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Personal blog update.

I had my yearly appointment at the Royal Free Hospital in London this week with Prof. Pierre Bouloux.

It was a short appointment but worthwhile. I managed to get a new prescription for the Nebido injection, picked up the injection from the hospital pharmacy, blood tests take and had the Nebido injected by the endocrine nurse all in the space of 3 hours.

I have been on Pregnyl (hCG – human chorionic gonadotropin) for the past year or so. I enjoy being on hCG as it gives a natural testosterone supply. I think I feel better with the natural testosterone instead of the injected or gel form. Unfortunately Pregnyl is not now available in the UK. There are a couple of alternative forms of hCG (Ovitrelle or Gonasi) I could take but neither are licensed for male use. I might try to get on to these at a later date once I have a new GP.

Instead of hCG I have been on the gel for a few months which I never enjoy taking. I used to use Testogel which worked ok but even that was not available so I had to use Testim gel instead. I do not like the Testim gel at all, it is stickier than the Testogel and seems to take even longer to dry.

Until I can use hCG again I will be content with the Nebido injection (testosterone undecanoate). I have been on it in the past and it seems to work well for me. I have noticed a difference in the first couple of nights after taking the injection with better sleep and even a couple of “interesting” dreams which I do not often get.

I have been working on the Wikipedia Kallmann syndrome website trying to keep the information up to date and keep the article useful for patients hopefully.

I have been talking to fellow KS patients both in the Facebook groups and other social media. I enjoy talking to other patients from all over the world. I try to meet up with fellow patients as often as I can. Hopefully a couple of KS friends are visiting London from overseas this summer, it will be good to meet up them.

 

 

 

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Kallmann syndrome patient story – Jason Russell.

Treatment progress in male Kallmann syndrome.

Kallmann syndrome treatment. Testosterone treatment started at 18 years of age.     3 photos showing progress at 18, 20 and 22 years old.

You Tube channel link: TheHilariousGales.

Testosterone treatment with exogenous testosterone in the form of injection, gel or pellets or natural testosterone production, in some patients, with injections of human chorionic gonadotropins (hCG).

Even though standard hormone replacement therapy does not normally induce fertility in either males or females with Kallmann syndrome or CHH it can produce a marked difference in physical appearance with the development of secondary sexual characteristics as well as increasing libido and improving general wellbeing.

 

How to handle living with KS. A patient’s experience.

Jason Russell is a professional fitness trainer and mind and body specialist in Australia. He also has Kallmann Syndrome. This is an extract from a post he made in one of the KS Facebook groups recently. Jason is keen to help fellow KS patients and would be happy to talk to fellow patients.

How to handle living with KS. A patient’s experience.

Another question which was asked to me was: How do I handle it mentally?

(Warning also a long post, boil the kettle and have a cuppa or tea or your favourite beverage)

Before teenage years I looked similar to every other boy (just shorter) which I did get picked on a fair bit by bullies, that’s another post. During the teenage years I fell behind, hormonally (thanks Jase we already knew that), lacked hair where hair was meant to grow, voice was still high pitched and libido was no where in sight; more interested in cake and sports.

KS is mentally tough and tiring and quite messed up. It warps our beliefs, opinions and thoughts on ourselves, seek acceptance from others instead of ourselves, have negativity and fears that are not real.

Where do I begin ? I could write forever just on this!! ill try to be as short as I can (being 5 foot 2 short is the only way I know how) but add as much value as I can.

It is sooooo important for anyone to look after our minds (especially us), as times can get tough, thoughts can get dark. Our thoughts on us with KS can get the better of us.

You can feel very isolated thinking you are the only person in the world who has this. It’s where groups like this are quite amazing at connecting us together.

Can feel very violated with doctor check ups and folding around an area you only want your loved one to be feeling around.

Can feel very confusing and worrying when everyone else is progressing physically and we are not.

It’s important that we speak to someone else about our challenges (Yes guys and girls it’s ok to talk, mainly looking at the guys coz so many of us, yes including me have been too proud early on to talk to someone) this helps share the load and its easier to carry our challenges because they are out in the open and someone else can share an unbiased opinion or thought and can help

Something else that helped me mentally, was through sport and gym. Played tennis and cricket for years. It was good to focus ALL my energy on something I was passionate about and got decent at and took out my frustrations from being bullied into the game and kick the other players butts!

NOW it’s more so in the gym and training to be the strongest leanest and most confident person I can be so that KS does not affect me as much as it used to

Late in my 20’s I started reading books which I perceived to be “self help” because I thought I was broken and needed help. PS: YOU ARE NOT BROKEN AND DO NOT NEED TO BE FIXED. YOU ARE PEFECT THE WAY YOU ARE, NOW MAKE THE CHANGES THAT YOU WANT TO MAKE

TO BECOME THE PERSON YOU WANT TO BE that is under your control.

I love reading, and I love writing. I write to be able to share experiences with you all and help those who maybe struggling with things and need a different perspective (neither right nor wrong but just different)

I found finding your passion can help massively. Finding out what you love doing, helping others, learning as much as you can and being the best version of yourself. Listing everything that you love about yourself. and not giving a rats ass about what other people think of you only YOUR opinion counts, mine doesn’t even matter to you, if you agree with my opinion its because YOU see it also

Your mind can be your best friend OR it can be your worst enemy choose to use it wisely.

 

Jason’s Facebook page.

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We have a number of Kallmann syndrome patient groups on Facebook, with various privacy settings. They can be a good way of interacting with fellow patients from around the world and share experiences and questions about the condition.

