Lai's Diary - Month three

Have you experienced any genital herpes outbreaks since the last diary sheet was completed?
I think I had my first true recurrence last month. This was about 5 months following my initial outbreak. There was one other time I thought that I might be having one, went ahead and took the medicine, but wasn't sure. This time I experienced symptoms that were closer to the first one. I was experiencing painful urination and think I saw a visible blister. Looking back I realized I had a few days of "being uncomfortable" (which must have been a prodome).

It's funny, while for most a recurrence is emotionally upsetting, I'd been waiting for so long for one to happen that I was almost relieved as I now know what to expect.

What further questions have occurred to you since your last appointment? None.

How useful was the information and counselling given by your physician during your appointment?
As I've stated in past diaries my initial session was not very helpful at all. I was told over the phone and then several weeks elapsed between my initial diagnosis and my ability to get a counselling session with my doctor. Since so much time elapsed between my initial diagnosis and my one (and only) counselling session with my doctor, I did not find this session very helpful. I'd already found out most of the information I needed by researching it myself.

How do feel about your genital herpes at the moment? (emotionally & physically)
What are main concerns/fears?
While for the most part, I am better both physically and emotionally I am still struggling.

I was relieved to find out that I have HSV-1, which means I am less prone to recurrences. I went 5 months before my recurrence (taking no medicine) and was happy to know that it wasn't as painful as the first one. I'd spent months worrying if I'd even know I was having another one, or if I would recognize a prodome. Now that I've experienced one, I can hope I'll learn to recognize the early signs.

I've only just started dating again and must admit that I am most petrified of having to tell someone.

Have you shared your diagnosis with any friends or family since your last diary sheet? If no, are you considering confiding in anyone?
No. Still considering telling my parents mostly due to the fact that I've found myself starting to say that I've got "group" tonight and then remember that they don't even know that I have this and am attending a support group. Since I've shared this with a few close friends and talk openly about it with them it has almost become normal and I forget who knows and who doesn't. I am anxious not to disappoint or worry my parents (especially my mom) and don't feel ready to tell them just yet.

How would you rate the following aspects of your life at the moment?

Sexual relationships: Since my last journal I've stopped being intimate with the gentleman from whom I contracted GH. I think we "dated" for a month or two after our diagnoses, but did so out of fear/comfort. I think we knew it was never a solid relationship and we went our separate ways, simply disappearing out of each other's lives.

After a period of several months of not dating anyone, I'm slowly re-entering the dating world. For a while I've not let myself get close to the men I've dated. I've kept it casual and not allowed them to progress into something more intimate. Actually I was withdrawing and not wanting them to even begin to get serious. Either I knew it was never going to work and I cut things quickly, or I got too scared and stopped returning phone calls.

For the first time I've found myself dating a REALLY nice boy whom I just adore. He is the first one I've ever even considered telling. The fact that I like him this much makes it equally as frightening. Finding myself wanting to be close to him, but knowing that means I'm going to have to tell him soon scares the hell out of me. Half of me wants to run, but the other half likes him so much that I think I'm willing to risk getting hurt.

General social life: Social life is good. Have a good network of friends with whom I go out with regularly (usually at least one night a week). And now that I'm allowing myself to date occasionally this has been nice too.

Work: Busy as usual but not as satisfying… Over the last few months I've found that I am less motivated and that I get stressed out a lot easier. I don't know if that has to do with the numerous changes that have occurred at my work or in my personal life (herpes being just a part of it). I suppose it is a combination of both.

As a way of compensating I'm finding myself exercising like crazy. I used to workout 3-4 days a week and I'm now up to 5-6 days a week. I find it a great coping method for stress. I can leave work nearly in tears, hating my job or my life and after one workout - I am back to myself and feeling inner peace again. It allows me to view the world more clearly and helps me sleep as well.

Have you sought information on genital herpes from any sources other than your doctor? (eg website/patient support groups/leaflets) If yes, please give details.
I haven't sought out any more new information. Upon my initial diagnosis, I visited nearly every website, joined the online support group, and ordered the "help pack" from one of the national agencies. Since my last diary I began attending a local support group for those with HSV or HPV.

Have you communicated with, or would you like to communicate with another person with genital herpes?
Yes, through an online support group and now through the local patient support club, the H-Club that has just started in my area.

Are you aware if any support groups exist in your area?If so, are you planning to attend?
Yes. Thankfully, my area just started a local H Club. We've had three meetings (I've been to all three), which are facilitated by a nurse practitioner and a psychologist. I've been active in trying to get the information out to the general public by mailing/emailing our group's information to local newspapers and herpes websites. I can't tell you how helpful this group has been.

Are you currently on any form of medication for genital herpes? Eg episodic or suppressive antivirals
As I have HSV-1, I have chosen to treat my genital herpes episodically. However, now that I may have had a recurrence, and am hopeful that I will be entering a relationship with someone who does not have it, I will soon be choosing to treat it supressively. Of course, if all does not go well when I share this with the man I've begun dating, I will go back to treating it episodically.

Do you feel that your current treatment regime allows you to manage your genital herpes satisfactorily? If not which aspects would you like to change or improve? Having the prescription to treat my genital herpes supressively was a huge relief. Even though I did not start taking the medicine right away, it meant a lot knowing I could start this any time I chose. Now I am faced with the hard decision as to what I should do. I do not like the idea of taking medicine on a regular basis, but at the same time do not want to be plagued with outbreaks.

It's funny how I will/would take it faithfully to protect a partner, but won't take the medicine otherwise. Sometimes, I hate the thought of having to take daily medications. Maybe I feel this way because if I accept to take it each day I have to admit to myself that I have this infection. (Which is the one thing I'm trying to forget in order to get my life back together)

Looking back to the time when you were first diagnosed, how do you consider that your life has changed? (if at all).
In some ways my life has changed a great deal, while in others I see that I am still the same person. When first diagnosed I was sick to my stomach, feeling my world was ending. Three months later and I realize that I am still the same person, who is good at her job, has friends and family who love her, and in reality is that same person she was before herpes. Not that I don't have my down days and weepy nights- mostly wondering if I'll ever find an acceptable partner who is willing to accept me and love me even though I have this. In my head I know anyone who won't isn't worth my time- but that is still a fear.

But I am slowly starting to heal. The fact that I'm even considering opening up to a man that I have this tells me that I'm progressing to new stages of acceptance. Some days I actually forget I have this and I find it amusing that at my support group meetings I'm the "veteran" offering advice (as a lot of the members of my group are even more recently diagnosed and a lot less informed about this condition.)

Every one says that there is life after herpes. While I'm not totally convinced, I'm certainly not ready to give up on the fact that they are right!

What would you suggest that the medical professional or society as a whole could do to make life easier for people living with genital herpes?
I was very dissatisfied as to the way in which my infection was handled. If a doctor's office tells someone news like this via the phone, they need to require that the patient immediately schedule a counselling appointment and or give them a follow up phone call. If I had not been proactive and taken the initiative, I would not have ever been given the information I needed.

In addition, I was appalled that my test results did not indicate whether I had HSV-1 or HSV-2. They did some "fast" test and even the lab that did it couldn't tell me my type. This required that I schedule additional blood work so that we could know my type.

Doctors need to find out about local support groups and give this information to their patients as well.

Click here to view a healthcare professional's commentary on Lai's diary.