How am I feeling ahead of my hysterectomy? It’s complicated.

I’m processing my feelings in the best way I know how – writing it down.

I am having a hysterectomy because I have a large growth on my ovary. I have had symptoms which I thought were related to bowel conditions for six months. The ovarian cyst was detected last month, the day I arrived back in Australia, after seven weeks overseas.
Currently I have pain where the cyst is, and I’m tired. Some of bowel symptoms have decreased, thank goodness, but some remain.

The ovarian cyst is large and it may be cancerous, but we don’t know yet until I have surgery. All non invasive testing options have been exhausted, and now the only way to test is to remove the ovary. And my uterus and cervix will be removed too. They can test for cancer during surgery.

If it is not cancerous, they will stop there. If it is cancerous, they will take the other ovary, pushing me into early menopause. 

It’s a lot to take in. Exploratory and preventative surgery for potential cancer, resulting in possible menopause.  And of course the surgery itself, which may have a severe impact on my skin. Cuts and grazes heal well so I am hoping that this applies to surgery wounds too.

I asked what if I didn’t want surgery? The gyno-oncology surgeon said that the ovarian cyst would grow, and the pain and other symptoms would worsen. Chemotherapy and radiotherapy would be hard on my skin. More than one operation would be hard on my skin. 

So much to consider.  

So many what ifs. 

I might have cancer. I might not have cancer. All of my symptoms point to ovarian cancer’s symptoms, but the tests to date are inconclusive. And the doctors have encouraged me not to get ahead of myself, and so I haven’t read much more than the symptoms for ovarian cancer, until after the surgery, and maybe then I will be able to close that cancer handbook on that page.

But either way the result will be the same. I won’t have a uterus or cervix or or or two ovaries, and I may go to menopause at a time that I might not be ready for.

My body autonomy feels like it has been taken away, even though I know it’s for the best. I have prided myself on being in control medically – stopping having medical photography when I reached puberty, and saying no to drugs that would make my skin look “better” but compromise my quality of life by impacting other parts of my body. 

Now, there’s no chance of having children. Even though I am not particularly maternal, that I am 42 and my natural chances are low, and that Adam and I enjoy our free time, I still value the choice and chance. And I love the children in my life, and I have a close relationship with my Mum. But now I definitely won’t be a Mum, even though a month ago, I didn’t want to be a Mum anyway. 

I was once offered a large bribe not to have children, so I wouldn’t pass on Ichthyosis to a child. While I was undecided about children then, age 33, was indignant and defiant against taking that ableist bribe, because I wanted the choice to have children to be up to Adam and I. All disabled people deserve that choice. It is no one else’s choice to make, and having a child with Ichthyosis would not be a tragedy, especially as their mother would have Ichthyosis too.

It’s also an odd feeling when menopause may happen immediately, even though I don’t know when it would naturally start, or how it will impact me.

When I was told I need to have a hysterectomy and there may be a chance of early menopause, I anonymously asked a support group of people with Ichthyosis what the impact of menopause has been on their skin. I didn’t go into the reasons for asking,. The response I received was brusque, dismissive even, and quite a shock. “It is just like any other woman, you have to deal with it.” Not so supportive.

Ideally if I had the choice to go through menopause in my body’s own time I would be having a lot of time to research menopause. I had already slowly started to do this, just by way of having many friends in this age group, and consuming media about it. I’d have in place  the things I can do to make my life as comfortable as possible. But with all of the possibilities presented to me, feeling unwell and managing work and life, I don’t have that luxury of time. 

And the exchange with the other woman with Ichthyosis reminded me that so much money is spent on research for eradicating the gene that causes  Ichthyosis, thus eliminating people with Ichthyosis, rather than focusing on people living and existing and thriving with Ichthyosis. And so it gives me a reason to speak of my experience, again, so others don’t feel so alone. 

I don’t want to pit diagnoses against each other as I loathe the Oppression Olympics. But, menopause, while Isn’t an illness, has a huge impact on the body and the mind. Ichthyosis can mean excruciating pain and also infections can be deadly. And this type of cancer, if I have it, may cause me to die prematurely. But I also know that there are huge advancements in medicine and I may survive it, if it’s cancer. It’s a lot. 

It’s complex. I am hoping it’s not cancer, and that my body can go through menopause in its own time. And I’m hoping to feel well again.

If it is cancer, I’ll take it step by step with the medical team, Adam, my parents and friends and colleagues, just as I have been doing for the last four weeks. 

If my writing has helped you or made you think differently about disability, you can buy me a drink. Thanks!

The post How am I feeling ahead of my hysterectomy? It’s complicated. first appeared on Carly Findlay.