Paul's story may make you weep:
I original wrote this on the 18th April 2004:
When I went through puberty I realised I had an undesended testicle that had gone unnoticed, something that eventually led to me physically stretching the testicle so that it came down into my scrotum (I guess I did this to try and look "normal"). The testicle hung and still does hang in the scrotum though not as low as the other one (ive been afraid to ever mention how it was through embarrassment and fear of the suggestion of having it removed. Ive also noticed that my testicles are very small. I was very excessively overweight during puberty and didn't take an interest in girls until quite late about 16. That said once I was interested in the opposite sex I was doing all the things that any young man would, lets just say I was very interested.Also I have always had very little body hair, couldn't grow a beard and had very little underarm hair.

When I was 17 I was diagnosed as having primary liver cancer. I was very lucky to survive having a 10hr operation and follow-up chemotherapy. Apparently testicular atrophy is associated with liver cancer but to this day I'm not quite sure what that link is.An oncologist stated that I had very small testicles, but didn't say that this was a problem or suggest treatment.

I don't know whether or not the chemotherapy lowered my sex drive or not (it's hard to look back and say) but many yrs later I had found problems which i'll explain later.A long time after my illness I was eager to become "normal", become a healthy young man. This desire was probably more important to me than that of other people following my illness.I started doing weights down the gym, it was going great for a about 6 months and then came the crash. I became physically exhausted at the slightest exertion and stayed this way for 6 months. After this time I tried going back to the gym again ok for about a month and then crash again. Given this and the fact that I struggled to put on muscle mass I gave up on the gym.

After another six months I tried swimming, I built my fitness up slowly until I could do about 25 lengths of the pool each day, everything was great and then came the crash once more (I couldn't do 2 lengths).I became a physical wreck for about 2yrs, having hundreds of different tests.

I was told I had Chronic glandular fever (because I had this for about a month) even though results kept coming back saying this wasn't the case, ME or chronic fatigue syndrome were also muted.It was around this time that I also became embarrassed about my chest which I thought was very flabby, I had always been embarrassed by it and would never ever take my top off in public.

Anyway I had stayed clear of the cancer and met a girl and got a job.

My health became less of an issue to me and I was happier. After a few years I did virtually no exercise at all and never suffered from the fatigue any more. When I occasionally did exercise I sweated profusely and noticed that I had little stamina, less than people much fatter than myself. That said I had put on a lot of weight (I always cursed my metabolism and thought It was unfair I put weight on more than others)After 5 years of life I became worried about my weight and long term health and quit my career and returned to my native North West England. I took up sport and played tennis daily. I lost lots of weight but no matter how much I tried I couldn't lose the weight on my chest (this was psychologically very scaring and still is) and even when I was running 20 miles a week (something I built up to over the course of a year) and eating very healthily I still carried more weight than friends who did no exercise at all.

Having been in North West England for about a year I decided to embark on a new career.

Being an avid tennis fan and fairly good at the sport I decided to get into coaching. I qualified as a tennis coach and got a good job in Bolton at a David Lloyd centre. Unfortunately no sooner had I got the job I had to give it up due to a mysterious injury to my arm. I went for physio and eventually after a year saw an orthopedic surgeon. They took scans I told me I had Osteochondosis and that the tennis coaching career was over. I was told the condition is usually caused in childhood by trauma, but I had no such injury. I have quite thin arms despite being very active and I believe the condition may be connected to low testosterone as I have read it causes osteo type conditions.
Anyway with the tennis career gone I plodded on kept up playing tennis and running and eventually got a part time job, but then the long forgotten fatigue of yesteryear returned. My concentration was none existent, I was driving my car on auto pilot and driving the wrong way to work and putting cornflakes in the fridge...daydreaming a lot and mentally dull, like I was on medication. It was bad and I had to go on the sick. My libido was none existent, something my girlfriend wasn't too happy about. I also noticed that my erections were very weak and I was unable to climax in her something that I could only reach via masturbation.

I should say that I have also suffered from depression and more latterly profuse sweating when exercising (something that I now rarely do) and dry skin.I could no longer accept my situation and decided to raise the health issues I had with my oncologist and look into the matter. I was told they would probably never find the problem. I had the test for Hypothyroidism (I suspect that this test has been done countless times over the years) I held my hopes out for that being the cause, but it wasn't.

