I felt obliged to write this post because I often find words to be healing and helpful. Right now, I think I need a whole lot of healing and help due to ongoing issues with my lovely lady bits. I am also hoping that it might encourage other women who are struggling with these invisible diseases to realise they are not alone.
It all started when I was 14. Each month I would be in immense pain, curled up in a ball, crying and begging for it to stop. This went on for years, my poor father had no idea what to do and put it down to normal period pain. It wasn’t until I was 20 when my stepmum sent me an article about endometriosis, that I finally acknowledge this pain wasn’t “normal”. I begged a doctor to do an internal exam, and that Is when I was diagnosed with endometriosis.
I had missed so many days at school and work, due to this debilitating disease over the years and yet no one could really explain to me or tell me how to control it. My male bosses and colleagues just assumed I had “period pain” and several times comments were made about how much of a sook I was.
Little did they know that I had my heartbroken by the doctors when they told me that conceiving children naturally might be out of the picture due to the extent of my endometriosis. This “period pain” was a constant reminder that while I experienced pain to the point I couldn’t walk for a day or two every month, it felt so pointless considering I may never be able to have children.
Isn’t that the sole purpose of a female ? I mean anatomically speaking. I felt like a complete and utter failure; who would want to date me or marry me when I may never be able to give them children ?! What is the point !
After an operation to “scrape” the endometriosis away, I finally felt human again – the pain had finally subsided and for the first time in 6 years I understood what normal period pain was meant to feel like. I finally felt relief.
Fast forward 6 years. Once again, I am in incontrollable pain for weeks on end. I fear the worst thinking my endometriosis has returned in full force and that I will have to endure another round of internal exams, prodding, poking and hospital stays with little information from doctors to go on.
However this time, the diagnosis is different. I have an extremely enlarged right ovary and triple the amount of normal cells growing on it. I wish I could remember how many doctors or scans I have had in the last three months. All the conflicting information and hospital visits took a further toll on my mental health. At one point a doctor told me it could be ovarian cancer, at another point a doctor said it was “nothing” and “completely normal”; yet I was still writhing in uncontrollable pain and unable to drive by myself for fear of having an episode and crashing.
Then after almost 2 months of non stop pain, I was finally diagnosed with Polycystic Ovarian Syndrome and that my endometriosis had returned. I was told that I would have it for the rest of my life and that it is also heriditary. Was I given any help or advice on how to handle it? No. I was told I could be in pain whenever a cyst randomly ruptured, and that it would come and go. The best part is, once again my chances of conceiving were reduced drastically. This was pretty heartbreaking news, particularly after one doctor had even told me I was suffering from a miscarriage weeks before hand.
So what does it all mean? What does one do when they have an invisible disease that you just have to “deal with”? Where do I even begin?
Well firstly, I had to quit my job because I can no longer risk driving all the time due to the fact that I might just have an episode of extreme pain and can’t risk crashing. My workplace failed to understand the severe anxiety I faced each time I drove alone. It’s extremely hard to explain to someone that at any point something inside you might just pop and cause severe abdominal pain.
Secondly, I have to watch my partner suffer because not only did I put the financial burden on him of providing for us both, but now he has to decide if he sees a future with someone who may not be able to carry his children, or at least not full term.
Thirdly, I have to pick myself up. I need to move forward and figure out how to control the pain, how to ease my mind and how to get a quality of life back without the fear of pain or rejection. Whatever my future holds, I am sure I can tackle it. Right now it just feels like I have to start all over again and take life one day at a time.
I wish there were more education and understanding of women’s health problems because it is incredibly difficult to explain the pain and torment you go through on a daily basis or the guilt I currently feel.