Hello, I am in a position where I feel like I am never going to recover and I can't go on in the pain I'm in... I don't know who can help me or what I need to do next, the pain is ruining my life. I've had 6 GP appointments, 2 A&E trips and a GUM appointment now and I haven't had a solid diagnosis of what the issue is. I am currently waiting for the GUM results and I have an ultrasound booked on the 9th of Jan but that feels like it's years away for me and I don't think I can't wait until then. Summary of pain; Started off as as put-up-with pain in my perineum but gradually got worse and worse - current symptoms; - A constant pain deep in the flesh where the crease is between the perineum and left leg - Pain in left groin and left leg specifically and only; inner thigh, back of knee (the 2 tendon things), ball of foot - Testicles are painful and sore, especially at the back of them (initially just the left but it's both now) and the pain causes me to feel nauseous some times. - Pain up left side of penis when erect - Pain in upper right groin about an inch up from base of penis and inch to the right. - It's causing me to limp - Sitting and standing are painful - Lying down is less painful but there is no comfortable position, just some positions are less uncomfortable that others Summary of what isn't an issue; - I am 28, I work in IT, I game in my spare time so no strenuous actions in my life - No back pain - No pain when passing water or stools - No blood from penis/anus - No discharge from penis - No prostate pain - 3x blood tests, all normal - 3x urine tests, all normal - Vitals checks all normal except for slightly elevated heart rate each time but this was pegged down to stress/pain - I don't smoke - I drink about 1/2 bottle of gin on a weekend, nothing during the week - I do not drink any alcohol when on antibiotics, no exceptions Summary of everything so far; #### Feb/March 2017 #### I'll mention this here as it's referred to later - I contracted epididymo-orchitis via sleeping with someone who had Chlamydia, however I was tested for all STD/STIs at the time and they all came back negative and I've been sexually inactive since then. Diagnosis & Treatments etc. so far; 1 - 30/10/2018 (GP #1) Checks; Vitals Urine Blood Examination of perineum area Diagnosis; Possible groin strain Treatment; High strength cocodamol (500mg/30mg) 2 - 20/11/2018 (GP #2) Checks; Examination of perineum, testicles, prostate Diagnosis; Possibly infection from 2017 not cleared up properly Treatment; 14 days of Ciprofloxacin every 12 hours 3 - 18/12/2018 (GP #3) Checks; Examination of perineum, testicles, groin Vitals Urine test Diagnosis; Unknown Treatment; More 500/30 cocodamol Referred for ultrasound #### Ultrasound ended up being booked for 26th of Jan #### 4 - 19/12/2018 (GAP #4) #### This is when right groin pain started. Due to feeling of hopelessness (6 week waiting time...), having already endured the pain for a while and this new pain I ended up having a breakdown at work and was sent home. #### Checks; Vitals Groin area Diagnosis; Unable to do anything until ultrasound Treatment; Told me to go A&E, gave me a letter 5 - 19/12/2018 (A&E #1) Checks; Examination of groin/testicles Blood Urine Vitals Diagnosis; Epididymitis Treatment; 7 days of Ciprofloxacin 14 days of Doxycycline Contacted GP telling them to change ultrasound from "routine" to "urgent" 6 - 20/12/2018 (GP #5) #### Went back because I didn't get any pain medication from A&E #### Checks; Vitals Diagnosis; N/A Treatment; Naproxen 500mg every 12 hours Changed ultrasound to urgent, advised not to get my hopes up Ultrasound moved from 26th Jan to 9th Jan Told me to come back if pain doesn't improve 7 - 24/12/2018 (GP #6) #### Pain didn't improve, been 3 full days #### Checks; Vitals Urine Diagnosis; Nothing he can do, need ultrasound Treatment; Gave me letter for A&E 8 - 25/12/2018 (A&E #2) #### Waited a day to see if it would improve, it didn't so went A&E #### Checks; Blood Urine Vitals Thorough examination of area by 2 doctors (normal and senior) Diagnosis; Doctor, senior doctor and consultant came to conclusion it could be chronic Chlamydia (from 2017...?) and that it's possible to get false negatives on those tests Treatment; Single dose of 1000mg Azithromycin albeit I had to collect it from a pharmacy the next day Senior doctor will contact GP again advising they need to push to get a quicker ultrasound Consultant said he contact GP to ask why I keep being sent to A&E there isn't much they can do and it's a waste of my time and also NHS time ############ 26/12/2018 - took Azithromycin and condition seemed to improve, pain was less severe albeit is this just a placebo effect or me hoping it would work? ############ 9 - 27/12/2018 (GUM #1) Checks; Full STD/STI check (blood/urine) - waiting for results Through examination of groin/perineum area; she has been the only person to actually locate exactly where the pain is via touch, even I haven't been able to. Prostate examination Diagnosis; Highly doubtful it's chronic Chlamydia as I tested negative for it before and it's pretty accurate. Nerves run down legs from back, could be pressure there as it's possible to have problems with no back pain albeit an MRI would be needed to check this. Treatment; No further medication due to already being on Ciprofloxacin, Doxycycline and Azithromycin. Await results from tests. Suggests I may need to see a urologist or a something-else (forget what she said now) ################# Current situation ################# I would say the worst pain I've been in was when I had epididymo-orchitis - I think a close second was crashing into a tree at about 30mph when I was younger which caused me to be unable to walk for 2 weeks. Once I started taking antibiotics for the epididymo-orchitis the pain went from a 10/10 to a 4/10 in a matter of a few days. In my current situation it started as a 2/10 progressed to about 8/10 on xmas day. It dropped to about a 6/10 after the Azithromycin and has remained there until tonight when it's gone up to about a 6.5 - I went to the pub to watch some friends perform and I had to stand/sit in uncomfortable chairs for a few hours and it made it worse until I just had to leave. #################### Sorry for the essay, I tried to keep it concise - if anyone does take the time to read it and has any insight or advice I would be forever grateful.
