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The Waiting Game | Klinefelters Syndrome

November 22, 2014 Dan 4 Comments

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.

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!

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?

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 1/10^th 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.

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.

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.

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.

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.

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.

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.

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.

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!

Family Time – The Next Chapter

September 11, 2014 Dan 2 Comments

You will be reading this as Monika and I are about to embark on the next chapter of our life together. I’ll be thinking about this blog post and also the week ahead. I’ll also be thinking about your reactions and thoughts towards the contents of this post and hoping you can share the sentiment. I realise that I have not written many words for a while. I’ve been focusing on the next chapter in my life – family. You may recall that I proposed to Monika and she accepted. I’m pleased to tell you that we got married on July 5th 2014.

The usual stages of a solid relationship is live together for a bit, make sure you are comfortable with each other, make sure the spark is always present and prepare for a long lasting future together. That usually involves marriage, getting a house and starting a family – there is no order that you do this in and there is not a set way to approach this.

Having a family is something that I have always dreamed of. It’s a cruel world when you are denied the opportunity to start it the easy way with someone you love. Over the past year Monika and I have been investigating what our options are. As you may or may not know I am infertile due to Klinefelters Syndrome. I was born with an extra X chromosome. A simple way of explaining why I’m infertile is that some things are switched on and other things are switched off. The ability to father a child by normal means is switched off as is the ability to produce normal levels of Testosterone – something that I receive treatment for.

The first option we explored was the process to surgically retrieve sperm from the testes. However upon finding out that after taking testosterone supplements reduces the chances of finding sperm we decided this was not an option. We were given a chance of 20% at a cost of about £5,000 + storage costs. Financial implications aside – and considering everything I’ve been through till this point – it would destroy me, knowing that there is nothing to rescue. It was not an easy decision to come to and I suffered many sleepless nights thinking about the process and the implications of it.

The second and final option we considered was to go down the route of donor sperm. You would think it’s a a relatively straightforward process getting donor sperm. Trust me, it’s not at all. Once we had made the decision that this is what we wanted to do. Monika contacted her G.P. and told him of our complications to start a family – he wrote a referral letter. About 4-weeks later Monika received an appointment to attend St. Barts (London) fertility clinic.

When we attended the clinic, we were greeted by a really pleasant (sarcasm) receptionist. Who instructed us both to fill out consent forms – basically protecting all parties involved. I initially thought this was weird as we had just come through the door, walking into the unknown – a cold sterile environment with a moody receptionist and your typical NHS drinks machine buzzing away in the background. We filled in the forms and waited about 20 minutes before a nurse came and took Monika off to get measured and weighed. Another 20 minutes passed and we were ushered into a room by a doctor.

The room was at the end of the corridor, it felt like a box room and in the corner was a window and beneath that was a chair with ultrasound equipment – the room was cold and it wasn’t just our nerves. The whole place had that negative vibe about it. The doctor was clearly new and not familiar with her surroundings. Fumbling around on the desk gathering scraps of paper and leaflets. The doctor turned and started to speak to Monika and say that her G.P had referred here to the clinic on the grounds of not being able to start a family by natural means.

The doctor asked if she knew why we had been referred to that particular clinic. I piped up and said it is down to the fact that I’m infertile due to Klinefelters Syndrome. The doctor grunted (very odd) and mentioned that there was no mention of that on the referral letter. I thought in the back of my mind ‘here we go again’. She began to question me about when I found out and under what circumstances. I felt a bit weird talking about it all and I was speaking with a lump in my throat – it’s not a time in my life I want to remember. Monika reached out and comforted me and then spoke to the doctor about the next steps as I was unable to articulate my thoughts. The doctor said that we would both have to have blood tests and I would have to give a sperm sample. Monika also had to book in for a scan to make sure she was okay inside. The doctor then said because she had no record of the Klinefelters Syndrome we would have to start again. I suddenly felt weird, starting again – as in verification of me having Klinefelters Syndrome? Surely they can just contact the consultant at Guildford and swap notes!

They asked me if I could get the notes as they did not have it available from the G.P, but then why would they as it was Monika that had been referred – patient confidentiality and all that jazz. The doctor was still insistent that I do a sperm test and a blood test. I questioned this – if we were going to go down the sperm donor route I would not be involved in the process physically. The doctor then started to go on about surgical sperm retrieval and said that there might still be a chance for us. I mentioned to her that we had considered it and it wasn’t something we wanted to go for. The doctor didn’t seem to take no for an answer and carried on insisting I have the tests. I felt really pissed off by her approach towards it all and I agreed to it just so she would stop talking. We received our slips for the blood and then we had to book an appointment for Monika’s scan. Leaving the place we felt excited but deep down I knew it wasn’t going to be an easy process and we would have to join the queue.

