Endometriosis 1 Year On From Diagnosis

I walked home from the doctor’s office late on a Tuesday afternoon. My second ultrasound scan pictures were crammed in my bag and my stomach was bloated and uncomfortable after the doctor had confidently jabbed my bad ovary with the scanner.

Does this hurt?” She’d asked me. I’d winced enough that she didn’t need a verbal answer.

When I reached the door of the flat I’d rented with my ex, I had to take a deep breath. While he was on holiday with his new girlfriend, I was living there with all his stuff and even though I found that out later on, I still had to brace myself whenever I came home. We’d broken up just a month before and he was the only person I’d told about what was happening. I’d neglected to tell my mum and my friends, quietly avoiding talking to them when my period was due out of fear that saying it out loud would make it more real. Or, perhaps, that they wouldn’t see my pain and I’d feel stupid for complaining.

Sitting there alone after the appointment, in our flat that I’d been so excited about just a few months before, was the loneliest I’ve ever felt in my life.

I’ve written 10 drafts of this post and each time it gets bigger and messier than before. I want to say so much but looking back still feels painful, yet looking forward with only hope feels insincere.

It’s now been over a year since I was diagnosed with endometriosis. Or, as a doctor would insist on differentiating, I was diagnosed with an ovarian cyst consistent with endometriosis. It would be another 9 months until I could get the surgery that confirmed the diagnosis proper.

It’s still hard to talk about. When I started this blog it was because I’d had problems with my periods for over half my life and I wanted to talk about it honestly. But saying out loud or writing on the page what’s happened in the last few years is still so complicated and painful that I chicken out every time.

Endometriosis has affected every part of my life. It’s not just chronic pain or ‘bad periods’; the mood swings, anxiety, bloating, body dysmorphia, and all-encompassing nausea and fatigue that my period cause have been overwhelming. I’ve missed my own birthday (twice), ruined holidays, lost relationships, added stress, and at my worst moments felt in every part of my body that I wanted to give up on life – because if this is how I’m going to feel forever, why would I want to stay?

It took me more than a decade to receive a diagnosis and that’s not uncommon. I’ve had my pain and other symptoms dismissed countless times and, for full disclosure, I turned to private healthcare during the pandemic to get help. This is the reason I was able to access surgery within a year of diagnosis and it’s the reason I now get to heal and move past the pain.

I’m so incredibly grateful that I found a doctor that would put me forward for surgery. They removed my cyst, my endo, my appendix and performed ovarian drilling and it’s changed my life so much already. For the first time in my life my period has been regular and the pain manageable. In the last few months, my anxiety has improved no end and I genuinely feel like I’m doing better than ever, which is so exciting considering how much of my life has been ruled by this disease.

Yet, I also need to say that this year has been fucking hard. I’ve spent so much time trying to mask and hide my pain from other people, it’s why I’ve been so hesitant writing this post, but it’s worth saying and saying loud. I’m learning to lean in and share more of this shit with people because the problem with hiding your pain is that it makes it easy for other people to assume it’s not there. This is something that, as I know first-hand, can leave you feeling incredibly isolated and lonely.

I still have a way to go though, I’m just at the beginning of the journey out. My body is still healing and finding it’s rhythm and I’m still learning how to look after myself again. Still, I can say that for the first time in a long time I feel good and that’s all that I wanted from the last year – just to feel good in body again.

So, if you’re facing an endometriosis diagnosis and feeling scared, lonely, overwhelmed, relieved, lost, confused or all of the above all at once. Please don’t give up. I believe you. I see your pain. I know there are doctors out there that can help you. Please know that it can get better and hold onto that hope – it’s what’s gotten me through this last year and I want to pass it on.

❤️

Here are some of the things that I’ve learned in the last year that I want to share in the hope it might help someone else:

  1. Recovery takes time: I thought I’d get up from surgery and everything would be fantastic. Although physically I did recover surprisingly fast, mentally and emotionally it’s been a real struggle. This is one of the biggest changes I’ve ever been through and there are still a lot of unknowns. My body needs time to heal and find it’s rhythm and that means being patient. Be generous in your recovery timeline and celebrate the wins.
  2. Follow your body: This one I don’t always do, listen to yourself. If you’re tired, rest. If you have pain, stop. If you ache, stretch, breath, take a bath. Be kind to yourself, always. You’ll never regret listening to your body and giving it what it needs.
  3. Keep talking: My mind gets stuck sometimes, playing over everything that’s happened, all the things I’ve felt in the past, and all my worries about the future. It makes me feel like a burden to have to keep telling people about it, but you have to trust in people and share some of your feelings. This year, talking to my mum has helped me more than anything. I’ve never trusted so fully that someone could love me completely unconditionally and forever. That’s wonderful and precious. Whether it’s family, friends or a therapist, keep talking. You’ll be surprised how much better it feels.
  4. Find what feels good: I write, I journal, I go for long walks and put on my favourite music. Whatever it is, do it as much as possible. My phone is full of pictures of clouds and sprawling fields from my walks. They give me space to think and let my mind wander to new topics, letting go of the old ones. Let go of any ideas you have about what you should be doing and do the things that make you feel ok.
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