Sorry in advance for the long post. Similar to many others on here, I am dealing with extreme anxiety in regards to HIV testing. While I have been out and sexually active for over a decade, and have been tested many times in other contexts, this most recent experience has resulted in symptoms that have caused me severe physical and emotional distress, exacerbated by the fact that given my research and understanding of HIV transmission, to have been infected with HIV in this way would be very unlikely.
Essentially, I recently spent a weekend with a friend who hosted me at his house during a conference. I had been on PrEP (Descovy) for approximately 1 month with regular use (100% morning adherence). When I found out he was poz I was admittedly hesitant, but he was very responsive to my request to take things slowly and we were very mutually respectful. He assured me he would not push anything sexually and that he was undetectable and had been for about 15 years per his report. Other than completely safe behaviors such as sharing the bed, sharing food and a vape pen, cuddling, holding hands, and kissing on the cheek multiple times, the only sexual contact we had was some dry humping and some very brief mutual masturbation that did not lead to climax and a bit of pre-ejaculate I felt through his underwear. On the last day of our trip, we did share one kiss on the mouth but it was not an extensive “deep” makeout and only lasted two seconds. My biggest concern is that I knew I had a canker sore on the inside of my bottom lip, which was pretty inflamed and slightly painful, but to my knowledge there was no active blood in my mouth or his. Honestly, if I hadn’t had that I would have been comfortable kissing him more, but he was okay with our one kiss and respected my boundary.
None of this would have caused me any concern had it not been for the fact that two days after returning, the first symptoms I felt was some tonsillitis, which only lasted a few days, albeit with some swelling cervical lymph nodes that lasted a few days beyond that. The day after the tonsillitis I came down with an extremely runny nose that leaked; I have allergies so I’m used to congestion, but this was a lot, but again this only lasted 1-2 days. During this time I began to notice itching all over my body; not quite a visible rash but feeling like my skin was redder and more sensitive all over (though an itchy patch appeared on my wrist one day for a few hours). Again, this would come and go but faded after a few days. What has given me the most trouble beyond this is that sometime in the first week after the event, I began to feel itching, burning and swelling in my groin and inner thighs, which resulted in waxy skin, and not really redness but some pretty intense pain, which would sometimes radiate up and down my hamstrings on both sides to my knees and calves. A few weeks after that I began noticing consistent swelling and discomfort behind my knees. Intermittent through all of this, I felt some swelling in my left armpit, as well, and it also included itching in both. Most recently, I noticed swelling and pain under my left ribcage which believe is my spleen because it radiates up to my left shoulder sometimes.
I was on a long trip with family for the holidays internationally and was not able to go to the doctor until I returned. In this time a lot of symptoms have waned, but the worst is still my legs which some days is almost completely gone and other days returns in full force. When I did go to the doctor to try to get a sense of what else it could possibly be earlier this week, he was somewhat dismissive of my HIV concerns, saying that if all we did was kiss, he is undetectable, and I am on PrEP, there is no way I could be infected. What I perceived to be swelling he didn’t seem to perceive anything, particularly behind my knees (albeit that day my upper legs were not as painful). But, when I tried to ask what other possibilities could be for some reassurance, he just said “lots of things” and because he works at an urgent care unit, was unable to indulge more of my HIV questions.
I know I obviously need to be tested and I am currently in the process of working out some emotional and logistical pieces so I can get results when I am not alone. This is just such a conflicting circumstance. On the one hand our behavior (no sex, PrEP, and alleged undetectable) was so safe so statically it seems so unlikely. But on the other, my symptoms are so severe and the timing so exact it just doesn’t seem like it can be anything else. The worst part is that when I report this people treat me like I am overreacting because I am so anxious. I would like to believe my doctor and the distress hotlines which tell me my extreme stress is making it worse, but I’m not making up these symptoms; I can see them and feel them. The lymph node swelling and pain in my groin has lasted almost 8 weeks. I am tired of feeling crazy and people dismissing my fears because of the science.
I know I need to be tested. That is the only way. But if there is anyone out there that can help me understand some of this more I would appreciate it more than anything. Could there have been something with my partner’s strain of the virus that was incompatible with my PrEP medication? Was I less protected because I was told to take my PrEP every morning and we interacted in the evening? Is undetectable really untransmittable in all strains and cases? Obviously the mouth sore is concerning but to my knowledge there has only been one transfer of HIV in this case and that was well before PrEP. What are the chances of all these things failing? I am just so confused and desperate. I am trying to take it one day at a time and have my test date scheduled, but I feel like I am falling apart.
Thank you for your time and all the best to all of you dealing with this difficult subject.