Hi guys thank you for this community. I am a lady aged 34 I was diagnosed with Hep B in 2019 already at chronic level, the doctor suspect I have had it since I was young hard to tell where I got it, I could have been born with it or I got it when I was sexually abused by my uncle when I was 5. however I lived a healthy life never been sick, never been to a doctor even had a son at 22. It was when I was doing a medical check for work that I found out, I was so devastated I wanted to die but I had a nice doctor who encouraged me. I have lost job opportunities because of this diagnoses which is sad. I am currently on lamivudine daily for the rest of my life.
However I am not well and I am scared to go to the doctor, my tummy hurts on both side and I keep on getting a running stomach and my appetite is limited. I want to go to the doctor but I am scared of the results but I last had my blood test in November and everything was ok, I go every 6 months.
I am so scared that something is seriously wrong and I don’t know how I will take it. It’s not my fault I have this but I keep asking myself why me .
I will really appreciate words or encourage, kindness and your advise.
I’m so sorry to hear that you’re not feeling well, and about the impact that HBV has had on your life. Unfortunately, there are a lot of places that will deny you a job, housing, or school admission due to hepatitis B. I would recommend reporting such instances to the Hep B Foundation’s discrimination registry. Hepatitis B Foundation's Discrimination Registry » Hepatitis B Foundation They may be able to help with advocacy to get laws passed that protect you against this type of discrimination.
In terms of your symptoms, I would recommend going to the doctor and getting checked out, especially if your symptoms have been going on for more than a couple days. Unfortunately lamivudine has significant issues with drug resistance when used to treat HBV, which means that your viral load can rebound after taking it for a while. The good news is that there are other medications that are highly effective and have very low likelihood of drug resistance, so you may want to consider switching.
Well noted I will Go to the doctor right away and talk to my hepatologist about this luckily I am a patient at the liver clinic, but when I wrote the appointment secretary if I can book she told me to go to my local clinic or doctor they will then observe me and call the liver clinic if it’s urgent which requires more time but I guess that’s procedure
@maks I’m really sorry to hear your situation.
Never be afraid to go to doctor because you are scared of results. Even if bad news.
Time is very important. The sooner you get treated the better the outcome.
I agree with all @et5656 as said.
Has your son been vaccinated yet? Or tested?
I strongly recommend he be tested and vaccinated, if not done already.
@Caraline thank you for your message, I will go to the doctor tomorrow and ask him to make an appointment for me to see my hepatologist who I can’t just walk in and see without an emergency apparently.
My son has has been tested and vaccinated so happy about that.
as others have noted, you should definitely go see a doctor. I go regularly as a chronic HepB’er as well (every 6 months to monitor). You should not be afraid to go to the doctors as their literal job is to ensure you are alive and healthy. Please feel free to reach out if you have any questions. This is a fantastic support group and I feel most people on here are willing to offer help in any way they can.
Hey Maks. I totally understand where you are coming from and you are not alone. I am not an expert like most on this forum just a 36 year old female living with chronic Hepatitis B with a story similar to yours. I found out in 2020 by accident and it’s a constant mental struggle everyday. I am also fearful when that 6 months checkups come around but I have to keep telling myself the “why” behind the management. Which is to ultimately monitor any changes to keep my liver healthy. Hell my check up is tomorrow and Although I dread the ultrasound and blood work I know it has to get done to protect my liver. You got this! We got this!
Hi @SheLaw20 thank you for your message and we are around the same age, we need each other. Good luck tomorrow for your check up . And tell me are you married or do you date ? How do you bring that up in relationships ? Are you on any meds? I would like to talk to you more
Hey @maks yes I am engaged to a Hepatitis B Negative Partner (I am an open lesbian female). I am going to be honest after about the 5th date with my partner I just broke it to her. She was 100 percent understanding and we both joked about making sure she was vaccinated before we both had the “hep hep” . It was our way of dealing with it. Anyway, that was 6 years ago. We have been together ever since and about to purchase our second home together. She is fully vaccinated against the virus. I live in America and honestly the stigma isn’t that bad like other parts of the world so I am grateful for that.
Hi @maks I am a just ordinary passer-by but would like to talk to you about the how normal the people with hep B can live. They are generally healthier than other people because they see doctor regularly and are cautious of their eating habits and others. You can live long and healthy life like others and I am happy to hear that you are in a good care.
In the future, you can be a hep B positive speaker and work in hepbvoices.org.au.HOME | Hep B Voices Aust which is greatly rewarding. Good luck with you!
Hi @maks
I can see we’re in a pretty similar situation, so I just wanted to reach out. I’m a 36-year-old woman, and I found out about my hepatitis B last September while trying for a baby. At the beginning, I was honestly terrified — it was a really difficult time in my life. I also learned that my liver is quite affected (FibroScan showed F3), which made it even more overwhelming.
Despite that, I’m not giving up. My blood tests are currently good, and my viral load is very low, so I’m not on treatment. Most likely, I got infected as a very small child when I was hospitalized at around three months old, so the diagnosis came as a huge shock — especially since I was vaccinated later on.
Thankfully, my husband is Hep B negative and incredibly supportive. We’re really going through this together.
Please don’t lose hope — this forum is full of inspiring and positive stories. I’m currently pregnant, in my sixth month, and even though I do have moments of being scared, I try to stay positive and enjoy life as much as I can.
If you ever need to talk or ask anything, feel free to reach out
@SheLaw20 omg I am inspired by your story. I have tried dating but I’m afraid of being judged or that they won’t understand my condition. I do hope to find love some day. I live in South Africa there really isn’t stigma just ignorance. To be honest I didn’t know about Hep myself until I was diagnosed. I really haven’t told a lot of people around me just my best friend and sister know about this. Congrats to you and your partner on your 2nd house way to go ladies!!
Congrats on your new baby on the way, and I’m so inspired by you and your story and you have a loving understanding husband that’s a plus. Reading all the stories here I feel seen and heard. I feel so much better since finding this platform it saved my life.
Thank you for your message and words of encouragement, this platform helped me really. I have gone on the link I would love to be an advocate for hep b so much, the word needs to be out there. Most people go through life without knowing they have this condition, hepatitis test needs to be mandatory for all especially pregnant women. There’s just not enough awareness out there. But I see this organisation on the link is in Australia and I’m in South Africa but I have registered anyway.
Thank you everyone in this thread for providing such a positive and supportive environment for each other. @maks, welcome to the forum and thank you for sharing your story. Hope it all goes well.
Indeed, Hep B voices Australia is Australia only, but we love having supporters from across the world!
Hey @maks same! I didn’t know what hep b was prior to diagnosis either. You will definitely find love! If your love is negative just make sure he is vaccinated fully against the virus and be sure to check for immunity. Hep B is just like any other condition that needs to be managed. I found out on accident while trying to get pregnant. It all came as a shock to me! We got this though
. It was our way of dealing with it. Anyway, that was 6 years ago. We have been together ever since and about to purchase our second home together. She is fully vaccinated against the virus. I live in America and honestly the stigma isn’t that bad like other parts of the world so I am grateful for that.