Discussions By Condition: I cannot get a diagnosis.

14 months trying to get a diagnosis

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: bigron008
  • March 26, 2010
  • 02:16 PM

I am a 40 year old man.

February 2009 I started getting real pains and discomfort in and around my left testicle. The discomfort was constant and like a drawing feeling. Almost a feeling as if someone were pinching right up high behind my testicle and pulling back towards my anus.

I went to see my GP at the time because of the pain and the fact that I kept feeling like I wanted to pee and that when I did it burnt and I felt like my bladder was still full.

I was told that I had epididymitis or prostatitis. I gave a urine sample, which was apparently okay, and after a prostate examination I was told that my prostate was enlarged slightly.

I was prescribed a course of antibiotics. Unfortunately, I had an adverse reaction to some of these and suffered chemically-induced depression while on them. I also completed a PSA blood test the next week. I wasn’t told what one of these was, simply that I had to do one. When I looked it up, of course, there were mentions of cancer. After a wait of a few uncomfortable weeks I was informed the result was okay.

A few weeks later I went back to the GP as my symptoms had not improved.

No examinations were made of me but I was told that I may have Benign Prostatic Hyperplasia (BPH) as well, or instead. I was prescribed a two month supply of Tamsulosin and off I went again.

The Tamsulosin helped with my urinating and my ejaculations became runnier and easier, whereas before my ejaculate had been very clumpy, thick and somewhat uncomfortable.

When the two month supply was running to an end I put in a repeat prescription to my GP, expecting it to prompt a review. Instead I was given another prescription for a further two month's supply.

I thought, 'Well, they must know what they are doing'. So I took the medication for two months.

Symptoms of being pulled were a little easier but not gone.

I put in another repeat prescription and got it with no questions so I decided to go back to the GP. By then I was experiencing strong abdomen pains on my left side, my testicle pain had worsened and my stools had changed. For about a month I had not passed a stool like a rounded sausage. My stools had been like flattened sausages throughout (looking very similar to the crisp snack called a quaver) and I would feel a lot of discomfort after peeing.

I explained all of my symptoms and the GP re-iterated that he suspected I had prostatitis. I should carry on with the Flomax and see how I got on.

A month later (now September 2009) I went back to the GP and complained of exactly the same pains and discomfort and the same change in my stools. I expressed my concern at being told already that I may have Epididymitis, BPH and Prostatitis. Not being a professional I now had no clue as to what if any of these I had but I knew I was still in pain and discomfort.

The GP referred me to a Urologist at the local hospital. I then saw the Urologist in November 2009. I completed a urine flow test. Had my prostate and abdomen examined, along with my testicles and was told to stop taking the Tamsulosin, as my urine flow was ok. He suggested to me that I may have kidney stones.

The Urologist informed me that he would be writing to my GP. I received a copy of this letter a few weeks later and in it the Urolgist said that he suspected I had a Urinary Tract Infection (UTI) and that he wanted me to have a CT Urogram.

Not knowing how long these things take to organise I left it until the end of January 2010, having still heard nothing about when the CT Urogram was to happen. I contacted the hospital and apparently I should have been seen before Christmas. Hastily an appointment was made for me for the second week of February 2010.

I completed the CT Urogram and then waited three torturous weeks for the results. In desperation I rang the Hospital and was informed that they had the results and ‘Would you like us to fax them to your GP?’ Of course I would. I made an appointment to see my GP. By now I was in increasing discomfort and pain with my left abdomen, my left testicle, my stools had remained completely flattened and while I was passing stools I constantly felt as if I hadn’t passed them and I was still ‘full’.

My GP informed me that the CT Urogram showed no problems – good news, my waterworks were okay, but I was still in pain. He decided to refer me to a Rectal Consultant to see if the problem was in my bowels as, he now informed me that, ‘All of your symptoms are indicative of a tumour’ and that the testicle pain was referred pain. Not the kind of news I wanted.

He decided to refer me under the Government’s two week rule and by the middle of the second week I had seen the Colo-Rectal Specialist. He examined my back passage and asked questions about my symptoms and then said that he wanted me to have a Colonoscopy.

Two weeks later (yesterday) I had my Colonoscopy. Following the procedure I was informed that they found nothing untoward – no tumour, no polyps, no inflammatory bowel disease. That’s great news once again… but why am I experiencing this pain, discomfort and such a drastic change to my stools?

I still haven’t had the report-back meeting with the Urologist, that happens early in April; and I still haven’t had the report-back meeting from the Colo-Rectal Specialist, that happens at the end of April and I only had my Colonoscopy yesterday anyway.

Meanwhile, my symptoms continue. Friends and colleagues have noticed the difference and how I sometimes struggle to get through a working week. I’m often having to take my time to do things, consider how far away I may be from a toilet and also try to ‘hide’ this as there is far more to me than this ‘condition’ and I don’t want it to become the conversation piece it could potentially be.

I am so thankful for the support I have received from my wife. I know that it hasn’t been easy for her, especially given that she lost her mother to Pancreatic Cancer in October 2009.

The one major thing that I have learnt from this whole experience to date is that sadly it feels as though it has been me pushing all the way to get a diagnosis – something that still eludes me. The GP and the Consultants have all been very slow to react, have often not fully listened to what I have said to them and really it has only been the fact that I keep going back to them every so often that they even know I am in pain. They have furnished me with so many reasons for my symptoms and given me so many conditions, many of which have the potential to strike fear as a potential diagnosis.

A lesser person may have crumbled and I do not say this to ‘big myself up’ but simply to demonstrate just how much support someone going through this kind of experience needs and how much of a vital role the GP and Consultant should play in this support, not just in seeking out a diagnosis… something I still crave.

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