Hydroceles and undescended testicles.

[Writerwannabe83]

Can I ask people please of their experiences with their sons being diagnosed with a hydrocele or an undescended testicle?

When it was detected and what treatment was needed? And how quickly was the treatment given?

I'm asking as I'm currently in the process of deciding whether to put a complaint in about my own experience and so I'm interested how mine compares to others.

Thank you.

My sons is three years old, and has a hydrocelw which was picked up at the age of two. My understanding is that he will need corrective surgery for it but that there is no rush for it to be done, and we are waiting until we are living in the UK again to get it done. I have been reassured by several doctors and surgeons that there is no impact upon his future fertility by waiting for the surgery.

Does this tie in with your own experience?

Well, I was told at birth my son had a hydrocele and that it was nothing to worry about and just return at 12-18 months of age if things still looked uneven with his scrotum.

I did as they said and contacted the GP at 15ish months of age as his scrotum still didn't look symmetrical. DS was referred to have an USS so they could assess the amount of fluid present but instead they discovered he didn't have a hydrocele at all and in fact the reason his scrotum looked odd/uneven was because there was only one testicle.

I'm just curious as to how soon after birth are babies referred for hydrocele repair to see if the return time scale I was given of 12-18 is actually quite long.

I was told at 2 years to wait at least a year before surgery they did check for both testicles though

An actual hydrocele is usually expected to self resolve within 12 months, so it wasn't bad advice to recommend you get it followed up after this time. BUT, a hydrocele is very different from an undescended teste and I'm a bit as to how they mixed them up. Unless he had an undescended teste and hydrocele.

My DS was diagnosed with an undescended testicle at birth. We were told to wait and see. At 4 months he had a very serious urinary infection treated at hospital. The very nice consultant noticed the testicle and our GP referred us to his clinic when it still hadn't descended at 18 months. DS had a clinic visit a couple of months later with the nice consultant, who operated on him a couple of months after that. Day surgery, no complications and DS has been fine ever since.

Blueberry: do you mean the hydrocele was picked up at two years and you were told to wait another year to see if it self resolved?

At his birth and at his 6 week check I was told that both his testicles were in the scrotum.

If they thought both his testicles were in the scrotum and believed he had a hydrocele then the advice you were given was appropriate based on their findings. Just sounds like unfortunately they may have been mistaken.

My little boy had this identified at birth. The hyrdrocele made it impossible to tell if he had two testicles until he was 6 weeks. We were told to return about the hydrocele at 1 year but he is 10 months now & it's resolved itself. We were told though that even if it hadn't resolved itself that there would be no surgery until he was a few years old.

It is not possible (well it is, but only for a short time) to have an undescended testicle on same side as hydrocele. He has one or the other, has he been examined by a paediatric surgeon? Perhaps the u/s shows an undescended testicle on one side and a hydrocele on the other?

How old is ds? In general and for a one sided problem: Leave hydrocele until 3 (maybe 6 if seems to be resolving), can treat UDT at three (I used to leave a bit longer if unilateral, until child could understand about an operation and I could never condone early surgery because "he will not remember"), and assuming on opposite sides, can do both at same time somewhere in between.

Hope that helps.

Yes it didn't become apparent until he was around the age of 2 that one side was bigger than the other became more apparent over the hot summer

My DS had his scrotum looked at the day after he was born by a Neonatal surgeon as the midwives thought something wasn't right and he said that both testicles were in the scrotum but he had a hydrocele.

At the 6 week check the GP didn't really examine the scrotum/testicles she just commented on the hydrocele diagnosis, shone a light through his scrotum to make sure it penetrated through both sides and then told me to come back in 12-18 months if the hydrocele was still present.

As he grew his scrotum continued to look uneven/misshaped but I assumed it to be in keeping with a hydrocele but when things still hadn't changed when DS was 15 months I contacted the GP. I spoke to the GP over the phone who referred me for a scan and put in a referral to the paediatric surgeon.

The purpose of the scan was to assess the volume of fluid in the hydrocele but after a very long scan (by two different people scanning him) they told me there wasn't a hydrocele and in fact the reason the scrotum looked misshaped was because there was actually only one testicle and that despite vigorous scanning they couldn't locate the other one. I was shocked, overwhelmed and very upset. I just wasn't expecting to hear that news and it absolutely winded me and I was in tears. I don't understand how the mistake was made?

I then saw the paediatric surgeon about a month later who said he wanted to refer DS to another surgeon instead of him (because of the testicle being missing as opposed to just needing a simple orchidopexy) and I then had to wait another 6 weeks to see that one.

When I saw that surgeon he said that DS would be operated on as an urgent case but that he was hopeful he would find the testicle and be able to bring it down. Despite being assured the surgery would be done within 8 weeks it actually didn't happen for over 4 months and that was only because I chased and chased and chased them.

Following the surgery the Consultant did his ward round and said he'd located the testicle but it was too damaged, it hadn't developed and so it was removed. I was so upset, I couldn't believe it.

It keeps going around and around in my head, the confusion as to how this happened? I constantly question whether had they got the right diagnosis in the first place and treatment had been done when DS was much younger then could all this have been presented and his testicle need never have been removed

I feel constantly tormented.

Sounds like genuine mistakes.

Could you make an appt with the midwives - birth afterthoughts - and ask how they made this mistake? That might give you closure, though if he has one UDT then noticing it at birth wouldn't have changed the outcome.

In my head I can't get rid of the feeling that the reason the testicle was damaged and underdeveloped was because if how long it was sitting up in his abdominal area, and that if it had been diagnosed at birth correctly he would have been operated on much sooner and so the testicle could have been bought down and developed normally.