Monika had the blood tests done as soon as she could and the service was not the best. Several attempts and a bloody arm later it was a process that Monika did not want to repeat for a while. I wrote a letter to my consultant in Guildford explaining the situation and then followed up with his secretary over the phone. Apparently they had sent a letter to St. Barts with all my details and they advised me not to have the tests as all the information the doctor needed was there.

A month or two later Monika received an appointment to visit the hospital clinic and have an internal scan. I went along to support Monika. We met a lovely doctor who seemed very knowledgeable about our situation which put us both at ease. I don’t think the procedure was very pleasant for Monika – but it seemed to be over in about 20 minutes. I was going to make a joke about the way the doctor applied the condom to the probe but that would have been inappropriate so I refrained and told Monika afterwards. We both had a giggle. The doctor then explained the next steps and we were told we would get a follow up appointment to speak to the doctor about treatment options. Monika also asked the doctor if everything was okay – and the doctor put her mind at ease with no noticeable issues.

Two months had passed by and we had not heard anything from the doctor. Monika decided to follow up and then an appointment was issued. This time I wasn’t able to attend due to attending a business meeting. On arrival at the clinic Monika was met by her favourite receptionist and told to wait in the waiting room. There is just something about the receptionist that rubs Monika up the wrong way. Monika was ushered into the consulting room by a different doctor. In this clinic you never get to see the same doctor which I find odd as there is no consistency between appointments and you have to repeat all your details over and over. Had I have been at the next appointment I think I would have lost my shit as what follows is an appalling situation.

Apparently the doctor that we had seen the last time had left the clinic and between our appointments and Monika’s tests nothing had been done. That’s right, absolutely nothing! Monika had to spend the next 30 minutes or so explaining the situation to the new doctor. The doctor was adamant that I would need to have certain tests performed on me as they did not have the letter from the my consultant to back up what Monika had told them. Thinking about it my consultant probably referenced my name in his letter. All the consultations are in Monika’s name – so no doubt the letter is sitting in a filling tray addressed to the doctor that left.

Monika walked away from the appointment feeling a bit sad as it felt like we were a few months off from where we wanted to be in the process. Monika had to repeat her tests, thankfully they still had record of the internal scan. I had to make an appointment for my blood to be taken and also to give a sample of the nothing that comes out. As they wanted to check that my consultant had not missed anything – ridiculous and I refused to get these tests done. Going down the donor sperm route there’s no need in my mind to have these tests done.

Another month went by and we received a letter from St. Barts asking us to visit a counselor. The doctors apparently need to make sure that as a couple you really want to have a child and you are mentally prepared for the task ahead. We were told about the various options open to us – sperm retrieval being something that was still talked about even though we had made our minds up on donor sperm. The counselor then carried on to talk about when to tell the child that they were made from an anonymous sperm donor – although it’s not completely anonymous as your child at the age of 18 is legally entitled to contact the donor. Something I was aware of, but also something that we had not thought about too much. When you are sat in a room with your wife to be – this stuff really hits you both emotionally hard as it wasn’t something we had considered.

The counselor then began to tell us about books you can get to explain to the child from an early age where they came from. Apparently some parents to be – don’t tell the child due to religious beliefs. We discussed at length with the counselor that we would aim to talk to the child as soon as they were able to understand the situation.

We then discussed all of the different treatment options available to us. For example they can put Monika on certain medication that will force the cycle. We needed to be made aware of the complications of this medication and also the impact it would have on our lives. The session lasted for just over an hour and I could not help thinking that we were on trial – and we needed her sign off before we were allowed to progress to the next stage.

The next stage was an appointment with the nursing team however it was a right mess trying to organise an appointment. We were copied into an email from the counselor to the fertility nurses that we were ready to progress. The counselor put in her email that we should be able to just get on and do it. After lots of emails to an unresponsive nursing team we finally made contact and two months later an appointment came through the door. This time it wasn’t with the nurse but with another consultant who has the overall decision if you can progress with the assisted pregnancy and also what treatment you get.

We found ourselves having to explain about the Klinefelters Syndrome and how we got to where we are. It all seems like it’s taken a year to finally start seeing some action from St. Barts. During that appointment we told the consultant about the previous appointments and about the tests the other doctor wanted me to have. We spoke about the % chances and how we got to our decision on using donor sperm. The consultant then decided he was not going to put Monika on any medication and to attempt a natural insemination process. The consultant also said that I did not need to do the tests (I was relieved!) however Monika would need to do a few more blood ones to make sure her hormones are doing what they should be.

Then we spoke about costs and this is what we get upset about the most as it’s not cheap. For example if we went hunting for sperm, that operation would be approximately £5k plus storage fees if something was found. On top of that, would be the cost of cycles of ICSI. On the NHS we are covered up to 2 cycles including drugs and follow-up appointments. After that we are on our own! We were relieved to hear that for the natural process we just have to pay for the sperm and then wait for the magic to happen. Although we are less likely to have twins. I guess if Monika enjoys the pregnancy we can make sure we buy enough sperm for a second child from the same donor.

