can take place at the weekend. The embryologist mentioned that she had found eight matches! Eight! I was expecting one or two to choose from. She mentioned that she would email the matches through and that we could let them know which one we decide on. We also have the option of contacting European sperm banks to see if we wanted to get other matches. The problem with doing this is that the process is not as regulated as it is in the UK and life can get more complicated when the child is grows up. We opted to stick with the UK sperm and we were really excited waiting for the email to come through.

When the email came through it explained the process of choosing the sperm and what the next steps would be. After choosing the sperm we would then have to pay for it £175 per amp per try. To put this into perspective £175 gets you 1/10th of a 10ml test tube. Then Monika books a scan on a certain day. Then pees on a stick and if a hormone surge is detected we have to book a date / time for the procedure.

The email contained a cut and paste of an excel spreadsheet. At the top were both our characteristics and then below were the donor choices. The sheet listed out things like; height, body shape, eye colour, hair colour and then there was a section for interests. The interest’s section amused me. Remember earlier that I said you have to be specific and you couldn’t write video game nerd. Turns out that the donors are allowed to write these things. We looked at the list and decided that we would create a short list based on my characteristics. We settled on a few matches that had similar height, eye colour and then hair. Anyone listed below 6ft were put to one side. We then had three donors to choose from. The hardest thing about this is that you have no visual references to go by.

I have to admit that I found what was written in the interest’s section amusing. To the extent that I childishly posted something on Facebook – why would you write, “you are a member of the round table” in that section? Stupidly I thought it referred to Knights and it was some kind of castle loving club. Then I realised it is the name of a social club. After I had posted it I felt bad and removed it from my status. It was a silly thing to do – these people are giving up their time to help us have a family. After talking with Monika for a few hours we decided on the one. We chose based on characteristics that were closer to me and also stayed true to what we wrote on the form about interests.

Donor Form

Monika emailed the embryologists with our choice. A few days later we received an email from them to confirm our choice and we were asked to make payment. At the time it was a Friday and I was working at EGX (a video game show) in London. Monika wanted me to phone them to make the payment. So I sat in a room surrounded by nerds and hot consoles and made the call. I got that butterfly in your stomach feeling. Just as I called “Everybody Wants To Rule The World by LORDE” started up at the stand next to us so it was difficult to talk. The lady on the phone asked if I was at a concert. Unfortunately I said “no – I’m in a small server room at a game show working” she laughed and gave me the confirmation number. I sent Monika a text to let her know that the payment had been made and that she could book the scan.

EGX Server Room

The first appointment for the initial scan came through on the Tuesday following EGX. Surprisingly we are within the 10-day time frame we had a mind. Luck was on our side. I had to make some arrangements with work to attend the first scan with Monika. I have to say that my employer has been fantastic at letting me work at home to be able to attend these appointments with Monika – sometimes at short notice. Thanks!

When we attended the scan we were back in that cold room at the end of the corridor the one that had the grunting doctor who left. It felt weird to be back in there. Monika started to get ready and a doctor explained what would happen during the scan. About twenty minutes the doctor spoke to us and mentioned that there were two follicles growing but they were not big enough yet to release an egg. Monika was told to book another appointment in two days time. The follicles grow a 1-2mm a day. They need to a certain length before the will release the egg. It’s amazing that everything is timed and measured with such precision – when you think about it compared to the natural approach.


After a few more scans it is decided that Monika needs to have a hormone shot to kick-start the egg releasing process. St. Barts was undergoing renovation at the time so it was a mission for Monika to buy the injection. I thought they would have administered it as part of the treatment in the clinic. Not the case. Monika had to go out of the hospital, find the nearest cash point and go to the pharmacy to get the injection. Then take the injection back to the clinic and wait for the nurse to become available to administer the hormone. Monika was given some more pee sticks and told to test first thing in the morning and make an appointment to have the procedure for Monday morning. If the surge happened over the weekend we could call in the morning to have it done on Saturday otherwise we would wait for Monday.

Pee Test

Nothing happened on Saturday so we went in on Monday and the surge was present. We sat in the waiting room and there were couples that we had seen before. It’s almost like a group of couples go through the process at a similar time. Monika’s name was called and we went through the mysterious double doors. Beyond the doors are a ward and several treatment rooms. It felt like the TARDIS, small looking from the outside but a massive clinic on the other side. We were ushered into cubicle by a nurse and both given gowns, hats and shoe covers. Monika had to take most of her clothes off expect her under garments. I just had to put the gown over me and cover my shoes. It was a bit like a game of dress-up and as you do we took several selfies of us wearing the gowns. The comedy value was high. In the room there was a radio and playing on the radio was “Al Green – Let’s Stay Together” – so I started to sing and we both shed a tear of joy.

Our name was called and we were ushered into a treatment room. To one side there was a worktop with various instruments on. In the center of the room was a long bed with a place to rest your legs on at the end. A really friendly staff nurse and a familiar consultant who performed the scan on Monika the other day greeted us. Monika sat on the bed and I sat on a chair next to her. The nurse then confirmed who we are and what happens during the procedure. In her hand she had a small vial that contained a pink liquid. This was our donor sperm. On the sperm it had our names, hospital number and brief characteristics of the donor.

