Tender testicles

[Anthony0912]

This is probably a tender subject in itself but Does anyone else suffer from very tender and painful testickes? It's not an acute thing to be worried about such as potentially cancer related.

I've always had it, just wondered if it's vascular related as it feels more the tubes and not so much the actual testicles themselves, I totally forgot to mention it at the centre of excellence in December.

There was loads I forgot to mention like my fluctuating hearing, regular hearing loss in one ear , tinnitus like defects. The blinding headaches and tender left side of my head during these episodes.

Back to subject at hand....

Literally that bad as I'm on morphine and tramadol yet I can still feel how bruised and tender my testicles are.

[kevinmitchell]

It may be related to the epididymis (collecting duct at the end of the testicles at the end of the tubes) see books.google.co.uk/books?id...

Best to check it checked but I appreciate the pain as I've had similar symptoms on/off over my 30 year journey with BD but as we all know with Behcets there are so many variations to the problems, symptoms and treatments.

[RonSton7]

I've had similar symptoms when I initially got diagnosed with BD. My doctor picked up that my testosterone levels were very low, almost off the bottom end of the scale.

Whether the low test was a coincidence to the pain I don't know but strong painkillers are associated with low test levels. And low test for us men can cause issues with low mood, fatigue etc.

I'm on testogel daily now, no pain down there and it without doubt it helps with my mood, energy levels and overall resistance even if it doesn't really help my BD symptoms.

Definitely get yourself checked at the docs and ask for a blood tests for your hormones including testosterone, it might help throw some light on your symptoms mate.

[TCSM]

I've had epididimytis and orchitis a lot over 20+ years....often with testicle swelling up considerably. Had lots of scans and tests etc. to rule out more serious things, but always negative (thankfully). I'm 100% convinced it is part of my BD. It usually starts with tender epididymus. On more than one occasion when I detect that it is starting I take max dose ibuprofen 4 times a day for a week and it stops it getting too bad. But I suppose it has got easier for me to manage over time. I hope it does for you too.

[AndyBar]

Sounds like chronic Epididymitis. An ultrasound can probably help as a first measure. I've only had the acute onset form of this and no amount of pain medicine could help. It is common with Behcet's. A urologist with autoimmune experience should be able to help.

[Anthony0912]

Can I just thank you all for your kind responses, believe it or not I haven't googled anything as it just gets the mind worrying. I will ask my gp to see what can be done, hopefully I can get some respite soon. As I have so many facets to my illnesses it's hard to know where one overlaps the other. In my position I'm conscious of not wanting to sound needy regarding every ache and pain. As we know, with Behçet's the doctors know less than us! I have been educating my GP, she has to be fair, told me she's been reading up about my illness, considering I'm her only patient with BD I was impressed. As head GP nothing is too much trouble, she said all doctors have heard of BD but your chances of actually coming across a patient in your care is slim.

I thought after i posted - I hope I haven't been too upfront and offended the ladies talking about my bits , but they are just a part of the human body and I def did not get a kick out of talking about it!! As I feel like I've been kicked!

Thank you guys 👍🏻

[Barry71]

I have suffered epididymitis / orchitis since the age of 17 until present day (now 45). I also have had a spotty scalp since about that age too, and tonsils that either get sore or fill with white stuff. The ache / tendernesss varies, when I was younger it used to cause pain behind my belly button, and an ache down my thigh. Up until a couple of years ago it was always my right testicle, now this has switched sides. A course of antibiotics (sometimes 2) usually cleared it, which also cleared the scalp and tonsils, but these always returned shortly after.

When I was diagnosed with BD last year and was put on 60mg of pred my balls had never felt more loose and comfortable, like they used to feel when I was about 16! I notice that during achy episodes, the sac feels a lot tighter.

I have over the years noticed some triggers, one being very spicy food, I love curry but if I ever got one that was far too spicy, it would trigger an episode.

A couple of years ago I went gluten free due to my partner being gluten free and it being easier to eat the same, and I did not have any more issues with the right testicle, but last year started with the other side. Going gluten free practically got rid of acid reflux, and stomach discomfort when going to the loo, and the frequency of going. It also alerted me to other foods and drinks that caused issues, one being tea - it seems to irritate my bladder, leading to a constant needing a wee every ten minutes, and getting up in the night. Lettuce also causes the stomach discomfort - I sussed this as I used to get this only when eating away from home, and the only time I would eat lettuce.