Having just got married at this stage we were getting excited as the consultant had signed off the treatment and stated we could start as soon as Monika’s next period. After we left it started to feel awesome that we were ready to start the next chapter. The consultant suggested we go over to the main clinic to make an appointment with the nurses to kick off the process. We walked over to the clinic and we were greeted by non other than the moody receptionist. We explained what the consultant had said and for us to make the next available appointment. We were in August and she said the next appointment would be end of October! Both of our hearts sunk to the ground. More waiting around! Monika started to cry and I got upset as well. The receptionist was very unsympathetic towards us which made us feel really great! We made the appointment for October and stormed out of the clinic – gutted!

As we walked out we exchanged frustrations with the whole process – it’s been a chore to get to where we are today and it felt like we were being made to wait even longer. We had even done calculations that if we started in September we could have a summer baby. We have even chosen names as we’ve had such a long time to think about it all. I’ll keep that under wraps for now.

I was inspired to write this post as we received a letter recently that our appointment to start had been brought forward to September. As you can imagine we are really excited again. I’m writing this post through crazy turbulence on a flight back from a business trip. It feels good to be able to share with you our plans for the future and also highlight the process we have had to go through to start a family. A part of me wishes we were able to have a family through normal means but then when I think about it, we are going to make ace parents! This process has made us stronger, closer and more appreciative of the building blocks of life. As you are reading this post we are probably in the clinic discussing the treatment with the nurses and choosing our donor. Watch this space, baby Sheridan is coming to a world near you soon!

Crossroads

June 18, 2012 Dan 1 Comment

It’s been a few months since I last put pen to paper and wrote down the thoughts swirling around my complex mind. I have given myself time to think about how best to put things without causing offense to people concerned and it’s been hard, it’s been REALLY hard! I think I am ready now.

Rewind the clock back a few months to the month of April. I had been suffering from the stresses and strains of modern life and found out a few things about someone that I used to care for. On top of that I had my annual review at work to look forward to and I knew in my heart of hearts it wasn’t going to have a happy outcome.

I had been finding it really difficult to sleep and often would go for a few days without uninterrupted sleep. This happened a few times prior to the day of my review. I also had an upcoming appointment with the specialist to check up on how I was doing on the ‘T’ and to get the usual blood analysis done to make sure I am on the correct dose.

So the day of my review came along and I got told some great things that I was happy about and then I got told the bad things towards the end – it was that inevitable ‘however’ moment when your heart stops you get sweaty palms and you know that something is going to come out of someone’s mouth that you were expecting but you didn’t expect exactly what was going to be said.

Now I’m sat in a room listening to all the things I could do better and thinking to myself that the past 9 months haven’t exactly been plain sailing for me. So one does have to take that into consideration.

I wonder again to myself why did I not just buckle under the pressure back then –because that’s not what I do. I soldier on and keep on going until I cannot go on anymore. I had now reached this point & afterwards I felt like shit – I couldn’t focus on my work, people were talking to me and non of it made sense. I had to get out and it had to be quick.

I ran into the toilet at work and had a moment. My hands started to sweat I was finding it hard to breathe and I slumped in the corner with my head in my hands and thought “why the fuck is this happening to me – I tried and tried and gave it everything and now I’m failing at work too!” I got my stuff and left the office – I don’t think people realised I had left.

At first I thought it was the medication messing with my brain – I had read online that some people have had really bad mood swings and others adapted to the treatment with ease. I was looking for something to blame other than myself – I called the doctors as I was in a bit of a state, my first encounter of a panic attack and they made me an appointment for the next day. I also realised that I had an appointment with the specialist the next week so I was anxious to see them and explain all the things that I was encountering.

I went to see the GP the next day and explained a lot of what had been happening and the lack of sleep that I had and the lack of focus / concentration. The GP reassured me that it wasn’t the ‘T’ and could be any number of things most likely caused by stress and the situation. I told her that I couldn’t sleep and my work was being affected and I had been waiting for a few months to be referred to see a genetic counselor. The GP was really good and took time to listen to all my issues and I must have been in the room for about 30 minutes talking to her about taking the ‘T’ – the past 9 months or so, work, previous love interests, moving and we both agreed that I was suffering from stress. The GP decided to refer me to a specialist so that I could talk to someone about everything, she even said that she wasn’t surprised after everything I had been through that it was affecting my day to day. I asked if I could have something to help me sleep as it was day 3 of 4 interrupted days of sleep – and so she prescribed me with some tablets. I only took one of them and put the rest away as I’m not a big fan of talking tablets for the sake of taking them – it did knock me out and I did feel a lot better the next day.

