Women's Sexual Health and Serious Illness

Three months after my bone marrow transplant, my husband and I attempted to rekindle intimacy by going away for the weekend. I had slowly regained some of my strength and wanted to do something for him, for us. Though notably awkward, we tried to connect like husband and wife. He tried not to see me as a infantilized vomiteur and I tried to forget that I was going to divorce him before all of this happened. 

And that’s when we discovered that I no longer had an operating vagina or sexual sensation.

How could something like this happen? I lived in a hospital for over three months and made my way to different specialists as needed. I was checked by ophthalmology (severe eye dryness), pulmonology (constant risk of pneumonia), dental (mouth sores), but never sent to gynecology. In the early 2000s, there was not a lot of research on what an allogeneic bone marrow transplant could do to a woman’s sexual health. As a rigorous self-advocate even back then, I did a ton of research and everything was focused on fertility since transplants usually resulted in ovarian failure. And that’s all the doctors discussed with me. 

When I saw the NYT article about the lack of understanding/training/interest in women’s sexual health that still proliferates today nearly 20 years after my transplant, I knew I had to share my story. The despair shared by women in the article was familiar - they had undergone a medical procedure unaware of the risk to their sexuality, to later find it destroyed. Like me, their doctors did not know how to help them and would just pass the buck to someone else.  

I went to countless doctors begging them to help me. Like the experiences in the article, most just referred me away to someone else or prescribed me. I didn’t know that my issue was such a mystery to medical science. After researching online (again) I found an article about a doctor who worked on usual cases. When I met him, I knew he was different. He was intellectually curious and willing to go the extra mile to figure this out. He was not an expert like Dr. Rachel Rubin featured in the article. He was one of the rare ones that admitted he wasn’t certain of the path, but was willing to try and would not give up on me. After appropriate hormone therapy, minor surgery and dilators, I slowly became me again.

I was one of the lucky ones.  I am sure I would have never regained my sexuality without my perseverance and a medical partner willing and able to go outside his comfort zone and not give up.