I went back to my oncologist and told them of some of the embarrassing symptoms and straight away I had a testicle examination, once again they said I had very small testicles. Following this they immediately sent me for a testosterone test. It came back as 11mnol. I was told this was low normal and it was nothing to worry about but a referral to an endocrinologist was made.

I looked into the subject on the net and found that for my age 29years old that 11mnol is not at all normal. That two thirds of 75year olds have a higher level and that only 1% of men between 30 and 40 have a lower level. That I had all the symptoms associated with low testosterone. I also found a link to a gyneocomastia site and discovered that the embarrassment and shame I have suffered for years has a name and is probably the result of low testosterone.

I have been told I may have to wait upto 3 months to see the endocrinologist. Every day has been a nightmare for me. I want to have an op for the gynecomastia (I have had to leave a part time job through the shame of my appearance in shirts as much as through the problems of fatigue and depression) and receive testosterone gel therapy on prescription.I have gone online and ordered Testogel without doctors advice (I will tell the endocrinologist when I see them though). I have taken 5g @ 1% for about a week.My depression has gone; I have energy not seen in years. I feel mentally sharper than I have in years, I’m not daydreaming or making mistakes from fatigue and my libido has returned and I have erections much stronger than I have ever had (it caused me to remember that the first proper girlfriend I had ever when I was 21 said that my erections were a lot softer than her ex-boyfriends).
I had cancer for a second time in 1999 (my original cancer was in 1991) at the time I had the surgery and didn't require further chemo and I pretended it didn't happen, just blanked it out. I never spoke of it with my girlfriend of that time, didn't tell my parents I was going through cancer again. I moved house half way across the country and changed jobs and never told my new employers, taking holidays to go for check ups.I got through it.

Recently I have had tests for heart problems caused by the chemo from my original treatment (doxorubicin and cisplatin). Again I am getting through it and I feel little need to discuss these problems. I guess its because I know that with cancer or heart problems its a case of crossing my fingers and hoping for the best. But with this, well I have always felt there was an underlying problem that could be labeled and treated, but for years has not. It has also made me question who I am and make me feel inadequate, something that the other problems have not. From a quality of life point of view this has been devastating, mood swings and depression for 13 years chronic fatigue, etc., strangely enough more so than cancer.

I wrote this on the 29th April
Having seen DR V I have been told that I have all the symptoms of hypogonadism. Following an examination and in view of my previous blood tests he told me “You undoubtedly have a problem that required treatment”, and he said “don’t worry we’ll sort you out”.Following this appointment I broke down and cried.Something I had never done in my life even when diagnosed with cancer. It felt quite momentous, for the first time in years, I had my condition recognised and felt that there was light at the end of the tunnel.Dr has set up some tests to establish why I have the condition. A pituitary scan, done density tests and some dynamic blood test will tell me whether the condition is caused by my hypothalamus/pituitary or my testicles not working correctly.I have been off treatment (testogel) since the 20th of April In order for the dynamic tests to provide DR V with relevant pathology I was told by Dr V to come off the Testogel prior to this appointment (20th of April) and need to stay off it until the tests are taken.I told Dr V that I was feeling very, very nervous and that I couldn’t even be around people. He said that this was a symptom of low testosterone and that I had to bare with it until the bloods were taken but that I could go back on the treatment as soon as they were done.

I wrote this on the 6th of May
I have just found out that I have to wait until the 24th of this month before I can have my complete testosterone blood test. I can't go back on testogel according to my Dr until then. I have been off testogel for 18 days and feel like I'm going crazy, all the symptoms have returned but are much worse! I Sweat at night and have insomnia. My nerves are so bad you wouldn't believe both night and day. I don't/can't leave the house or even see people I’m that bad.I have had to constantly ring Dr’s secretary and the endocrinology nurses to try and get the appointment brought forward. I feel as bad as I’ve ever felt in my life, just functioning as me is impossible. I don’t like to complain and fuss, but this is a lot worse than chemotherapy and I’ve been like this for weeks!!