It’s now the day of my hospital appointment and I’m sat in the waiting room looking at all the people looking at me trying to work out what is wrong with each other. Within about 30 minutes of my appointment (it’s always running late) I am called into the consultation room to be greeted by a familiar face. One of the consultants who initially told me about the Klinefelter’s syndrome was in the room and I instantly felt relaxed as she actually seems to care – it’s appreciated when you go into a bleakly decorated room to be greeted by a friendly smile and a notion that someone is willing to listen to your story. There was also another consultant in the room an endocrinologist (hope that’s right) and he seemed okay too – if not quiet and mainly around to observe.

I was asked how I was feeling and it was at this point I got upset. I don’t normally break down but the way that I was feeling it just seemed like the perfect place to shed a few tears. They asked me how my partner was – and I think this is what triggered it as I had to tell them that the relationship is no more. I could see the look of concern on their faces as they handed me a tissue.

They then started to ask me about the treatment and had I noticed any changes within myself. They also asked if I had joined any of the organisations that they had told me about at the last appointment.

I told them that I had facial hair and I grew it specially to show them – and around the area where I apply the cream I am starting to see hair growth. I also told them about my increased libido and heightened sense of arousal and I also told them that I had a lot more energy and my focus had increased in the past three months. They seemed pretty impressed with what I had to tell them. They asked if there were any negative side-affects and I mentioned the mood swings and the lack of sleep.

We talked about the stresses and they said it could just be the situation however one does expect when your body is undertaking a change that some levels of hormone imbalance are to be expected. I was asked to keep a daily mood diary and report back in three months time.

I told them that I had not joined any of the organisations as they did not appear appealing and frankly the literature that was given to me at the initial consultation was really off-putting. I put an image in a previous blog post to illustrate this. I told them that I was writing this blog as a way to document the change and also a way to help others in a similar situation to me. They wrote it down in my notes so I guess someone will have read or will be reading it at some point.

I then left the consultation room and made my way down to the vampire room to have my blood taken. I used to get really apprehensive over needles and blood – I remember having to have special cream so that I wouldn’t feel the scratch – I also remember punching an anesthetist once who tried to jab me with a needle multiple times – I was young so it probably was more of a tap than a punch!

A few jars later – filled with my blood – I’m walking back to the office. I left feeling a bit strange as I’m doing all this by myself now. Prior to this moment I was doing it to find out if I could have children – now I know I can’t it’s a voyage of self-discovery.

When I got back to the office I put my head down and got on with my work and then left and went home to have a long hard think about my life and what I want from it. I decided that I’m going to start to put ‘ME’ first in all things that I do going forward and focus on building back up my career. It’s not nice to be told that you are not performing as expected and so I wrote down a list of things in my head and made an appointment with HR for the next day.

The meeting went well and following this I had another meeting with HR & my boss and a colleague to map out areas of improvement over the next 2-3 months, which would be measured. I’m determined to make it work, I know I can do it and I guess they know I can do it otherwise I wouldn’t be going through these improvement sessions.

So work are helping me out – they know that I have struggled with my sanity over the past 9 months or so and they are willing to put that to one side and invest in my future career and for that I am thankful.

Right so I have got my work sorted and starting to release some of the pressures of the day to day – now on to me. I had been referred to a psychologist by the GP as I was in need of talking to someone about the past 9 months and being realistic probably the whole of my life. The past decade has been filled with trials and tribulations from a long-term relationship at uni > buying a house > watching my dad suffer with brain cancer > watching him fade away > losing my job > starting a business > breaking up with my fiancé > moving from Brighton to Chertsey > new job and starting from scratch > building a new relationship > trying for children > discovery of Klinefelters > breaking up with someone I cared for a great deal > problems at work > discovery that last girlfriend has now moved on and is now pregnant!

While I am happy that she is pregnant and is getting what she wants from life and essentially is happy. I’m not a fan about the way that chapter was written. I need to talk about this with the professionals but for now I shall write about it and share my feelings with my readers.

I wanted to write about this sooner when I found out although it wasn’t my place to blurt something out there. I did pen a lot of thoughts but most of them ended up in the bin. I did have my suspicions though as everything in her life was advancing rapidly. I had heard from friends that they were looking to move in together on a more permanent basis and I was told back in January that ‘we’ would never get back together. I’m not going to lie I found this really hard to deal with. This set the inner detective inside me working on overdrive looking for clues to confirm what I already had suspected – a pregnancy. I know that we all move on and we have to overcome seeing our past lovers move on – this just felt really quick for me and I still felt raw about what happened.

It was just another day in May and I had an email asking if I would be able to arrange a date for her to collect some things and if I was willing to meet up so we could catch-up. I had been pretty emotional and got drunk and said / did some stupid things which marred our friendship so I was trying my best not to think about her too much and ignored all the emails & texts I received.

