Living with Endometriosis: How I’m Befriending My Chronic Illness

on March 7, 2019

It’s March, which is Endometriosis Awareness month (to those of you who haven’t already been bombarded by my Instagram posts). I figured, there’s no better way for me to kick off this month than with an update on how I’m living with Endometriosis. I have probably been living with Endometriosis my whole life, but it’s been five months since my official diagnosis via laparoscopy surgery. The last time you heard from me, I was coming to terms with this chronic illness and what it would mean for the rest of my life. So the question is… how am I doing now?

If you want to know more about Endometriosis and my diagnosis, read this post.

Living with Endometriosis is incredibly challenging. This is one woman's story of life post diagnosis. #endometriosis #endometriosisawareness

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Living with Endometriosis: How am I doing now?

Some people have asked me how I’m doing now. The reality is a little complicated — as seems to be the case for anyone living with Endometriosis, or any chronic illness.

I felt really good after my surgery in October — not only did I finally have a diagnosis for my years of symptoms, but the surgeon supposedly removed the endometriosis. I was apprehensive, but optimistic.

From about October-December my symptoms were at bay. Meaning, I was nearly pain-free, my digestive system was regular, I had energy back. Even though I felt great, it was really a mindf*ck (pardon the expression but how else do I put it?), because by feeling good… I realized how bad it had been before. My digestive symptoms and in particular my pain had become so normalized to me, that I didn’t even know how bad they were until they were gone. Years of health professionals not believing in me really had its effect — I realized how much I’d internalized their perception of me, and how wrong that was. Reading Abby Norman’s  had me shouting YES GIRL and having a million epiphanies about how the medical system dismisses female pain.

Anyway, around the holidays my pain and digestive symptoms (primarily, constipation and bloating, otherwise known as “endo belly”) started returning. I had been following the candida diet after my surgery, but quit around the holidays (#treats) so I thought maybe the relapse was down to that…

Enter January and I’d cleaned up my diet but my symptoms were only getting worse. More pain. More constipation. More bloating. More bleeding. I felt myself spiraling into an all too familiar frustration. The thing with Endometriosis is it’s an invisible illness (on the outside). I would look at my abdomen and just wonder… what’s going on in there? Am I internally bleeding? Are my intestines fusing together again? Is it back? It was easy to become fatalistic.

During this time until present, I tried a lot of different relief methods, which I’ll discuss below. Most things helped, but nothing was “curing” me. Which I know is not a realistic expectation of living with Endometriosis, but it still felt frustrating. Having a chronic illness is like living on a rollercoaster with your eyes closed. You don’t know how, when, or why you’ll be plummeting to earth one day, then steadily moving along the next. Trying to control it makes your struggle that much worse — the best thing you can do is embrace the ride. Even if you’re terrified of roller coasters, like me 🙂

Related: My Bowel Endometriosis Story: How I Finally Got a Diagnosis

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DEAR #ENDOMETRIOSIS – ⠀ ⠀ You flipped my life upside down. I’m the third (known) generation woman in my family with you, and it STILL took until age 25 for diagnosis – which btw, I had to be cut open for. Thanks for that. You’ve impacted not only my health, but my travels, my relationships, where I live, my career, what I eat, how I spend my money, my VALUES. You’ve caused me immense pain and emotional distress, distrust in the medical system and myself.⠀ ⠀ Endometriosis…..THANK YOU. Thank you for showing me how STRONG I am, for giving me a calling to be a patient advocate for endo friends everywhere. To encourage others to live #wellandwidely DESPITE disease. To live by example, as hard as it is.⠀ ⠀ Endometriosis….. come and get it 👊🏻👊🏼👊🏽👊🏾👊🏿⠀ ⠀ Love Sarah⠀ ⠀ PS it’s #endometriosisawareness month y’all. I will be posting about endo on my blog all month. But I’d LOVE your topic requests. What do YOU want to know about endo life???⠀

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Living with Endometriosis: What is helping?

Yes, living with Endometriosis has been a struggle. And although the symptoms have come back, they are not as bad as before my October laparoscopy. Just having a diagnosis of Endometriosis has given me so much power in approaching the appropriate treatment methods. Below I’ll discuss some of the things getting me through my days.

Please note that I am not a medical professional and this is not medical advice… it is only representative of my personal experience. Also note that Endometriosis is a chronic illness with no known cure. None of these things are or are meant to be cures. They just make life more livable. Whether you have Endometriosis or not I hope you can get some wellness insight from my experience!