[Dan_NY]

My testicles hurt every day for about a year and a half during my last flare. The pain was very sharp and now and again it would shoot. Not excrutiating but very painful. I saw two urologists and had several scans. One scan showed an almost unnoticeable amount of swelling. Doctors never did figure it out. One doc put me on doxycycline. Didn't help in the slightest. When I was diagnosed with Behcets, Dr Yazici told me this was one of the known symptoms. In my case, it was swelling due to Behcets and its very possible this is what is happening with all of you.

I wish I had a magic cure but mine finally faded. I would think that if your Behcets is under control, the swelling should go down and this should fade.

I feel for all of you guys who share this. How can you tell your boss or co workers.... MY BALLS ARE KILLING ME LEAVE ME ALONE!!! I felt this way so very often. Also with the headaches though I didn't have the energy to want to say that.

I wouldn't worry about offending the ladies. Female Behcets sufferers have their own lady-part issues/questions and some have posted on here fairly detailed discussions.

[Anthony0912]

Exactly my sentiment Dan regarding people not understanding your hurting everywhere. I have got to understand that basically anywhere we have blood vessels we can have pain. Which basically is everywhere. The balls pain is just like you've been kicked and it's aching. This is me remembering from childhood here!

I haven't been able to wear ordinary underwear either as it's too painful.

Unfortunate I had a head injury in 2014 which has left me with other problems, so with Behçet's , chronic fatigue and fibro I just want to crawl into a hole most days. But we have to keep plodding on.

Nice to know I'm not alone!

[Dan_NY]

That first scan of my nuts was horrible. The woman was determined to do a good job and find what was wrong. Over and over my boys she went with the scan tool thinggy looking and looking and PRESSING HARD. I squealed like a little school girl when she ran that thing over certain parts. Makes me cringe just thinking about it. I don't want to go through that again. Sad to hear of your head injury. Have you had a scan since diagnosis? I had brain swelling but not Neuro Behcets. Also bright spots on the scan which apparently is only found in old people or should only be found in old people anyway . I am just about ready to go back for another scan as my headache has returned but remains tolerable for now. I am on the fence.

Good luck to all you guys. I truly hope things subside for all..

[Anthony0912 in reply to Dan_NY]

What makes me wonder is, I was classed as post traumatic migraine sufferer due to head injury the neuro ordered MRI after I had a collapse and insisted something had happened after their dept ordered me off all drugs for migraines as they said I was causing rebound headache by taking too many analgesics.

When they MRI you - the radiologist class any white spots (lesions) as migraine scars - if they know you suffer from migraines.

But interesting as my behcets diagnosis was through my own hard work - I emailed the centre of excellence with pictures and they said ask your gp to refer.

So in effect if my neurologist was to ask radiology to re-read the MRI with BD in mind would they come to another conclusion?.

The only reason I had the latest MRI was because I hit a wall with the hospital I was getting nowhere fast , and asked for copies of my MRI from the year before when I had the accident.

I sent them to a neuroradiology professor who works at UCLH in London , he was concerned at my symptoms and said my GP needed to send me back to neuro urgently as I had glove stocking distribution of pins and needles which is neurological problem.

I was wondering whether to ask for the latest MRI on disc and ask the professor to view it in relation to Behçet's disease as the diagnosis.

It only cost me £80 and the report was brilliant evidence to send to the CE of the hospital as a complaint which got me seen again urgently, they did all their tests and said it was chronic fatigue and fibromyalgia.

I'd told them about my ulcers and he said "yeh your stressed", I protested that I'd had them since I was young as far as I could remember.

The nerve conduction test seemed to prove that as it was normal - I should now stop having pins and needles! Like my GP said the test covers long fibres is it? And there's thousands of short fibres which they can't test , so it's perfectly feasible to be suffering it's just they can't see it.

Something occurred that December evening into the detox they ordered I'd been on naproxen at 1000mg per day plus cocodamol 30/500 x 8 per day then to zero.

I collapsed in the bathroom , passed out came around to find I'd wet myself ,was sweating and shaking and had a sharp pain in my left side of my head, the right side of my body was numb with pins and needles -and has been ever since.

My GP said it was irresponsible of the neurologist to have ceased all meds after being on anti inflammatory drugs for 18 months - as we know behcets is an inflammatory illness so goodness knows what happened to me.

I agree with the diagnosis of chronic fatigue as I'd always had these episodes of drained feeling and the one time I collapsed hitting a doorpost at work and knocked myself out for 4 1/2 hours. I suffered blinding migraines ever since and also horrendous photophobia even if it's not sunny and also artificial lights too.

So as you can imagine I'm a real wreck, I have more questions than answers really.