I wrote this at some point between the above date and the 14th of May
I have managed to get the appointment for bloods brought forward thank God. I haven’t been out of the house in almost a month apart from attending my previous appointment as my nerves have been shot to pieces (I have never suffered from bad nerves before) and I have been feeling so bad
I wrote this on the 14th April
I have had the dynamic blood tests and I am now able to go back on Testogel as Dr V stated.Within an hour of taking the gel I have felt much better in myself. The nervous disposition was the first thing to go. I can go out of the house!!!!!

I wrote this on the 26th of May
Every single symptom has either gone or improved on the testogel with the exception of the gynecomastia which may be getting worse. The nervous problem has not returned. I have much great energy levels (I've been playing tennis again), my concentration is far, far better and I feel mentally much sharper. I have a far more positive feelings, my mood is always so much brighter. My libido is still down but not to the extent it was, erections have greatly improved. I appear to be putting on muscle mass on my arms something I’ve never really done. This is in spite of the fact that I’m only playing tennis the same amount I used to. I am even needing to shave more, something I rarely did.

I wrote this on the 2nd of June
I went to the hospital today to see Dr J, one of Dr V'sI am shocked!!!!!!! He has told me that I do not have hypogonadism, that all the results came back normal and that my GP could withdraw the prescription of testogel .He told me that my pituitary function LH FSH had come back normal and that my total testosterone was 10.2nmol.That although the total testosterone appears to be subnormal and require treatment that it does not as my shbg is 13, which means using that he calculated my free testosterone as within the normal range.He has said that he will put in place a referral about the gynecomastia with a view to an operation.
I asked if I could have my estrogen tested, but he said it wasn't possible to test for estrogen in men.My feelings are that his calculation is wrong. I believe I DO have hypogonadism and have since found that the American Association of Clinical Endocrinologists and The Australian Institute of Endocrinologists both disagree with his calculation in assessing my condition.I have also subsequently found that it is possible to test for estrogen in men. I am not at all happy about my position and treatment following this appointment and am hoping that matters can be resolved when I see Dr V on the 10th of June.I am very worried about the idea of being refused future treatment. Going back to how I was prior to treatment would be devastating and utterly unthinkable.

I wrote this on the 10th of June
I met the Dr today and he told me that I can have either the operation for the gynecomastia or the treatment for hypogonadism. .I asked why this was the case, it was my feeling that if he felt both conditions were legitimate and would treat either of them, then surely he should treat both.He said that in some cases testosterone therapy resolves gynecomastia, but admitted this was only in the minority of cases. He went on to say that he would only be prepared to refer me for surgery for the gynecomastia in six months time.I was/am very very upset over this. I have gone through a lot in my life and feel I am being made to needlessly suffer, that this was mind games from the doctor. I don't think I would have to suffer in this way if hypogonadism wasn't on the fringes on medicine.
I said that if it is a choice between the two, I would have to choose the treatment for hypogonadism.The gynecomastia is so bad that I cannot return to work, (without surgery soon I will be fired), go on holiday or even go out in most settings, but I can still function, if I stay in the house as a virtual recluse.Without treatment for hypogonadism I cannot function properly anywhere, so I have chosen to suffer the lesser of two evils.

Having done some research, I asked if I could be prescribed an aromatase inhibitor to help resolves the gynecomastia. He said he would not prescribe this, as in most cases it doesn't help resolves the problem. I do not understand the logic; I cannot be prescribed an aromatase inhibitor, because it only resolves gynecomastia in a minority of cases, but I am forced to wait six months for an operation when testosterone therapy only resolves gynecomastia in a minority of cases.
I have two related conditions; I am treated for one condition and denied treatment for the other. According to the American Association of Clinical Endocrinologists Guidelines for the treatment of hypogonadism, there is no contradiction in treating the two conditions simultaneously.

They say quote "Many men have psychological problems resulting from gynecomastia. This problem should be taken seriously and discussed with the patient. Use of aromatase inhibitors, such as testolactone has been tried but yielded limited benefit. A breast reduction surgical procedure is often required for psychological well-being."
Why do I have to fight a battle for treatment, just to try and live a normal life?