Pelvic Physical Therapy

Probably the #1 most important thing in my living with Endometriosis is Pelvic Physical Therapy. I go almost weekly. I feel so aligned with my Pelvic Physical Therapist in a way that has been very rare in my experience with health professionals. There seems to be a lot of mystery surrounding PPT, so I want to be clear. During therapy she spends time educating me about my pain physiology, discussing potential triggers from the previous week, performing exercises, and doing internal and external manual techniques.  PPT is very intense (usually I’m knocked out for the remainder of the day) but it is helpful like NOTHING else I have ever experienced.

I could not recommend PPT more to anyone living with endometriosis, pelvic prolapse, pelvic, dysfunction, pelvic pain, etc.

Calming My Nervous System

Unsurprisingly, my symptoms are exacerbated by stress. Through PPT I’ve come to realize I’m living in a state of constant ‘fight or flight’ AKA my sympathetic nervous system is in overdrive. Some things that are helping me regain balance:

  • Cutting out caffeine, mostly. I now have lemon water at night and decaf coffee in the morning.
  • Meditation – I use the free sessions on the Calm and Headspace apps, usually before bed time. I’d like to do more throughout the day, though!
  • Emotional Freedom Technique – tapping the pressure points below my collarbones.
  • Diaphragmatic breathing.
  • Colonic massage.

Therapy/Counseling

I started going to a therapist in December after asking my doctor for a referral. It got to the point that I was crying after every doctor appointment, feeling so hopeless.  I sought therapy to cope with living with Endometriosis, but I’ve found its usefulness extends far beyond my disease. It’s a time for me to reflect, assess, and motivate myself.

When I lived in England, I was in therapy for a traumatic bereavement. At the time, I considered therapy to be a very ‘situational’ thing. But the truth is ANYONE can benefit from therapy, whether something ‘bad’ has happened to you, you have a diagnosed mental health issue, or not. Life in general is just hard, and therapy helps us cope with that.

Natural Pain Relief

A lot of us living with Endometriosis struggle with pain relief. OTC painkillers aren’t always effective, and for obvious reasons we should try to avoid opioids. My OTC painkiller drug of choice is – I find this helps immensely with migraines but not so much with abdominal pain. I’ve also found that painkiller drugs exacerbate my digestive symptoms (constipation) so it’s kind of a worst of both worlds scenario.

I’ve turned to more natural pain relief methods and this is what I found:

  • DoTerra Deep Blue Lotion A lotion made of essential oils, smells amazing and has an ‘icy hot’ kind of sensation. You go tingly and a bit numb. It’s great for muscular pain, and I use it on my abdomen too. I love this and really recommend it, although you do have to continually reapply.
  • All About Annie Infrared Heat Belt – Dudes, I ordered this infrared heat belt all the way from frickin New Zealand (which was kinda pricy but heads up she’s having sales right now!). This thing is crazy… it uses magnetic infrared technology AKA uses your body’s natural heat to heat up. No more reheating rice bags in the microwave or needing an outlet. Because I travel so much this thing is IDEAL. Plus it fits discreetly under clothing so you can wear it out in public, on transport, to WORK, no problem!  Oh and Annie is a fellow Endo Warrior, who I love to support!
  • CBD Balms – I’m listing this one although I haven’t had the chance to try any out myself yet. But I’ve heard people raving about CBD, particularly Alni CBD which is produced by another Endo Warrior. I’d love to try it sometime.

Instagram Community

Emotional support is SO important with a chronic illness. There is no in person support group in my area. I turned to Instagram, as you do, before my surgery and found a small but thriving community of Endo Warriors there. Since then I’ve joined the conversation and “met” some amazing people living with Endometriosis. I actually don’t know what I’d do without it.

Changing my Diet

I thought I had a ‘clean’ diet, but man, Endo takes it to a new level. There is no standard recommendation for an Endometriosis diet – a little bit frustrating as obviously with Celiac disease you go gluten free and that’s that (simplistically). For Endo there is evidence that diet can make a difference in symptoms (with one study showing 75% of participants had significant symptom improvement after 12 months of cutting out gluten). Because it is a chronic inflammatory condition, many practitioners recommend an anti-inflammatory diet (cutting out things like gluten, dairy, sugar, alcohol, night shades). Ultimately though, an Endo diet can be very individual.

I saw a clinical nutritionist back in the summer, who tested me for food intolerances and candida yeast overgrowth. Of course I tested positive for both which led to a long elimination diet – which I subsequently quit around the holidays. Elimination diets are tough AF and candida diets especially as you eliminate ALL sugar (even natural sugars in fruit, etc). My symptoms were getting so bad that I decided to start the candida/elimination diet again in February. I’ve been journaling my symptoms with The Food Diary Co symptom tracker and that’s really been a game changer in terms of identifying triggers. I’m still in the midst of this but I will be writing a completely separate post on eating for Endo, including a giveaway of the Food Diary Co tracker, later this month. Stay tuned and comment with any specific Endo diet questions!