I did the complete opposite of what I said I was not going to do in my previous blog post – I turned to alcohol & food as a way to make myself feel better but all I ended up doing was getting fat and making myself feel worse about the situation.

After talking to a good friend I decided that I needed to talk to her and we could be amicable and maybe we could be friends again. I apologised to her and explained my reasons for this – we agreed on a date for collection and then we didn’t really speak after that.

I started to notice the bump appearing at work and this started to make me feel sad. I’m sad cause I’m an emotional sod and from my point of view we tried to make it work between us for 2/4 years we were together. Through this time we found out the reasons why nothing was happening; the Klinefelter’s and the infertility.

What hurts me more is that within a few months of us splitting up she was with someone new (I expected this) a month later she is pregnant (did not expect this – it’s really easy with someone new) and then 3 months later buying a house with this guy and looking forward to a prosperous future. (I did not expect this) I have been trying my best to man-up and not think about it. However it is hard when you see them walking around the office everyday – you see before you the life that you wanted. Your character in that dream you shared is now being played out by another guy – it’s a constant reminder that you failed in life again!

Failure is not an option, right? So having already been through my rebound phase – I wanted to find if there was someone out there who would accept me for my failings. I deserve to find happiness, right? I did just that I had found happiness across the ocean and the spontaneous part of me decided ‘who wants to live forever’ & so I got on a plane to meet my new love. I had an amazing time and managed to reset myself back to me again just like I did when I went to NYC!

Though when I returned home my happiness started to unravel when the situation I found myself in became less clear and more complex. I pondered – not again! I wrote a poem to sum up how I was feeling at the time;

No Strings Attached!

You must have misheard me dear
I replied on many occasions
I felt love
Yet you seemed in love with another
I wonder after your message
If ‘no strings’ is only what you wanted
Not me
The fool
Remember I am barren
Without child
I may not understand
The hardships you face
I understand life
and this life has not been kind to me
Full of deceit and neglect
I get sad,
lonely often.
Seeing Emma everyday at work
and her new man -happy & full of glee
I see the bump that I could not provide
So I am protective over my thoughts,
my feelings of love.
When I received your messages
I thought… is that all I was for you?
No strings attached!

Am I ready to love and be loved again? Is there a prosperous future for me and what is my calling in life? Which career path should I follow? Are the choices I have made so far the right ones?

It’s a tricky situation to find yourself in when you reach a crossroad in life. One thing I do know is that I have been put on the earth to help others and feel happiness through a sense of accomplishment of seeing others reach their potential. I started to talk to a few friends recently about the possibility of starting up a new charity or organisation for people like me who have just discovered the wonderful world of Klinefelter’s Syndrome. If you go to Google and type in the word – there isn’t a great deal of information about it & most of it is confusing. There is only one organisation in the UK that relies on charitable donations for funding. After reading all the documentation associated with becoming a charity it seems like it’s too much for just one person to do alone.

Therefore I have decided to start up a project involving a global funding platform. I’m hoping that through this project named ‘Project 47XXY’ will enable me to raise awareness about the condition both in the public eye and within the medical profession in order to create an understanding of its implications. This will be beneficial not only for the individual it affects but also for all those who they have contact with during life.

I’ll be continuing to write monthly blogs about the condition featuring regular project updates.

I hope that you will help me to raise awareness of this condition through a small contribution and become a founding member of Project 47XXY.

Thanks,

Dan

(You can follow the project on Twitter here)

3 A.M. Eternal!

March 22, 2012 Dan Leave a comment

I’ve been thinking about writing a follow-up post to the last post I did as lots of interesting things have happened to me since then. I’m now starting my 4^th bottle of treatment – so I’ve done 65 days or so now and there are some massive changes happening that I never even accounted for. Before I get into the details of these changes I wanted to talk about what happened following on from Kevin or Perry?

The last post was rather emotive as I had been going through quite a lot of changes – I also had to write about going to visit the genetic specialist and express my feelings and thoughts on that. I post links to my blog on Facebook so that my friends and family can read the latest news – I never expected anything like what happened following the post to happen. Never in a million years – I am very happy it did.

Firstly some of YOU spoke to me and asked me about my blog and the treatment and how it was going – I rated that. Secondly I got a hug from someone in the office who said they read my blog all the time and felt I deserved a hug – I rated that too. It was out-of-the-blue yet it was a very nice hug so if you are the ‘hug’ person and you are reading this thanks, you made my morning. Third and finally I was minding my own business in the kitchen at work making a delicious protein shake (something I’ll touch on later) when someone approached me and asked me directly about my condition and the treatment. I had been used to speaking that day to people about the blog and the reasons for writing it so I didn’t mind speaking openly to this person in a bit more detail. I’m so glad that I did. It transpired that this person (who I won’t name) has a condition that involves Testosterone replacement therapy and that they have been taking it for a number of years.

