7 years - No Answers - Terrible Doctors
Posted , 4 users are following.
Hey guys. This is going to be long post but after reading hundreds of messages from people having similar complaints i have decided to create my own thread explaining my story.
So once upon a time almost 8 years ago i was NOT sexually active for months and had NO health problems. Then one day i met this girl who i later discovered had a bf and was quiet promiscuous. I thought to myself "well, at least we didn't have sex and it was only oral sex she performed on me"
Around 3 weeks later i get a rash on my penis (this rash affected the head of the penis and the foreskin covering the head) In other words it was only visible if the foreskin was pulled back. There was no other symptoms, no pain, itch etc I was told i had Thrush but i wasn't given any cream or anything so i presumed it was nothing to worry about and would go away in its own time. It did indeed eventually go away but it did not stay away for long and would pretty much come and go and a weekly basis or certainly every 2 weeks anyway.
Over the past 7 years this has continued. I also have an extremely itchy anus that likewise, comes and goes. I also have issues with my eyes being dry and itchy and drive me insane and again, these symptoms come and go. At one point i developed a rash all over my chest and was told it was some condition that was a reaction to a viral infection and would go away and not return - but it did return. On both occasions it lasted for 4-5 months before slowly fading away. Shortly after this i had trouble with my knees/joints and one day dislocated my knee far too easily. While sitting in the hospital have a leg brace fitted i noticed the leg i dislocated had a patchy rash on it. Oh did i also mention i developed a rash on my armpits which they said was psoriasis yet it cleared up after months and never returned.
I have been to countless doctors and am disgusted at the negligence received by them. In 7 years they have diagnosed each rash as being completely seperate issues. They have been so unhelpful. I have obviously been tested for stds multiple times and all results were always negative. These doctors seem to think that thats as much as they can check for. Iam continously told "you do not have any sexually transmitted infections and whatever it is, isnt anything serious so try not to worry and get on with your life"
I have referenced the fact that i was not tested for herpes or HPV and was told "There is no tests for Herpes or HPV" but that my symptoms do not match Herpes or HPV so they were both extremely unlikely , even more so given that my encounter was only oral. They say i 100% do not have a sexually transmitted infection and they have even claimed that "whatever it is , is not contagious" How on earth do they know if they cant identify it?
In recent months my symptoms especially the penis symptoms have worsened. I seemed to pick up a viral infection and its almost as if it triggered my condition to be worse. Since then each time the rash appears it is now accompanied by a tingly itchy sensation which always comes from the exact same location (the back of the head of the penis) and a foul strong smell thats disgusting. Also on one occassion there was discharge and extreme swelling and it was very sore and i was admitted to hospital.
In the hospital i was told that i should not have been referred to emergency because my condition wasn't an emergency and that all they could do for me was a swab to check for bacteria/fungus. I was happy with that if iam honest because it was more then anyone else was doing for me. Anyway my results came back that everything was normal. They did say i was positive for strep bacteria but they said it lives on the skin and that it was normal for that to show up and that it wasnt the problem. I was given NO treatment and sent on my way.
Iam at a loss at this stage. Desperate for help and my quality of life is suffering so much that suicide has crossed my mind at times.
I don't expect anyone here to know / diagnose me but i thought i would share my story and if somehow there is anybody out there that can help or at least put me in touch with someone competent that can do some actual tests i would be so grateful.
Iam based in Ireland for anyone wondering.
Thanks for reading
0 likes, 12 replies
mike81573 harry70450
Posted
do you have ulcers on your mouth that comes and go every while?
harry70450 mike81573
Posted
yes, i get mouth ulcers alot . Although ive always got them since i was a teenager . No doctor has ever suggested a connection though?
harry70450
Posted
Just to add. Around the time this all began i also had a problem with my pubic hair where it seemed as though the strands of hair grew weak and just broke leaving split ends. This was thought to be caused by a fungus.
There are also some areas where i would get intense itchying and everytime i had a "flare up" the itchying always returned in the same location. Exact same area around my anus. Exact same area in my pubic region. But whenever these areas were inspected i was told i had a hemeroid and that nothing out of place could be seen in the pubic region.
Over the past 2 years i have started having really bad itching with my eyes . Like intense itching that drives me insane. I believe this is connected and the symptoms are pretty much the same to the extent that they are really itchy and come and go every 2/3 weeks maybe. But again they suggest there is no connection and keep throwing antihistamines at me.