All I can focus on is the awful feeling that my son has lost one of his testicles because of a doctor's mistake.

My son had a UDT, found the day after birth at his check. Re checked at 6 weeks and about 1 (I think) when doctor said to come back in about 5 years. I looked up the NHS guidelines, which stated that children should have the operation ASAP to get the best result/least long term effects, and at lest by the age of 2. Went back and saw a different doctor and he had the operation just before he was two. It's still there (I have told him about operation and got him to keep checking himself whilst he is still young, because I don't want to have to talk about it when he's an awkward teen or an adult!). No long term effect, although he does seem to have small testicles.

Winter- cross posted. How old was your son when he had his surgery?

From everything I read on the Internet, there was no risk of loosing the testicle if not operated on early, only possible increase infertility the longer it wasn't operated on. It sounds more likely to me that there was something wrong with one of his testicles in the first place, which is why it didn't decend. Although I am not medically trained and guessing.

Could the surgeon talk to you about why this has happened and also your sons options for the future? (Is it possible to have a false testicle if he wants when he grows up?)

Both my son's testicles were ok but a hydrocele was picked up later and operated on

He had his surgery two days before his 2nd birthday.

He had his Outpatient appointment last week but the doctor doing the clinic wasn't the one who operated on him so couldn't really answer any of my questions. I've been made another appointment to specifically see the surgeon but it isn't for another 6 months.

I have had pretty much exactly the same experience of you, in every respect. My son is 3.5 and was operated on a couple of weeks ago (his missing testicle was picked up when he was 3.1 at a routine appointment to check his 'hydrocele'). They discovered during the op that his right testicle had just never developed. It was upsetting but even if they had noticed it at birth (and I assume the hydrocele prevented detection of the missing testicle at birth and at subsequent checks, which is fair enough) they couldn't have done anything about it. I understand how upsetting it is, but it's likely your DS's testicle was like that from birth - just one of those things.

I saw some children with awful conditions on the ward when my DS was in, and I ended up just being very grateful that he had something relatively minor. That's not to downplay your distress, I know it's upsetting, but it maybe won't do you or him any good to keep thinking 'what if.'

This is a link to the NHS page. it mentions that sometimes the testicle is damaged or withered if they are up in the abdomen:

www.nhs.uk/Conditions/undescendedtesticles/Pages/Treatment.aspx

But the op above said s/he wouldn't operate on an UDT before a boy was 3.

Ds also had a hydrocele from about 6-12 months - it went away by itself.

It doesn't help that in my job I have seen 100+ UDT repairs and about 95% of them have been in infants under the age of 1, in fact a very high number were probably under 6 months of age.

I just feel angry. Anger towards the doctor at birth who documented both testicles were in the scrotum, or angry at the GP who did the 6 week check for not examining him herself.

OK, may get flamed for this but my take. I think he has one remaining and functional testicle, it is not a case of male sperm one side and female the other so should function as normal, I have been engaged in conversations, once one is lost, about not riding a bike/contact sports etc but my advice always to do whatever he wants. In my experience the testicular tissue grows at puberty until it makes enough testosterone, he will end up with one big ball. His lunch pack will look normal, even in speedos.

In 90's we were told we had to bring them down or they would not develop. Sorry that was rubbish if they were not 100% they failed to descend, or just shrivelled in the inguinal canal. Having retired, it is my belief that orchidopexy is a cosmetic operation and has no impact on the ability of that testis to produce meaningful sperm, but does help self esteem and it can still make testosterone if it the only one. Removing an undescended testis may decrease risk testicular cancer but I would argue not.

I think you have had correct advice, even if badly communicated. If you are working on a unit where they operate before age 1 then things have changed a bit since I retired in 2011. Having done some of the research work in neonatal rats I know that picking up the vas, with Gillies or even "vascular" forceps, sterilised the rat on that side. I used to wait, at least until the puppy fat melted, say beginning of toddling, before surgery.

Ex Alder Hey (Tony Rickwood was a star), GOS, QEH, and my mentor was Helen Nobblett and I set up a unit elsewhere. I fell the hurt in your message Sat 16-Apr-16 21:23:49. I assume you are HCP, I will be returning to UK next week, pm if talking on phone would help you.

Dratsea gives excellent advice.

Ds had a hydrocele that nobody picked up on until he was 6.

dratsea - thank you for your reply.

I have worked with infants having orchidopexy at a young age since 2008.

I feel a bit reassured by your belief that if a testicle doesn't descend then there's a very high chance it would always have undeveloped or not functioned correctly even if it was bought down. It makes me feel that the outcome was always going to be the same whenever he had the surgery.

I'm seeing the surgeon in 6 months time so I'm going to have a good chat with him about where he found the testicle and why it was so "flimsy" - they were his words.

When DS came back to the ward after his operation the nurse wrongly told me that everything had gone fine, they'd found the testicle and bought it down and I was so, so happy. I can't explain the relief I felt, it was like an entire weight was off my shoulders, I was just so happy for DS. I text all my family to say the operation was over and he did have a second testicle and it had been saved, I was on Cloud 9. The Surgeon then appeared about 4 hours later and started talking about how the testicle had been removed and everything came crashing down. I couldn't make sense of it, for the whole afternoon I had believed that the testicle was back where it should be and then I was told it wasn't. I was so stunned and unable to digest what he was saying that I didn't ask him anything, I felt on the verge of tears. I did cry when he walked away.

I didn't say anything to the nurse about how wrong she had been and that she really should read the operation notes properly before giving hope to parents because I was too upset by it all. I told DH that I just wanted to go home and we left pretty sharpish.