I instantly felt relief as we joked about becoming the T-Wolf , the feelings that you get when your ‘peaking’ and the rush of emotions that you face daily. For a moment I thought; ‘hang on just a minute’ – there is someone I have inspired to open up and talk to me about my condition and share with me that they know what I’m talking about. It’s the only time I will thank Facebook for delivering my blog to a wider audience and I want to thank that person directly for talking to me – thanks you made me feel awesome!

In a bold attempt to get myself looking good again following on from a rather depressing & emotive February I decided to undergo some radical dietary changes. I read at length a number of sports sites that talk directly to building muscle mass and tone. I always thought to myself whilst I was growing up that even though I did sport (not that I liked it) I never seemed to be able to grow muscles in my arms and my legs and around the mid section like my peers.

So I am now drinking a protein based drink at breakfast and at lunchtimes mixed with a small amount of cardio work out and a lot of weights and I am seeing some massive changes already. My arms and my chest feel bigger and I believe it’s down to a combination of drinking the protein shakes, being sensible about eating, working out and that magical pot of ‘T’. I read an interesting article about Rampage Jackson (he played Mr. T in the A-Team reboot) saying he was using ‘T’ as a way to boost his recovery time and also as a performance enhancer. It was something along the lines that he was rated about 600 on the testosterone scale and his competitors were naturally 1100. Apparently he wanted a slice of the action so looked to his medical advisor and was given ‘T’. I find it both amusing and ironic that he was playing a character called Mr. T!!!

Well Mr. T it appears to work for you – I can confirm that it is working for me too! I questioned whether or not its cheating – I guess if my body naturally doesn’t produce Testosterone then I’m entitled to give it a go and reap the benefits at the same time. I hear what you are thinking – ‘Dan you are still fat around the midsection’. That is true although that is down to drinking beer and this wolf is on a mission to lean up! So I’m going to be taking a hard look at the way I drink. A random ‘Tuesday’ night drinking session occurred this week and I noticed some other changes that you probably normally wouldn’t see in the daylight. A point I’ll talk about in detail later on.

Lets talk changes. I have been thinking long and hard about whether or not to write about some of these changes in my blog and share it with a wide audience. I don’t want people to think that I am a freak yet on the flip side I don’t want to keep this to myself – it’s a big deal.

Remember I talked about ‘Tony’ the one haired wonder? Since then… 65 days later – Tony has friends. Lots of friends – as you can see from this photo they have multiplied and I have thus named them Tony’s army.

I’m not sure I like them – they are making ground up towards my chest and I can see little hair holes appearing which can only mean one thing – hair-festation!

I’ve watched a lot of videos online about people reporting their progress with ‘T’ something that is apparent in all the videos is acne. I appear to be getting more spots than I have ever had. Using the ‘T’ makes the skin very oily not quite sure why this happens and hopefully it will settle down. The acne is just in the area where I haven’t had facial hair so it could be down to the fact that when I shave I’m either A) I’m not doing it correctly or B) it’s a skin reaction to the razer blade. I’ve decided to ease off on the shaving and see what growth I get – I would however like to recommend ‘King of Shaves’ Aloe Vera and Tea Tree Oil shaving gel. It’s clear and doesn’t foam so you can actually see what you are doing and makes your skin feel awesome afterwards! 🙂

I mentioned earlier about cutting back on the drink in a bid to lean up and get my body to a condition of fitness that it’s never seen before. I’m going to give it a good go and more reason to than ever before after the events that unfolded on Tuesday evening. I went out with my friend for a ‘quick’ drink after work and it turned into an all night session leading to a sore head the next day and a feeling of shame and disgust on my part for some of the things that I did L Normally when I go out drinking I’m one of these people who is a happy drinker – I’ll get annihilated and silly and usually there is a tale to tell afterwards but I will never be aggressive, abusive or otherwise. That’s what I thought – I’ve never experienced anything like what I experienced on Tuesday evening. Someone managed to annoy me – I can’t quite remember what he said to me but he really managed to press the buttons so much so the wolf turned into a rage machine and for the first time in my life EVER… I stood up to someone and rather aggressively told them to get out of my drinking space. I never ever EVER do that. I have never behaved that way before. It got to the point where the person that had annoyed me left the venue – I felt bad afterwards and it made me think that I don’t want to see that side of me again. In addition to this my cognitive functions broke down (this is normal behavior) and I managed to insult someone that I really care about and frankly speaking still love – if you are reading this I am very sorry 🙁

I’m sat up in bed at 03:07 writing this blog post. I’ve been writing since 02:00 so I thought it would be fitting to call it 3 A.M. Eternal as it speaks to change number four – Insomnia. It’s a weird feeling, I get in from work make something to eat and chill out on the sofa catching up on pre-recorded TV. Switching off the TV around midnight I get ready for bed and find myself not being able to drift off and go to sleep. Then ‘it’ happens – no I don’t go to sleep, there is some activity that just won’t disappear making my sleep deprivation issue worse.