INSIST on a SCROTAL NERVE BLOCK injection into the offending scrotal region. It is safe and easy and may save your life. Next confirm that you have varicoceles via a scrotal ultrasound and if so then get a varicocele embolization. Your symptoms are consistent with a high grade varicocele. If all this fails you may need to get the testicle removed which is not a s bad as it seems as you can still do well on a single one with regards to testosterone and children and for appearance they put in a fake one. Also try the forum here on "Testicular Pain" where there is more information for you. Good luck. I am in the same boat as you.
Here are a few tips for pain management that help me: 1. Avoid all sexual activity , even getting erections as that always initiates a flare-up 2. When the pain starts to get severe lie down and put an ice pack under you scrotum and another one on top and try to freeze the area 3. I take anti-inflammatories like Toradol (prescription drug) and ibuprofen plus codein. I find that antibiotics do not help as the pain is not caused from an infection but rather inflammation. 4. Wear tight fitting briefs so the testicles do not get banged around which seems to trigger flare-ups and pain. I also wear tight briefs at night for the same reason. 5. You should find a good urologist who specializes in scrotal pain. If the scrotal nerve block helps you the next step is to fix the problem which I believe is likely caused by a varicocele. There are 2 ways to fix it: one is with a urologist who can perform a varicocelectomy where he just snips the vein and ties it off - no big deal. The other approach is through an Interventional Radiologist who would insert coils to kill the offending vein. Some men have had problems with the coils later on.
I am due for a scrotal nerve block injection in 2 weeks. If that works ok i will then get a varicocelectomy. Good luck. Howard
Another thought: Prostatitis is very difficult to diagnose with just a urine sample, let alone treat. There is a new DNA test that analyses the prostatic fluid that is produced when the urologist does an aggressive prostate massage for a minute. This test is excellent because it not only IDs the disease but also tells you which bacteria are causing the problem so a proper antibiotic can then be injected into your prostate (via the rectum which is painless) to kill the disease. You might ask for this test. I will send you the name in private message. Also, one way to distinguish between varicoceles and other causes of your pain is to ask yourself if the pain is reduced when you lie down? Especially in the morning when you awake before you stand up is the pain less? If so this positively identifies varicoceles as the culprit of your pain.
Sorry - I meant to say to try the "Prostate Problems" forum here.
Thanks for the response Howard.
The pain has gone down to a manageable level now but I'm still not right, ultrasound is booked in for Wednesday.
I really just want a diagnosis now.
I also feel the pain resolved itself on its own, I don't think the antibiotics or pain medication helped as when I was taking them it made no difference - this obviously is worrying, since I'm scared it could flare up at any time and write off another 3 weeks of my life.
Didn't realise all comments were from yourself; do you have pains in your groin and one leg, as well as your testicles?
This explains so much; what was baffling my GP was when I wake up the pain is basically non-existent but by the time I've got ready for the day (like 30-45 minutes of standing) it starts coming back and by late morning (just sitting at my desk) it's fully back. Also, I've been to the pub twice and both times I had to leave after a couple of hours cause the pain was unbearable and most of my time was spent standing and when I did get to sit, it did nothing to help me and I ended up having to go home and lie down.
I dismissed varioceles initially as it mentions lumps on the testicles but I couldn't find any however when I feel my scrotum it does feel like there's a load of worms in there and varioceles are apparently pretty common but usually don't cause problems.
I am hoping it is varioceles so I at least have a path forward, it's the not knowing that is the worst.
Thanks again.
You describe a classic varicocele!! It is exactly the same for me too. Varicoceles can destroy your life or they can be benign, it is all a question of their degree. That is why you need to get a scrotal ultrasound. Trust me - I know this subject all too well. I would recommend a varicocelectomy by a urologist rather than an embolization by an IR unless the IR has experience doing it without any coils. But we can cross that bridge when we get to it.
can i ask why you say to slug check prostate forums please
... and! so what happened to the OP?
Its been some weeks now and the OP hasn't returned, how did his first ultra sound scan go, did they find anything that could be causing the pain?