The penis thing causes me great anxiety and has destroyed my sex life and even my mental health to some extent but my eyes are what drive me crazy physically as its just torture when they flare up.
I genuienly feel like no doctor i have seen to date understands what i go through and they all just seem to think "well, its nothing serious so dont worry"
Iam desperate for help and iam more then ready to accept whatever it is. I just want some form of help so i can at least treat this condition (assuming it cant be cured)
I have pictures also if its worthwhile uploading some?
harry70450
Edited
Unfortunately most pics i try to upload wont upload. This seems to be the only one the site lets me upload
mike81573 harry70450
Edited
I think you have one of these 4 diseases, Lichen planus, lichen sclerosus, bahcet disease or steven jhonson. I advise you to read the symptoms of each disease and compare them to yours in order to see what is the most likely you have. Don't worry and be depressed you are not alone in this we all have problems, you need to accept what ever you have and to live with it. what i know is you can do bahcet disease test which is HLAB 51 it will help in diagnose. I suspected this disease because you said you have a problem with your eyes and constant ulcers on mouth thats why. PLEASE note that i am not doctor but i am talking based on my experience and research and doctors opinion would be better. i hope you find solution and feel free to ask anything.
mike81573 harry70450
Posted
I think you have one of these 4 diseases, Lichen planus, lichen sclerosus, bahcet disease or steven jhonson. I advise you to read the symptoms of each disease to yours and to see what is the most likely you have. Don't worry and be depressed you are not alone in this we all have problems, you need to accept what ever you have and to live with it. what i know is you can do bahcet disease test which is HLAB 51 it will help in diagnose. I suspected this disease because you said you have a problem with your eyes thats why. PLEASE note that i am not doctor but i am talking based on my experience and research. i hope you find solution and feel free to ask anything.
harry70450 mike81573
Posted
Bechets disease is certainly interesting as i never heard of that before. I dont think my rash is consistent with what iam seeing or reading about the other 3 you mentioned however.
Out of couriousity. Is there any doctors that ever reply or frequent these forums?
I would love to be put in touch with someone that can perhaps help me at least get some tests done
mike81573 harry70450
Posted
rash is a symptom of lichen planus or lichen sclerosus
maxpower2020 harry70450
Posted
I doubt there would be many doctors here giving free advice when there are some experts in this field charging 1000's of $$$ for consultations.
Having said that, sometimes people less qualified might actually give you a better opinion. For example, a nurse working in male STD clinic and has seen many of these cases may be more qualified to assess your condition than an average doctor who read about the disease in a book 15 years ago. Same with some posters on this forum who have seen many cases and make better assessments then general physicians.
As for your issue, it looks like genital psoriasis in my opinion but could also be a number of other dermatological conditions. And this rash has been on going for 7 years? Or disappears from time to time and appears during flare ups? Have you tried any corticosteriod creams? These would usually have some effect no matter what the derm condition is.
harry70450 maxpower2020
Posted
For over 7 years this rash has come and went on almost a weekly basis. It seems to be very sudden, almost out of nowhere i might notice a small red patch and in the space of just a few hours it could cover the whole penis head.
From beginning to end (meaning completely cleared up) is usually 2 - 3 days unless i get it really bad which for some reason over the past few months i have been and it can take up to a week to clear up but it always returns again within a week or two.
When this rash appeared on my armpits, i was in fact told it looked like psoriasis but whenever the rash was visible on the penis, or any other body part, psoriasis was never mentioned or considered. Also, the rash on my armpits didnt come and go. It stayed for months (maybe 9 months) then gradually faded and never came back. I also had a rash on my chest which presented the same way but this was diagnosed as roscea. It again lasted for months and slowly faded. This rash did return a second time (i was told it wouldnt) however it again faded away a second time and never came back. So i have been free of this problem on my armpits / chest for almost 2 years.
Shortly afterwards is when i started getting it on my legs (i had been complaining of knee pain for some time and noticed the rash after one day after i dislocated my knee) In terms of appearance the rash was patchy and spread out on both my legs / chest but its appearance on my armpits was just one big blotch. It was also sore and looked more aggressive on my armpits where as there was no itching or soreness or any discomfort on my chest etc
Its only on my penis that it comes and goes regularly and it used to be just a rash and maybe a tingly sensation the odd time but in recent times its intensified a bit and that tingling sensation is more prevalent. It may even feel like a burning sensation sometimes (this can sometimes be felt after ejaculation also but not always) Theres also discharge alot more lately then ever before and it smells SOOOO bad.