I think over the past 4 days I’ve had about 2-3 hours of sleep a night if that. If I was lying next to a beautiful understanding woman I’m sure it would have an interesting outcome. Sadly I’m lying in a half-empty bed with thoughts of previous encounters racing through my head and the need to relieve oneself.

You probably think that I am complaining as most men my age probably would trade places. I spoke to a close man friend about this and I asked him if it happened to him or if it was just me – it would appear that it happened at a time but not as frequent and never caused him to lose sleep unless of course there was that beautiful woman lying next to him. I’m hoping that when I have a week off next week I can take a trip to the doctors and discuss this amongst some of the other challenges and also to see if there is an update on the counseling and if I can be referred privately.

This is the biggest change that I have noticed and it’s something I have wondered if I write about it or not. It’s a big deal and by reading it I hope that fellow Klinefelter’s Syndrome men, parents, friends & partners can understand more about the discovery of how the treatment positively affects our bodies.

I’ve had the experience of being in two very loving relationships. One that lasted about nine years that started from university and the other that recently ended that lasted for about four years. During this time you get to know your lover – you get to know what they like and what they don’t like and equally they get to know about you. In the back of my mind I always wondered the reasons for their departure and why they fell out of love with me – what is so different about me?

Well that question has been answered through the discovery of the Klinefelter’s Syndrome and the effects that it has had on my life – the way that I feel as a person – the way that I make others feel and my ability to love and be loved.

I’m naturally a sensitive guy who often is on the receiving end of raw human emotion and that is something that inspires me to write. I’d like to think that I am passionate about love and life and the people that allow me to love them. So you are wondering what this has got to do with change – and seeing that I have meandered off course with my writing I’m trying to think of the best way to frame this up so that I don’t make myself look like a freak!

The point I’m trying to make is that even with some of the challenges I have faced I managed to hold onto and enjoy loving relationships. What I didn’t realise was that until now I wasn’t enjoying those relationships like I probably should have done. I never felt certain sensations like I probably should have done and my interest/libido probably wasn’t where it should have been in respect to my partners and their previous encounters.

Now after 65 days of treatment this all appears to have changed as the person who spoke to me at work put it – as soon as you start to take the treatment you will feel a ‘sexual high’ including the notable early morning blood rush as mentioned in the previous change. The intensity and duration of certain sensations is dramatically different and then this made me wonder – is this normality?

I spoke to one of my previous encounters and she asked me directly if I was sure it’s down to the treatment and if I ever faked the sensations whilst I was with her. It’s not about faking it and it’s not about that person either – as I had felt the same through all of my sexual encounters. Don’t get me wrong the experiences that I have had were great – but take that level of greatness and add a x 100 multiplier to it and well – mind blown! I did some research online and found that several guys had reported improvements after taking the ‘T’ – talk about a performance boost Mr. T!!!

Final thoughts…

Kevin or Perry?

February 19, 2012 Dan

It’s been an emotional roller coaster of a week this week. A LOT has been playing on my mind recently. One of those weeks where I have been wishing I had the opportunity to restart and reload a previous save game -oh if only life was like a video game!

St. Valentine you have a lot to answer for mister! I’ve been missing someone who is a friend for life although has made it clear that she no longer has feelings for me. It has been extremely difficult to deal with this, this week more so than others. When you have been in love (REAL love) it’s difficult to turn those feelings off overnight, life takes time to adjust. You can runaway and do things to take your mind off them for a moment, yet the process is still running in the background eating away at your core.

Now I could have probably dealt with the situation better if I didn’t have another layer running on top of this process. The hormones! Each day I’m fueling my body with replacement Testosterone. My body has been missing this natural chemical over the past 16 or so years so for it to appear all of a sudden makes every day feelings & situations appear so much more intense than they did before.

Adding to the tension, on the Thursday after V-Day. I had been allocated an appointment at Epsom hospital to see a genetic counselor. Or so I thought. This is what I really wanted to talk about.

I arrived at the hospital in good time and the letter stated that the appointment was in the maternity wing. I immediately felt uncomfortable about this when the letter came through – however I thought there must be a connection somewhere.

Upon entering the hospital I walked to the maternity wing and it was like a scene from ‘One Born Every Minute’. Parents-to-be wandering around the corridors looking for a place to check-in. Midwives drinking cups of tea and eating cake could be seen from down the hallways. I walked around the corridors for a while searching for the outpatients part of the wing & all I could find was a room by the entrance with the words ‘Ante-Natal Clinic’ written on the doors.

