The pain is real, but now I have to learn to live with it.
It was a relief when I got my first period for my parents. I was born with a cyst the size of a grapefruit on my left ovary that was operated on immediately, so they had always been worried of permanent damage. From there I had extremely heavy periods, severe cramps and a lot of fatigue. But it was not something I thought was severe enough to warrant any concern. I could manage it, I wasn’t in crippling pain, it could have always been worse.
Fast forward a couple years and here I am in hospital after a major car accident. A couple of surgeries later and a long recovery, I had survived and managed to get through what was the worst for me. This seemed to set things in motion though. My body didn’t want to settle and the period pain started getting worse. Sex become very uncomfortable and I knew that it wasn’t normal. I am lucky, I had a doctor who listened. Even with what was a long process of trying different hormonal treatments (different pills and IUD) I was in the system and getting looked after. Finally my first surgery came around in 2015. Wide spread Endo but we had caught it early enough that it was all cleared easily. I remember thinking how confused I felt. It was all real, the pain I had been experiencing. But now this could be something I have to deal with for the rest of my life. I got the Mirena with the surgery to help slow the growth of it coming back and was hopefully on my way to a good recovery.
Due to previous surgeries however, I had to go on nerve blockers short term as my nerves had over sensitized. I had 3 and 1/2 great years and then the pain started again. I was referred back to my specialist and I was put on a 3 month menopause. I was willing to do it, if it meant there was a chance wouldn’t have to have surgery again. But after going through this, the surgery was still the best option so April 2021 I went in for another surgery.
They cleaned everything out and back to recovery I went. I had to go on nerve blockers for the next 6 months, went through a pain clinic and decided to look into a nutritionist.
I am trying to get my body back to where I feel like me again now. The process is long and drawn out but getting there. I am not completely pain free but with changing how I eat and taking the time to recognize the signs I can get around the worst cramps normally. But the thing that we don’t tend to talk about as much is what this does to our head. Constant pain, doubt, frustration and anger. Thinking that your selfish for taking up a place when you know that there are women suffering more but trying to convince yourself that you deserve to feel better too. The guilt felt when your ups and downs effect your partner, stop your from going out and doing normal activities. The anger you have towards your own body for things you can’t control. Constantly being tired and not knowing how long this wave of pain will last.
I am still struggling with this, managing how I feel about it all even after years. I know we just have to keep putting one foot in front of the other, some days its easy and others its so very difficult. But we do it and carry on.
I hope more women feel comfortable telling their story in this way, as I would not have had the courage to share this if I had not seen the other stories.