Today marks the one-year anniversary since I had a total hysterectomy with salpingo-oophorectomy (removal of my ovary and tube) and one-year of living with estrogen deficiency (aka living with surgical menopause). I try my best to live my life looking forward, rather than back, however I feel it’s important to share my story up to this point so other women can benefit from what I’ve learned along the way, and also so they can follow me in my journey ahead.
So, to begin with, an introduction. Hi, I’m Deb, I’m 36-years-young, married with 2 young children (my son was born in October of 2012 and my daughter April of 2014). In January of 2015 I went to see my GP terrified that I had Ovarian Cancer (OC) having seen a recent post on Facebook by a friend who had tragically lost her sister to Ovarian Cancer. Reading this friend’s post I recognized myself in some of the symptoms of Ovarian Cancer: persistent stomach pain, persistent bloating, difficulty eating/feeling full more quickly, needing to urinate more frequently, amongst several others.
Following a battery of blood tests, scans, and gynecology appointments, my medical team finally discovered an undetermined growth on my ovary. Thus I underwent surgery in June of 2015, where it turned out that I had a grapefruit sized Borderline Ovarian Tumor (BOT) on my left ovary – both the BOT and ovary were removed. This basically means that although it wasn’t the worst-case scenario when it comes to ovarian cancer (Hoorah!!), I did have a form of ovarian cancer. Borderline Ovarian Tumors are a low malignancy potential cancer, and so my tumor was a low malignancy potential tumor. My treating physicians couldn’t say beyond a shadow of a doubt that there was no malignant cells in my tumor as they can’t test every single cell, still had I had a different kind of ovarian cancer other than BOTs, it could have been far worse prognosis for me.
I was told by my doctors that BOTs are basically a bit of an unknown in the medical community (due to insufficient funding and adequate research), as they don’t yet know why they occur (whether their cause is genetic or environmental) nor if/when they would turn malignant in the future. BOTs also regularly develop bilaterally, meaning they favor growing on not one but both ovaries. So basically there was a chance and some probability that I could develop another tumor on my right ovary, that could possibly become malignant, therefore life limiting but there was also the chance that nothing would happen again.
My medical consultant’s advice was that I should have a total hysterectomy and salpingo-oophorectomy to reduce the risks altogether (this treatment wasn’t even on my radar so it hit me like a ton of bricks when she said this! I had never imagined losing my reproductive organs, even worse losing them so close together at a young age.) I was given 2 options –
1. Have 3 monthly scans for the foreseeable future to keep an eye on everything and wait to do the surgery until I would be closer to natural menopause age (age 51), with the added option that we could try for one last baby if we wanted to. Although this was something I really wanted and not having no. 3 will always leave a little sadness in my heart, I am grateful that I have 2 amazing, if not sometimes annoying, children. There are many young women who don’t get this option and go through gynecological cancers/conditions and treatments before they get to have a child (if they had the wish to do so).
2. Recover from the first surgery and then get booked in as soon as possible for the next so that the risk would be altogether eliminated, but with the knowledge that I would be put into Surgical Menopause and be left with a chronic health condition for the rest of my life.
The options I was given made me feel like I had been put between a rock and a hard place! The thought of going through 3 monthly scans paralyzed me with fear! Knowing that each scan would bring me a strange sense of foreboding about what the technician might discover on my remaining ovary. However, I knew I wouldn’t forgive myself if I developed another Borderline Ovarian Tumor, especially if the outcome was worse the second time, knowing that I could have done something to take it all away. I was a mother to two children, a wife, and there were so many things in my life I had yet to do. The risk just felt too great to me.
BUT my other option… surgical MENOPAUSE… Well, that came with a whole new level of worry and unknowns. I could potentially still be 20 years away from natural menopause and there are lots of health risks associated with surgical menopause and having no estrogen at such a young age. I came to discover there were major differences between natural menopause and surgical menopause, namely that surgical is more like having a lifelong health condition that can effect your heart, brain, bones, skin and so on.
Menopause at any age can increase your risks of heart problems and osteoporosis but going through this risk at a young age can be life shortening, research says you stand to lose about 10-years off your lifespan if you go into surgical menopause without using hormone replacement therapy. You then have the hot flashes, foggy mind, mood swings, depression, anxiety, lack of sex drive, vaginal dryness, skin dryness, etc to contend with! Add into the mix that there is no one size fits all treatment or management plan for these symptoms but instead a plethora of approaches – Hormone Replacement Therapy (HRT), natural remedies, holistic therapies, going without anything, and even wearing a magnet in your knickers. You can hopefully see that this was not been an easy decision to make!