I thought to myself that this clearly could not be the place that I am having my appointment and walked through the room getting strange glances from the parents-to-be and also the staff. I must have walked through the room several times and it was only when I decided to walk back through the room from a different door that I realised I was in the correct place. The name of the person I was going to see was scribbled on the wall behind the desk. I’d obviously come in from another angle so missed this sign completely.

Standing in the queue to speak with the receptionist I began to shed a tear or two. My emotions had kicked in when I saw parents-to-be & parents with newborn children looking back at me. It was almost as if I had a sign above my head saying infertile. I felt extremely uncomfortable in this room & began to resent coming to the appointment – it felt like a sick joke on behalf of the NHS. As I approached the desk the lady asked if I was okay & that she had seen me walk through the department a number of times before joining the queue. I had managed to get myself into a state at this point so I just politely said that I didn’t think this would be the clinic for me & explained that I had come through another door and missed the sign with the persons name on. I was asked to take a seat & the only one available was by the children’s play area – great!

I could feel myself getting more and more frustrated at the thought of waiting in that room with the parents-to-be. So I started to look around the room to take my mind off things – I felt worse. Everywhere I looked I could see a board that either said ‘how to breastfeed’ or ‘how to change a nappy’. Above me there were interactive displays with offers on baby food or nappies. Thanks for being so insensitive NHS!

I had only been sat down for about 5 minutes and that felt like a lifetime. I was getting ready to say something, restraining my anger by biting my tongue. Then a mother and her young child came and sat by the play area. I felt obliged to give my seat up and I stood towering above everyone with them all looking back at me. I felt in my mind as if they were chanting INFERTILE, INFERTILE, INFERTILE!

Stop this mind torture someone please as a few more tears ran down my face! I then overheard the woman that I had just given my seat up for saying to her young daughter that sometimes she wishes she had never been born. The chanting in my mind stopped & the focus turned from me to her. It was at this point when I thought to myself I’m going to either have to leave or say something to her; ‘you don’t realise how lucky you are!’ – and it was at that moment I heard my name being called through.

I entered the room after 15 minutes of mind torture and the very nice lady (sadly not Deanna Troi) asked me how I was. Any other day I would have been polite – on this occasion T-Wolf stepped in and said ‘sitting in that room made me feel very, very uncomfortable’. I think she could tell that I was feeling upset and sat me down and apologised for the location of the clinic. Agreeing with me that it was insensitive and would pass on my feedback.

We spoke at length about my condition, about what I thought it was and what it really is and why it happens. I started to understand it a little bit more than before, as she was very good at explaining the reasons why. When you are sat with an expert on genetics who takes the time to draw diagrams and illustrations you know that you are in good hands. I told her about this blog and the reason that I have set it up to help family, friends and others understand what changes I am going through at the moment. It then occurred to me that this was not a session of genetic counseling as I thought it was going to be. Although at the time I didn’t mind too much as it was very insightful.

We discussed that I had been through a lot in the past 6 months; work stress, the condition, bereavement, relationship breakdown and more recently starting the T. It was decided that I would benefit from seeing a genetic counselor to work through everything that is happening to me so that I can come out the other end feeling happier about the future.

We then spoke about what happened when I was initially diagnosed with the condition and what affect that had on me emotionally and also about what was offered to me in terms of finding if any sperm did exist within me. The consultant in Guildford told me that there would be a cost to have a micro-dissection of the testicles done to find sperm. The cost of which would be in the region £5,000 and would not be funded by the NHS. I asked at the time what the chances are given my condition and it was 50/50 – it’s a lot of money to gamble on chance. At the time it was an emotional roller coaster having just found out that I couldn’t have children through normal means put a lot of pressure on my relationship and also on me as a person. I let myself go & pushed away the person that I loved and now as I write this with tears in my eyes I wish I had known then what I was told on Thursday as it might have made a difference on the way I behaved – “Can I restart that level again please?”

There may be a chance that I can get the operation for free. If there is a chance I will gladly take it whatever I need to do. I couldn’t help but think that maybe if we had been told this at the start, things now could have been different today. It’s a snippet of hope that in my mind is life changing!

I then told her about the god awful pamphlet I was given with the picture of what can only be described as not your every day man on the front – below for your enjoyment!

This was another reason why I decided to write this blog – I looked at this picture with my partner at the time and we both came to the conclusion that this looked like a stereotypical gay man – what were the NHS trying to imply that every man with an extra X chromosome is gay? I am not! I like T&P!

The session ended on a high! There is a chance that I can get the operation I need for mind closure for free. There ARE people who I can talk to and work through the emotional issues. Despite the initial tears at the start of the appointment -upon leaving I started to feel much better about the future!

I had the opportunity to ask a few questions. The one question that I needed to know the answer to is “by taking the Testosterone am I going through puberty again?”

– “Yes Kevin you are!”