Endometriosis: One year later

I can’t believe it’s been a year since the surgery for the endometriosis. Let’s be honest, I thought the surgery was the end of my problem and my pain. Little did I know that I was only entering the beginning of my physical and mental journey … again. I know I’m not cured, I know that the chances are that it will come back but today I made peace with it and it wasn’t easy to get to that stage. When I thought I was okay with it, I wasn’t and it was only a couple of months ago when I got my period for the first time after almost a year that it finally hit me.

Let’s rewind a little bit. Like I mentioned before, I had an unrealistic feeling that after the surgery everything was going to be fine and another chapter to definitively close. But it ended up being more difficult than I thought. After the sadness of finally discovering where all the pain came from, came anger. I was reading and hearing stories of other girls that suffered so much from this chronic disease. The constant pain or the difficulties of getting pregnant, the constant pain, undergoing not one but many surgeries, the intake of hormones, and the other consequences that it brings with. I just couldn’t relate to their stories. My story wasn’t that bad, nor the disease, the physical recovery nor the pain. No story was like mine. Luckily or not as it was due to a cyst, the disease was at an early stage, there was less endometriosis than the doctors initially suspected, the surgery wasn’t painful and I was back on my feet after 10days, I had no terrible side effects of the induced menopause, I got to take the same pill low in hormones as before and since the operation, I haven’t felt pain outside of my periods. I was trying to look at it on the positive side, keep repeating to myself that I was fine and lucky. But every time someone would tell me a story about another girl that had endometriosis or that I have to change my diet, I just got angrier. I thought to myself, I don’t need to hear this, I don’t want to hear this. It was a reminder that one day I might suffer like them and I didn’t want to suffer. And every time someone told me they were pregnant for a fraction of a second I was sad. I didn’t want to talk about the possibility of getting pregnant, I didn’t like people to touch me, nor people telling me I was going to be fine. I felt misunderstood, alone and so angry at myself. I know, that it was selfish of me to think like that. And I promise you I was fighting it. I didn’t want to feel like that but I couldn’t find relief.

Nonetheless, this wasn’t what worried me the most. What startled me was the feeling I had when looking at my body. I didn’t recognize it, I didn’t like it, it wasn’t mine anymore. And that worried me.

That feeling of being so disconnected from your body is horrible. And then seeing the scars… a constant reminder of the endometriosis. I was reading quotes of girls saying they were proud of their scars and they felt powerful. I didn’t. They needed to disappear. So, one day I thought: if I’m unhappy with myself right now, I need to do something about it. I started working out, doing things that I liked, bought an amazing oil for scars and little by little I started feeling better again.

Then one day, I realized I was getting mood swings, a bit depressed, blotted, and a slight pain starting to come back and then some red stains. I had been on the pill for 9 months by then… with no periods for 9months. Which let’s say it, was very nice but it was time for my body to have a break from the pill. Then the fear came back. The fear of pain was bigger than ever before. When you know that every month for 4 days you will be in heavy pain, you don’t think about it. You know it’s coming and you have no other choice than to go through it. The pain became a part of me. But when it’s been 9 months without any pain, you realize how fast you forget how it feels. And I was certain of 1 thing, I didn’t want to feel pain. The moment they came it was something I never remember feeling. There was nothing… no pain at all. I had the classic blotted lower belly but nothing more! I can’t explain the relief I felt, how happy I felt. For once since I’m 11, I did not need medication. I couldn’t stop thinking: my pain was real, the pain was not normal and no doctor or anyone will ever make me believe again that pain is normal.

That’s when it happened… the anger left me. I felt positive again, I felt like myself again. Endometriosis is such a difficult disease to understand, you can’t see it so I guess my brain never really accepted that I had it in the first place. But today, realizing that the surgery did take away the pain and wasn’t done for anything is a relief. I know, it’s not over and that the healing journey will continue and that I might have bad days again but today I feel like a weight was lifted off my whole body and mind, and I will be able to better deal with it.

Looking back, I underestimated the effect that it would have on me, I underestimated my body and its healing process. I must admit Being impatient didn’t help either. Also, every story is different, because each body is different and I should not have tried desperately to find someone with the same story. I just needed to be kind to myself. Now I know.

Again, It’s not over, but for the moment it’s time to set it aside, either way, there is nothing I can control about it. I need to trust my body.

With love,

Brenda

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