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You hear a lot these days about finding your 'why'…when I first started this company my 'why' was entirely personal – I needed a food diary like this, and it just didn't exist. My own personal wants and pains and frustrations were what pushed me to create our Food Diary. ⠀ ⠀ But now, years later, it's you lot that keep me going. The diary has done its job for me, and keeps doing its job when I need it – I live a very happy, very healthy life, am full of beans on a regular basis and, when I get sick, 99% of the time I know why and how to help myself get better. ⠀ ⠀ So now it's your comments and your diary stories, your Insta tags and your words of feedback that keep me motivated – to make sure more people can get the Food Diary they need to get the health they want. Thank you thank you thank you! 💓💓💓⠀ ⠀ º⠀ º⠀ º⠀ #irritablebowelsyndrome #ibs #ibsawareness #lowfodmap #fodmapfriendly #fodmaps #fodmapdiet #pcosdiet #sibodiet #aipdiet #aipprotocol #fooddiary #thefooddiaryco #symptomtracker #foodjournal #fodmapliving #coeliac #glutenfree #glutenintolerant #foodintolerances #healthiswealth🌟 #takingcareofme❤️

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Getting Back to Exercise… Slowly

Someone asked me on Instagram about getting back into exercise post-surgery. It’s hard! At five months post-op, only now do I feel like I can comfortably return to my exercise routine. Of course there were other factors at play in this timeline such as some travel, the holidays, and getting the flu for a month… but still! It’s a long process and the first step is to acknowledge that and let go of any guilt as your body heals. For a long time post-op I would get this horrible internal ‘tugging’ sensation when I tried to walk or run. Outwardly my incisions had healed, but clearly internally my body was still recovering from surgery. I listened and rested and I think that has helped tremendously in getting me to where I am now.

I am currently training for Everest Base Camp – a trek in Nepal that goes to 15,000+ feet in altitude. I’m able to run for an hour, lift weights, go to yoga, do stairclimbs, etc. Mostly exercise helps my symptoms, although sometimes it does increase pain and when it does I STOP immediately. I realize that physically I am able to do a lot more right now than many people with Endo can. So I recognize that as a blessing, but also know that it is due in some part to learning how to listen to my body.

In the depths of a flare last year I was training for a half marathon – pushing myself to run 10 miles in the freezing weather whilst 12 days constipated with stabbing pelvic pain on my 30th day of bleeding. I thought I was teaching myself to be ‘mentally tough’ but actually I was making it harder for my body to heal. Living with Endometriosis it often feels like we have to push through our pain to live… but sometimes listening and RESTING is equally important. Try to find your own balance.

Changing my Mindset

Hope is a tricky thing. Post-diagnosis, I clung so hard to my hope. I hoped my symptoms wouldn’t return. I hoped I’d be cured. Then, I’d inevitably have a bad day. My hopes were dashed and it made an ‘average’ bad day feel SO much worse. Over the last few weeks, I’ve tried to transition to a more accepting mindset. I have a chronic illness and some days will be better than others. I love to travel and I know this exacerbates my symptoms. But it doesn’t kill me, right? I can survive it and I have tools and I know THIS TOO SHALL PASS. I still have hope deep down that someday there will be a cure, I’ll get better at managing symptoms, etc… but on a day to day level I take symptoms as they come (or try to, at least).

Living with Endometriosis: What are the next steps?

Going forward, there are a few things I am planning on doing.

My primary goal at present is to see an Endometriosis specialist. When I had my laparoscopy, I only had five days notice. I didn’t get a chance to really research into the procedure. Turns out, my general gynecologist performed an ablation surgery – an outdated procedure where the endometriosis and adhesions are burned off. This is widely used but lacks an evidence base, as the endometriosis regrows in most people. The gold standard of care is excision surgery, which cuts out the lesions. Think of it like weeding… if you just cut off the top of a weed it will grow back. BUT if you pull it out by the roots (excision) you could be set for life. The problem is excision is a very specialist technique that not many gynecologists can perform. Hence being on a waiting list to see the endometriosis specialists at University of Michigan to discuss my options!

Other than that I am continuing with all my techniques mentioned above! I am learning more about living with Endometriosis every day. I’m listening to my support network, tuning into my own emotions and symptoms, and trying to live my life. I’m going traveling at the end of this month which will be the first time in over a year that I’ll have had more than two weeks ‘off’ of doctors and health appointments. That’s scary to me but I’m READY.

I’m going to be living with Endometriosis for the rest of my life, just as my mother and grandmother (and so many other strong people) before me. It’s going to be tough but I will continue speaking and advocating about it no matter what.

Happy Endometriosis Awareness month, y’all. As always, any questions or comments you can post below or email me at sarah@endlessdistances.com.

Sarah xx

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