I'm in the same boat, chronic pain in right testicle, right leg and foot. The pain is destroying my life, I cant sit down, I cant stand, I cant wear clothing as all this makes the pain horrendous.
I've had 5 ultrasound scans over 12+ years and all they find is some small cysts and vavaricoceles. Urologists say they are too small to be causing the pain, they need to be 2mm or larger for them to operate on.
When I lay down the pain completely goes, but once I get up and stand or put clothing on the pain soon starts within minutes.
Sorry for the lack of response.
Testicular pain eventually reduced itself, they feel a bit tender like if I catch them or whatever but I wouldn't say they are painful.
Perineum/Groin/leg pain is still present but I'm on Gabapentin now and that's helping although it took a couple of weeks for it to kick in - rather than the pain no longer being there it's more like I've forgotten about it, like it's still there but at the back of my mind instead of constantly affecting me.
Ultrasound showed a "slight" variocele in the left teste which was apparently "nothing to be worried about" and it couldn't find anything abnormal in the perineum area.
I had an MRI 2 hours ago and the follow up appointment is 18/03/2019 . I also have a felixble xoscopy (not colonoscopy) the x substitiues the first bit as I can't remember what it was called, it began with an 'S' and it's done whilst you're awake without any anaesthesia - the surgeon suggested he'll be looking for any growths that could be pressing on nerves or whatever.
Cheers, Slug
To add; A&E suggested I got a GUM appointment as I had chronic chlamydia? I found this impossible as I had recently tested negative but he suggested it's possible for it to return, upon getting there the lady advised she's been at it for 20 years and said it's very unlikely.
Transpired there was no live or dead chlamydia bacteria or any STD/I present.
She did suggest nerve issues, specifically with "S2", I looked at a nerve map on the net and this nerve seem to be present in all of the areas I have problems, so I'm hoping the MRI will help there.
I am wondering if I the issues I have are unrelated; i.e. it was just unfortunate I had epididymitis at the same time as the other issue.
Hopefully the MRI/Butt camera will help diagnose the issue.
Hi again We5t - when you say the pain stops when you lie down you are describing a classic varicocele problem. Even though they may be small they can still cause severe pain. I would suggest you see an Interventional Radiologist and discuss it. They have very simple procedures for sealing varicoceles that do not require the surgery that urologists do. Might be worth to get a second opinion from an IR.
Thanks Howard, I will mention this at my Urologist appointment next week, urology have never wanted to go down the surgical rout anyway.
They have always said they cannot see what is causing the pain, cant fix the problem is they cannot see one etc etc. I did suggest to them just because the varicoceles and cysts are less than 2mm is size, that doesn't necessarily mean they are not causing the pain.
Have you had your varicoceles removed?
Funny you should ask - I did undergo a varicocele procedure about 16 months ago with an Interventional Radiologist to destroy my varicoceles. I went with an IR rather than a urologist because the uros do a major surgery to cut the veins whereas the IRs do a very benign procedure while you are awake. Normally they use coils and sclerosant to kill the veins but I did not want coils as I had heard that they can attach to the nerves and cause problems later on. My IR had never done the varicocele embolization (VE) before without coils and told me there was risk of the chemical sclerosant getting into my scrotum and causing pain. Well ... the right side VE went nicely but the left side is now the cause of my severe scrotal pain (much worse than before the procedure ) because some sclerosant got past the pressure points and into my left testicle. So if you do visit an IR which I highly recommend over a urologist for this problem try to find one that had experience without using coils to do the VE.
By the way, I was prescribed Gabapentin too but could not take it as it caused severe drowsiness and mental sluggishness. Problem is it has to be taken all the time whereas Oxcodone is just taken as needed and really helps me with no side effects. But of course it is not a permanent solution as it is addictive.
Sorry to hear that you are now in worst pain.
Were you offered a Varicocelectomy by a urologist?
I would have thought removing the varicolceles would be a much better idea, what are the side effects from a Varicocelectomy apart from it not working, or making the pain worst.
It seems both procedures carry the same risks.
Yes - I was offered a varicocelectomy by my urologist but the problem is that they often are not effective because collaterals and other bypass veins open up to compensate for the loss of the main gonadal veins. The urologists have no way to deal with these but the IRs can see them open real-time on the venogram and go after them and seal them so the varicoceles do not recur ..at least that is the theory.
Hello Slug, Not heard from you for sometime now, what happened about your testicle pain problem, are you still in the same pain? It would be nice for you to come back and update us...
hi Slug - hope things are sorted for you and youre on the road to a full recovery.
my son has pretty much the same history as you but they decided it was testicular torsion detorsion due to his medical history (many visits to the GP and A&E over a 3 year period.
having decided this they performed a double Orchidopexy on him (v unplesant op) but hes still in agonising pain. we are 10 weeks post op and its horrendous to see him in constant and severe pain. most recent scan suggested inflammation at the back of the testicles (epi something) he was put on amoxi clav whcich seemed to work initially but he was back in pain 2 days after the course ended - the GP put him on a repeat course but the 2nd lot made no difference.
hes only 11 years old.