Kallmann syndromer’s Group on Facebook.

This is the largest of the groups on Facebook. Its privacy setting is “closed” which means other people can see the group and who is a member of the group but they can not see any of the posts within the group.

Has KS made it harder to be in a relationship ??

Jason Russell is a professional fitness trainer and mind and body specialist in Australia. He also has Kallmann Syndrome. This is an extract from a post he made in one of the KS Facebook groups recently. Jason is keen to help fellow KS patients and would be happy to talk to fellow patients.

Has KS made it harder to be in a relationship ??

Right at the start, when everyone else was getting into relationships and going “all the way” I was more interested in sport and food.

First girlfriend I had lasted about 6 weeks and first three I feared what she thought about KS and “size”. I didn’t want anyone else at school to find out. I didn’t want to feel the rejection if she left because of it. I found it extremely difficult to be intimate because I was fearful for what she would think.

Biggest relationship before this one lasted 8 months. she was very insecure and abusive. at one point she said she was going to leave because of the KS, and compared my size to her younger brothers. (her insecurities not mine)

There are a couple of examples of difficulty (plenty more)

HOWEVER it has taught me to dig deep into finding out who I was, becoming more confident in me, learning to love myself with KS before I could enter a relationship and be confident with who I am as a person as well as the size.

I’m no expert in this however would like to share experiences. If you would like to read more have a read in the comments

Relationships have been tricky right from the start (this isn’t about a poor me party) but I am sure that it can benefit others)

you may have these thoughts
– fear of others finding out
– fear of rejection
– fear of being intimate
– fear of not being good enough (as a person or in bed)
– fear of “size matters” (which it doesn’t matter as long as you know how to use it which means jumping in the deep end, literally and practicing)

You can minimise these fears, by appreciating who you are as a person and focusing on what you can do, loving yourself unconditionally (I know easier said than done, I know I been working on myself for years I know how challenging it can get)

If you love yourself you cannot get rejected by others because their opinion does not matter in the slightest only yours does. if they care than they don’t deserve you in the first place, if they love you unconditionally KS and all then there will be no rejection.

At some stage I have felt not being good enough as a man because I couldn’t produce testosterone. and felt unworthy as a person. HOPING not many of you have felt the same, however most likely have been one or two felt this way. TRUTH is you are worthy as a human being, everyone on this planet is here for a reason, and we are meant to fulfil the reason we are hear, you just have to figure out what your purpose is (challenging but worth it)

SIZE, GUYS it does NOT matter, you CAN still give a girl a bloody good time and have her enjoy every minute of it no matter the size (took me ages to register but its true)

PS.. in relationships it must be loving unconditionally from both parties, you love them and they love you KS and ALL. if they don’t love you for that then they are NOT the right human you should be spending your life with.

you need to find out what each other value in life and relationship, be authentic, trusting, honest, caring, sharing and more

ALSO there are other methods of pleasing a girl or guy, than being well equipped.

Jason’s Facebook page.

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We have a number of Kallmann syndrome patient groups on Facebook, with various privacy settings. They can be a good way of interacting with fellow patients from around the world and share experiences and questions about the condition.

Kallmann syndromer’s Group on Facebook.

This is the largest of the groups on Facebook. Its privacy setting is “closed” which means other people can see the group and who is a member of the group but they can not see any of the posts within the group.

New You Tube video uploaded on information links and treatment update.

 

While on treatment my testosterone level is normally around 10.0 to 11.0 nmol/l (288 to 317 ng/dl). Without treatment my testosterone level is below 1.0 nmol/l. I spent my entire teenage years with virtually no testosterone at all. I did not start treatment until I was 24 years old.
My test results on this video showed a level of 2.6 nmol/l (75 ng/dl) this is when I was on Pregnyl or hCG (human chorionic gonadotropin). The dose was not high enough for me and was not giving me a high enough level so I switched to using the gel soon after. Pregnyl was not easy to come by at the time so I was only using about half the dose I should have been taking.
Normally I get better levels while on Pregnyl and I prefer to have a the natural testosterone hCG can give me rather than the injected form. When I have been on Nebido  (testosterone undecanoate) in the past I have achieved testosterone levels of over 20 nmol/l, so that is always an option to go back to.
I will hopefully switch back to using hCG at a higher dose as soon as I can. Pregnyl is no longer available in the UK so I am going to have to see if I be prescribed an alternative form of hCG.
I am always keen to try out fertility treatments. There is a treatment involving the GnRH pump which is only available in a small number of countries. If I ever get a chance to get onto that I would jump at the chance.

Twenty four hours with a sense of smell.

Anosmia is one of the defining symptoms of Kallmann syndrome. The sense of smell might not appear to be the most important of our senses but you do miss out on sensations and experiences that other people take for granted.

Jess' Journey

Not having a sense of smell has always been my “party trick”. I’ve never smelled a rose. I’ve never smelled a fart. I’ve never smelled a skunk that everyone in the car complains about. I’ve always imagined a life with a sense of smell. How different could it be? What exactly am I missing out on?

I’ve always wanted to wake up to the smell of something cooking. I’m not a big breakfast person but something tells me I’d love the scent of cinnamon rolls. A fresh pot of coffee paired with the most delicious breakfast food ever sounds like a beautiful start to the day. After soaking up the new scent, I’d love to take an adventure to a public garden. I’ve always wanted to know the difference between a tulip and a rose. Other than their color, what sets them apart?

This day would have to take place…

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