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Pelvic Pain Support Network
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Unknown Medical Condition Feeling Hopeless

Hi I'm new to this forum and in need of advice . About 2 years ago I woke up with slight discomfort in my groin area . It was quite painful sitting like there was something wrong with my prostate . I went to my doctors and had a rectal exam and told it seemed normal ,was given Cipro for 2 weeks and told if it doesn't clear up to seek out my nearest GUM clinic. It never went away so off I went to the clinic . They checked me over and said its prostititus even though there was no infection present and prescribed 8 weeks of Cipro again . All STD checks came out negative. Things never recovered and to add to this I started getting a very cold penis and erection problems . It feels lifeless and rubbery and burns sometimes going for a pee. To cut a long story short 2 years later and numerous doctors and uros Its still the same with a sticky patch on the penis shaft and scrotum even after a shower it is right back to sticky again. This is a list of things I have tried .

Different antibiotics ,fungal creams / fluconazole , Std checks , 3 rectal exams , PSA test 2 times was 1.0 , Candida supplements / diet . tried lots of other things saw palmetto etc

The symptoms come and go and seem worse sitting especially leaning forward , I have also developed a red rash on my face on forehead and under eyes its like clusters of broken veins but not raised . Things I have researched ...

CPPS , Nerve damage / entrapment , Candida yeast overgrowth , lymes tick infection , some sort of std not showing up on tests .

I am not getting the help I need through the NHS and have actually been told its all in my head and I'm depressed etc which makes me angry to say the least . Trying to get tests done is like getting blood from a stone and I haven't the money to go private . I am waiting for an MRI scan but waiting time is 8+months . I am also waiting for pelvic pain specialist evaluation . I am going out of my mind with this and my relationship with my 7 year girlfriend is straining as I said its been 2 years and there seems to be lots of others online going through this . I feel let down with the medical industry and feel hopeless and suicidal . I have come here looking advice / help to point me towards some relief . thanks in advance

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I have no idea what you must be going through. However, some symptoms mimic PN and some do not. The pain when sitting seems like PN. It also affects my erections and my orgasms. I also have low T to deal with. I live in the USA and I have an appointment on October 2 and I'm praying may be the answer to my prayers. I understand how depressing this is as I do have PN and have been dealing with this for almost 10 years. Don't give up keep researching, you will find an answer. I did most of my research myself and got some good information from this site. I will let you know how my appointment goes. I'm having to pay for the this myself as my insurance, has yet again, denied my treatment. Hang in there.

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10 years just sounds bloody awful ttoney I feel for you and I hope you can get the answers you need on October 2 . I agree about some symptoms mimic the PN and some do not and that can play tricks on the mind , is it this is it that . I cant believe in this day and age with the advancements in technology / medicine that proper research hasn't went into this and nearly every specialist has no answer as I have read countless forums and there is only bro science to go on, Trial and error . I am on HRT and have been for 7 years and my blood tests have always been spot on considering hormones etc . I keep getting told practice mindfulness [ Which I think is way overrated ] I mean how can u keep a positive attitude when your penis is like an ice cube and all the other symptoms that come with it make life nearly impossible ! It is so frustrating.

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I, also, am on HRT and have been for years now. Starting out with a gel and now I take the shots. I know what you mean about the depression as I suffer from that also. I am just praying the information I receive next Monday will bring this 10 year journey to a close. I pray you find your answers that you are seeking. I will say, my penis feels numb sometimes. I believe from the nerve damage. Hopefully, I will know more next Monday.

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keep us posted ttoney as will I . fingers crossed you get some answers on Monday

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Thank you so much. I appreciate that. I will keep you posted.

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Certainly got some PN symptoms there by the sound of it; lifeless penis, burning urination, difficulty in sitting

I totally agree about the NHS, having been referred to a Consultant Psychiatrist - this "in your head" routine is sheer unadulterated quackery in my view; it's positively medieval, Was I relived to get shot of the mental health people!

And I absolutely agree about their reluctance to do tests, apart from taking your blood pressure of course, it's pathetic

This won't be any comfort to you but the only progress in terms of understanding and treating the condition I've made was via private medicine - I got a diagnosis - of Male Genital Dyaesthethesia - from a Consultant Dermatologist. After that other symptoms began to appear - constipation, burning/acid feeling anal sphincter, slight burning on urinating. So Im pretty sure it's PN or probably PNE

MGD

dermnetnz.org/topics/male-g...

If I was you I'd try to talk the GP into starting off on some nerve pain meds, as outlined in the link above. Some of the nerve meds were primarily designed as anti-depressants of course, and have a secondary effect on nerve pain(hopefully). That might be helpful with your darker thoughts. I've done a real number on those in recent months, but I'm no longer seriously contemplating it

I would avoid antibiotics like the plague, and steroid topical creams even more so

I also was looking at Candida/fungal/yeast overgrowth issues - I've had problems there in the past, and when my real problems started(burning scrotum) I was diagnosed with ringworm in the groin(which apparently I got rid of with micanozole). I convinced myself that this was the root of the problem. It wasn't though, another £330 went down the drain on a private consultation and stool test - the stool test showed no fungal infection at all. But at least that was eliminated. I'd asked the GP for that test - only to be confronted with blank looks and the statement that the NHS didn't test for that. I'd have had to wait weeks for the camera inspection of my back passage, had to pay for that as well. It's just total bs.

