Let me start by saying I was treated for external HPV. Two of my exes are HPV positive. One had a hysterctomy and the other required surgery. I have been going to a certain unamed federal hospital (in LA) for former federal employees. Some of you know who I'm talking about.

I have HPV bumps in my mouth. The lining in my mouth has been swollen since summer. I have numbess on the left side of my tongue (where the bumps are). I have pain and swelling at the base of my tongue and in my throat. My tonsils had started swelling about last Feburary. They where taken out about 2 months ago, this gave me temporary relief, but now I am way worse. I have been losing weight and have been suffering from fatigue.

My ENT Dr.'s, many of which are interns under 30, scoff at the idea I could have such a rare cancer. I have been complaining for about 9 months. I am at the point where my throat is alomost swollen shut and they keep giving me anti-biotics. I literally have enough anibiotics to last until Januray. I need to find a DR. that takes an HPV infected person seriously. Most of my doctors don't even know how to test for oral HPV.

Advice anyone. One of my primary care doctors said I should go to the patients' advocate, antoher said that I should get a second opinion outside of our system ASAP.I see myself going to an er in the next 48 hours at most. The problem with that is this Federal hospital is my only source of healthcare. I need to do something fast.

Yes you need to do something fast. I would go outside of the system and find an ENT that knows about oral cancer. I wish I could help, but there are others on here who may have better answers for you. Good luck!

Well I bet that given how things have been handled so far, that when the tonsils were taken out, there was no biopsy done on the removed tissue to confirm what the issue/pathology really is. (Cancer can only be positively diagnosed through a histopathology microscope exam of the cells themselves).

I am confused by your comment that you have HPV bumps in your mouth. How do you know they are HPV related or what they are specifically? Has someone biopsied them? HPV does not produce lesions for the most part that can be seen, so HPV bumps likely means something else. Other than a biopsy there is no oral test for HPV. So of course your doctors do not know how to test for oral HPV - unless someone cuts a small biopsy and take that tissue sample, and does a PCR test on it for HPV, but I would want a confirmation of cancer first... what caused it is a secondary issue.

Since you are in LA, I would go to the dental school at UCLA where there is a world class oral medicine specialist. She can biopsy the tissue and you will finally get a black and white answer to what this is. There is also one at the USC School of Dentistry. If you go to UCLA they also have a world class head and neck cancer department with doctors from every specialty to determine what should be done if this is the big C. But you have to get a finite diagnosis before anything else can happen.

This can also be done a VA hospitals, and if money is a huge factor, you can ask the doctors there to biopsy the tissue. For a head and neck surgeon/ENT this is not a big deal to do a punch or incisional biopsy, is inexpensive to do even if you have to pay for it yourself, and again you move towards a finite diagnosis and staging. If you are positive for cancer, this will trigger all the secondary tests to determine how advanced it is, where it is anatomically and more.

It should not be rocket science to determine that antibiotics are not working after the protracted period of time they have had you on them, and that it is likely something other than bacterial. This leaves auto immune diseases, viral and fungal infections, and of course cancer.

Most here will tell you that you have to be your own advocate, and many fought to have the tests done that showed that they did indeed have something very serious. Needless to say some also have great lawsuits for delayed diagnosis as well. Your story is all too common on these boards.

I'm also curious about your "treated for external HPV" comment. Do you mean you had warts?

Being confirmed HPV+ through a FNA (biopsy) which, as Brian says is the ONLY way to confirm the existence of oral cancer, I have spent a great deal of time learning as much as is known about HPV and everything that Brian told you is 100% correct.

BTW HPV related oral cancer is not that rare anymore. In fact over 70% of the cancer now found in the Orophyrnx region which includes the Base of Tongue and Tonsils are caused by HPV and usually the strain HPV16 and with the decline in worldwide tobacco use, HPV is fast becoming the leading cause of oral cancer.

There is a condition known as Recurrent respiratory papillomatosis which is associated with HPV and does cause bumps, if you will, in the respiratory track making breathing difficult. It's more common in children but adults can get this as well but I doubt from your description that is what you may have.