Gown Selfie

Monika is quite tall and her legs were dangling off the end of the bed. The nurse said she would have to adjust the bed. Apparently we are the tallest couple in the clinic. We all laughed! As Monika got comfortable we both shed another tear or two of joy. The nurse noticed and asked if we were okay. I mentioned that it’s taken a long time to get to this moment and we are just really happy to be here. The consultant then got Monika prepared for the treatment. The treatment happens like a smear test and I don’t think it’s pleasant experience. It takes about 10 minutes to perform. The sperm is transferred from the vial into a tube that looks like a catheter. This is then inserted into Monika and the sperm is squirted into Monika. I’m just sat next to Monika holding her hand and trying not to let my emotions get the best of me but I’m failing miserably and blubbing all over the place. The nurse then gives Monika an information pack containing a pregnancy test. We are told that Monika should do the test in about two weeks time. We are wished good luck and off we go.

Birth Dates

I think we are getting used to the waiting around. During this time we are trying to calculate when the baby would be born if the procedure were a success. It helps to pass the time. Monika started to feel different. It was quite weird in the week before the test. We woke up on the morning of the test and I patiently waited outside of the bathroom. Monika appeared and was upset. I knew that it was not good news and I started to shed some more man tears. Monika thought it had happened due to the way she was feeling the week before the test. We came to the conclusion that it was the hormones.

Pregnancy Test 1

I didn’t take the news well. The emotional side of me kicked in and I felt miserable for the rest of the day. I wanted it to happen. Everything had been timed perfectly. At the time I was also waiting to hear about news about a potential new job role at work that I had interviewed for. There was double stress looming on that day. I did not get the job and I think that made me angry inside a little bit. I also had to go to Hever castle to take part in a video game event involving nerds and historical weapons. I had to be my outgoing self and I just did not feel in the mood at all. I remember posting on my Facebook that I was looking forward to throwing axes at things. My work colleagues must have thought it was to do with not getting the new job – it was that but also I was angry about the fertility situation. When I was sat on the train on the way to Hever I listened to some angry music and then was determined that I was not going to let it get to me and focus on getting through the event. Then focus on trying again.

Monika and I discussed at length our thoughts about it all and if we wanted to try again. We decided to try again and booked in another scan. The strange thing is as soon as you get the negative result a week later you are back to scans and trying again. For the second attempt it looked as though we were on track – the scans showed positive results and Monika did not need a hormone injection, it felt good again to be trying. This time we ended up going to St. Barts on a Saturday. It felt strange being in the hospital at the weekend. We went straight from the waiting room into the cubicle. Put on our fashionable gowns and took some more selfies.

Playing on the radio was “The Jackson 5 – I’ll Be There”. We shared a moment like the time before and shed another tear of joy. We were called through to the treatment room, greeted again by the friendly staff nurse. This time it was a different consultant who looked like he had been doing these treatments for a while. Monika was impressed by the way the procedure was done – a lot better than last time. We were given the pregnancy test kit and asked if we had any questions. Monika had a few questions about pregnancy and flying as she was due to go on a business trip to Vietnam. There were no implications so we were good to play the two-week waiting game again.

More Gown Selfies

We would be testing on the day before Monika gets on a plane to Vietnam. During the two weeks Monika said she did not feel any different like the previous time. So the hormones definitely had an effect on her. The morning of the test had come and the result was negative. I had been out the night before at a work leaving drinks and had a crazy hangover. Monika was really upset with me and I was upset with myself and upset that it had not worked. We had a chat about everything and after lots of tears we decided that we would just have to keep trying and one day it will work.

Pregnancy Test 2

On the day that Monika gets back from Vietnam we are due to try our third attempt. We have to time everything perfectly as it will be off the plane, straight to the hospital for the scan and then back to work. The procedure is likely to take place the day before we travel to Poland to visit family. I just wonder what will be playing on the radio at the hospital. I hope luck is on our side!

3 thoughts on “The Waiting Game | Klinefelters Syndrome”

  1. Bless you both. sending lots of love and thoughts are with you. Simon and I know about that waiting game, but when the times right it’ll happen. After several months of trying and failing, Simon and I bought our dog, Kovu and decided we would stop the fertility drugs etc. Then a month later I missed my period and we were pregnant. It tooks us 3 years to have our daughter – don’t worry about the wait, it’s all worth it in the end. ! XXXX

  2. My husband has kilnfelters and we have been through the same journey you document so well to share with others who have klinefelter’s .
    He was diagnosed in 2000 ,we found out because we were trying for a baby without success.
    We joined the donor conception network and spoke to others that had klinefelter’s and shared our stories this was a great help .
    We had 3 failed treatments in a private clinic, we went to see our Gp as we were not happy about some aspects of the treatment we receive, so we waited 1 year from our last failed treatment until we tried again but this time we were referred to a hospital in the south west where we were given the treatment on the NHS 6 attempts .
    I also have a problem so I was placed on clomid 50mg and our first attempt at the new hospital failed so our next appointment they upped the clomid to 100mg and then I had an injection of HCG and we used a different donor this time around and a few pregnancy tests later it was positive we can’t thank the hospital and the great people we spoke to on our journey enough our Daughter is now 11 .
    We wish you both well on your journey.

  3. Thank you for sharing your journey. My son is 10 years old and he was diagnosed when he was 8 1/2. I look forward to seeing more videos and hearing your story.

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