I was first diagnosed with Myelofibrosis when I was 27 years old. At age 41 I had to undergo a Bone Marrow Transplant. When I was going in for my transplant, I was given the list of possible outcomes and changes, menopause was not something on the list that I gave much thought to at the time. In fact, I thought it would be as simple as not getting my period, which didn’t seem all that bad. As someone who didn’t want to have my own family, I glossed over that specific area with my oncologist. No period, in my mind - no big deal, and that was the least of my worries. Staying alive was my number one priority. The last time I would have an actual period was during my treatment It was heavy, scary, and lasted for about 14 days, and even then, I didn’t realize what it meant for me.
A few months after leaving the hospital and wanting to be more intimate with my partner was when I started to have some very noticeable changes, specifically in the intimate side of my life. I no longer had a sex drive and had complications with GVHD in my vaginal area. Those two things combined made being intimate difficult and painful. Thank goodness I have a partner who is deeply understanding and caring, but even then, we’ve had a few moments that have been frustrating for us both; there were more than a few tears on my end. Every time I went in for a follow up, I checked the following two boxes: low sex drive, and painful sex. But when I went in for follow ups, other things seemed more important and to be honest, I was embarrassed to talk about it.
Recovering from a Bone Marrow Transplant is hard work: physically, emotionally, and mentally. I became stronger, started to feel better and I became an advocate for my vagina. I spoke up in my appointments about my challenges and being referred to a Gynecologist who specialized in chemically induce menopause and GVHD was a starting point. Things really started to get better for me when I started seeing a pelvic floor specialist. I also joined a support group for Menopausal women, many who were in a similar situation as me.
In hindsight, I wish I had spoken up sooner around the issues I was facing. Being able to take some action around the situation was helpful and having action items to work on instead of feeling like this was “happening to me” made me feel more empowered. I also started to deeply believe that just because our intimate life was different, it didn’t mean that it was a bad thing.
Taking time now (and it takes time) to be intimate looks a little different but it can still be beautiful and meaningful after treatment.