Another strange and embarassing symptom that perhaps is worth mentioning is that since this all began i have been convinced that i fart soo much.
Interestingly one doctor once prescribed me antibiotics (not entirely sure what exactly they were for if iam honest) but they seemed to work. I felt amazing. Its hard to put into words but when i took them i noticed that i was pooping ALOT for about a week and it felt as though my body was ridding itself of toxins (best way i can describe it) I felt less fatigue, less brain fog and i also stopped farting so much lol I just felt really good in myself and interestingly the intense itchy anus i would experience every night went away and the skin around the anus just felt healthier and better but the rash on my penis didnt quiet go away so i contacted my doctor and he decided to prescribe a second course of these antibiotics as we were hopeful they were certainly doing something . The penis rash went away (although i guess it was going to eventually subside anyway) but the interesting thing this time was that it stayed away. I remember about 3 weeks went by and i was feeling hopeful my problem was irradicated but on the 4th or 5th week it returned and i was back to square one.
I was pretty much told i was a "medical mystery" at this point and that there wasnt much else they could do for me.
mike81573 harry70450
Posted
No the most of us here are not doctors but as i said for bahcet disease test you can do HLAB-51 test. The best thing is to consult a good dermatologist before you do it because it is expensive and bahcet disease is not always diagnosed by tests, it is diagnosed by symptoms also.
glikkon33 harry70450
Posted
Hey man, don't hurt yourself. After some serious digging around and going as far as into medical journals, I know exactly what you have. In fact I have it too, but not in chronic form yet.
This site highlights the text 'reactive arthritis' after I post this reply. Go ahead and read about it.
Here are some highlights from it:
-Joint pain - knees, etc
-Inflammation of the urethra (urethritis). Urethritis can cause a discharge which you may see coming from the penis in men. You may also have pain when you pass urine.
-Inflammation and redness at the end of the penis (circinate balanitis) sometimes occurs. However, it is not usually painful or serious.
-When you have an infection your immune system tries to fight it off. This usually works well and that's why we recover from infections. But sometimes your immune system goes into overdrive and accidentally tries to fight your own body.
-clearing the triggering infection does not usually alter the course of the arthritis. Once the arthritis is triggered, it will usually run its course well after any infection has gone. However, some studies suggest that long-term treatment with antibiotics may help to reduce the length of the arthritis in some cases, particularly if chlamydia is the triggering infection. The use of long-term treatment with antibiotics in reactive arthritis is currently being investigated.
a couple more:
-In most cases the symptoms last 3-6 months and then go completely without leaving any long-term problem. After the swelling and inflammation (arthritis) have gone, it is quite common to have niggly pains which continue for several further months.
-In about 1 in 6 cases the arthritis lasts longer than twelve months. It can sometimes last for years. This is your case.
As far as I know, I've entirely solved this diagnosis with extensive research on the web - no help from doctors or urologists of course. Looked up 'circinate balanitis' images on Google and it shows red ring-like patches at the base of the glans on the foreskin. It matched my symptom which had gone away by now.
As I mentioned earlier, I looked up a research paper on this and the combination of antibiotics is either rifampin and azithromycin or doxycycline and rifampin - both have been successful on the study group of 42 individuals. You have to be on them for 6 months.
Drug: Azithromycin and Rifampin
Azithromycin 500mg daily for 5 days and then twice weekly; Rifampin 300mg daily (both for 6 months)
Other Name: Zithromax and Rifadin
or this combination:
Drug: Doxycycline and Rifampin
doxycycline 100mg daily; rifampin 300mg daily (both for 6 months)
Other Name: Atridox and Rifadin
Forget about urologists and other doctors, the vast majority are not qualified. If you want to get a test for this condition, see a rheumatologist. They will draw synovial fluid from your knee to know that you have it and will also check if you're HLA-B27-positive, which sounds like you are. And will also prescribe a long-term treatment with antibiotics. Taken either of the antibiotics and not the combination, as well as using it for less than 6 months won't get you rid of this issue. Only the combo treatment works as what had been observed in the clinical trials.
7 years of pain can drive anyone mad, so I hope this information will get your life back. Of course, keep us posted on your progress.