But anyway I'd narrowed it down to PN/PNE

At the moment I have just started on gabapentin - previously on the SSRI Sertraline;; I'm seeing a Pain Management Consultant on Wednesday, I'm hoping for the best combination of meds they can come up with to minimise the symptoms

I'll let you know what he comes up, which I very much hope will be worth the £200 I'm being forced to shell out

There are a lot of people on this site who have had long experience with nerve meds and hopefully they will be along to advise you

Best Wishes

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some of your symptoms sound like pudendal neuralgia. I would go to Dr. A. Lee Dellon website. Try nerve meds like amitryptllene, gabapentin. Consider pudendal nerve blocks . If not helpful, then get pudendal nerve decompression. Don't give up hope.

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Thanks

Yes, I've started on the nerve meds

I am considering the nerve block, and eventually decompression surgery, I'm not sure about having it done in Bristol, I understand Dellon has an excellent reputation(I downloaded a chapter of his book) but financially it's out of my reach. I'd need to win a lot of money. I have been touch with him actually, gave me a quote; but he did write that as the symptoms had come on in June this year it might resolve by itself, sometimes I think that's possible - other times not

How are you getting on after surgery?

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Im slowly improving. I think Ill know more in a month. Will keep you updated.

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Please do, I'll see what the Pain Management Consultant in Birmingham has to say tomorrow in my own case. He founded a neuropathic pain clinic here so hopefully it will be useful.

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It is medieval without doubt . My last doctors visit consisted of me sitting there nearly in tears explaining everything while this doctor sat looking out the window and smirking as if I was some lunatic then suggested I might just have to live with this ! and I should consult a mental health team . When I mentioned id like an appointment with a nero as I think its nerve related he said to me you may forget about that the waiting list is over 3 years ! I asked if there is anything he could give me like diazepam for to relax the muscles around that area for a bit of relief and to help calm the anxiety as I have heard that some doctors prescribe this and its effective for this condition I actually had the proof on paper I printed out from various prostate websites , he said not a chance you are getting that from me its addictive . I'm like wait till I tell you something addiction is the least of my worries here I am suffering very badly everyday with no relief . He then started accusing me of coming across like a drug addict ... Well that was the final straw I lost it completely and had to count to ten and leave the room before I ended up doing something I would regret like smashing the computer monitor over his head and I am not a violent person. Male Genital Dyaesthethesia I have read about also and the fungal infection as my stool is always mushy and it burns also when I pass wind . I agree on the antibiotics and steroid creams should be avoided as without bacterial or infection they have no purpose and actually can lead to more problems. £330 for a stool test is daylight robbery and so is most medical tests , for as little effort they have to do for that price is piracy , at least dick turpin wore a mask .. most working class people don't even make that in a weeks wage working backbreaking jobs. I am on nerve meds Amitriptyline and the side effects are horrible , I cant function on them I can barely get out of bed and complete brain fog. I'm due to see a pelvic pain physio and will report back here with any findings. I hope you get some advancement and answers from your appointment best of luck

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go get an assessment from a pelvic floor physiotherapist. And don't neglect the mental component of this condition either. The more depressed you are, the more difficult it is to heal - is a brutal cycle. Doctors do a horrible job of explaining what they mean by "its in your head". They should say "you have a hypersensitive nervous system, and you need to work to calm down your neural pathways that are detecting danger where there is none" . Diet, light exercise, meditation. 3 easy things to work on that will help reduce your symptoms. Also, consider getting some professional counselling to help you cope - this is a super traumatic condition and talking it out can help put things in perspective. I was right where you were a few months ago, and have seen considerable improvement with this approach.

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that is my next move I'm due to consult a pelvic floor physiotherapist just not sure when . I also agree with you that the anxiety and depression this causes makes things worse its very hard to stay positive . I'm always eating clean and in fantastic shape I am a men's physique competitor and train 5 days per week , no real heavy lifting or deadlifts more light weights higher reps though lately I find it hard for motivation with this condition . My brother is a community worker and has got me an appointment with a professional counselling team which I am due to visit next week hopefully they might be able to push things forward and help with coping . That is great that it has helped you in some way I hope I get the same improvement .

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things are getting worse I am close to going to hospital A and E . It is seriously getting unbearable stinging pain after urinating . My penis goes like an ice cube after urinating and burns really bad . I have been tested for urine infections and nothing showed up . Also I have noticed when I pass wind or stool it is like on fire as if there is high inflammation going on in my body . I cant take this much longer my face has also got worse with red blotches and flaky skin , its like inflammation is traveling around my entire body and ibrofen isn't working anymore . I am now housebound in bed feeling completely alone and helpless . I am going to have to change my GP surgery as the one I'm with has about 5 clueless doctors who try to diagnose you through a book from the top shelf probably dated back to the dinosaurs , seriously... talking to them is like trying to communicate to a wooden chair ! . The only thing I can think of doing is phoning an ambulance and getting on as if I have just been shot to get them to run tests I couldn't wait nearly a year on mri scans etc and I haven't a penny to my name to go private . whatever hidden virus / bacteria / fungus I have is slowly killing me I haven't slept or ate a bite in 3 days I look like death in the mirror . There is something seriously wrong here . I pray to god someone is going to help me . my whole pelvic area is numb I can hardly walk .

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