Real People Stories – Sarah

My Test story with HPV 45. I’m Sarah, 33 years old, and I was diagnosed with a test for HPV variant type 45 over a decade ago. The virus typically clears within two years, but in my case, it persists despite no intervention available. Fortunately, my smears consistently show low-grade flat warts. I remain in perfect health and undergo biannual STD Profile tests to monitor for any progression to stage 2 lesions, which would necessitate colonisation.

Why am I writing? First, I support each of you in your fight against this virus and your testimonies moved me a lot. 

Relationship Challenges: The Disclosure Struggle

Then, despite the absence of serious lesions in my case, this virus still managed to ruin my life… how? Until now, I had opted for transparency towards my life companions. The problem is that men are not very courageous when it comes to STDs. Since it can be transmitted despite the use of condoms, the announcement to the newly chosen one generally happens quite early in the relationship… a result of the races, that more than two out of three men fail me when I tell them about it! It’s very hurtful and humiliating, infuriating, unfair!!!

Personal Experience: Rejection and Emotional Impact

The first time my husband left me for this, I had a wonderful relationship for 2 months with a man who fulfilled me and respected me enormously, and overnight, I had become a leper in his eyes! His reaction affected me so much that shortly after, I developed guttate psoriasis. Over three years, it left me with a hundred small depigmented white STD spots on my body, including my neck and face. When you have very dark skin, it’s not pleasant!  In addition to having HPV, you look like a spotted cow!!!

Stigma and Self-Image

Since 2008, when I learned that condoms did not prevent contamination, 4 men (out of 6!) have left me because of this virus. No matter how much I explain that the risk of cancer is very low, that one in three people are affected by it, it doesn’t help. The worst is that, in principle, they are even too cowardly to admit that this virus scares them; they suddenly change their behaviour and invent fictitious problems or disagreements… others would like to have me undergo an operation whose risk is greater than that of keeping my lesions low grade!!! I don’t have children yet. And I would like to keep my cervix in its full range for as long as possible!!

This bad experience happened again, and I have decided not to tell anyone about it anymore because honesty doesn’t pay; it’s a shame. 

Advocacy and Awareness

I would be interested to know if there exists a defence movement in this sense… we keep stating that this virus causes 98% of cervical cancers, yes… but without diminishing its importance, we could also clarify to what extent cancer develops (2-3% of infected women)!

I think this aspect is very little addressed, and I am very affected in my love life! And I have HPV, not the plague!!! 

Good luck to you all!

Madison

3 years ago…

Good evening, 3 years ago, I went to see my STD Test gynaecologist because my partner was diagnosed with condyloma. The smear was good.

Biopsy and Diagnosis

Last year, I had my check-up smear, as I had my daughter by in vitro fertilisation every two years. But I had some odours which were causing me problems. My gynaecologist did the smear but told me he wanted me to do a biopsy. Three weeks later, I did a biopsy, which indicated HPV with high-grade lesions.

My gynaecologist performed a cervical amputation on me, and the analysis of the cervix revealed an invasive carcinoma and a deep infiltrating adenocarcinoma. At the time, I had requested an STD-based hysterectomy instead of amputation of the cervix. The HPV cancer was taking my family away little by little, and I didn’t want to take any risks.

Seeking a Hysterectomy

The cancer STD centre referred me and then declined to perform a hysterectomy because of my age (only 33). Consequently, I underwent a lymphadenectomy, which yielded positive results despite affecting a nerve. But I made do with it (and with good treatment for neuropathic pain).

On the other hand, since the HPV amputation, I have been bleeding. It’s been a year, and I bleed every day, sometimes with haemorrhages that last 2 weeks. I bleed, especially during intercourse. I must have had around ten reports in a year, not that I don’t want to, but all this blood disgusts me and tires me.

Personal Struggles and Medical Journey

I was told that I would never get pregnant naturally. And also that I was refused PMA because of the risk of cancer recurrence due to hormonal treatments. But they still refuse to remove my uterus in case I want children. The alternative offered to me is estrogen since progesterone does not take effect. My new STD specialist gynaecologist is not keen on estrogens because they also risk making cancer recur. I’m at an impasse and no longer even feel like a woman. A doll that gets passed around from one HPV doctor to another. And does what we want. I cannot find any information on post-amputation bleeding of the cervix and cannot find any solution that is safe for my health.