10 things I know about having endo (part 2)

Theme song for tonight's blog: Satsang – Remember Jah. I've been taking such comfort in this lately.

I'm writing this story backwards.

I started it with an explanation of the last 10 years of trying to get on top of endometriosis and the symptoms, but I couldn't bring myself to finish and post it.

It's hard to write about something like that without it bringing up painful memories and thoughts that I'm just not in the mood for at the moment.

I can't tell my full story of living with endometriosis without talking about some physical and emotional trauma that I don't feel like reliving right now. Soon.

Writing about the painful stuff usually feels good to me, it's like tearing off a band-aid, sharp pain leading to relief from that niggling itching that's been in the back of your mind.

But right now I'm doing good. Dare I say it, possibly great. I've had a recent recurrence of some pelvic pain, but while it makes me nervous, it's not getting into my head and getting me down so I don't want to focus on it.

I'll go with the constructive stuff now.

Since late last year I've stopped all medical treatment for endometriosis – no hormones, no hormone blockers, no IUD, nothing. I then developed some rather nasty bleeding ovarian cysts, spent a week in hospital with those, came out for two weeks on morphine to get through to the first surgical appointment my specialist could get me in for. After that surgery (my 7th, in 9 years) I spent another week using the painkillers to get back on my feet, then cut them out and went 100% plant based, back to treating endo with supplements and alternative therapies. I reached feeling the best I have in years, then relaxed a little.

In short – I went from that girl above on the left, to that one on the right, within a couple of months. And I'm not faking feeling that good. Current flare-up aside, I'm feeling better than I have in years. No mean feat if I do say so myself.

And given that it's something I have done at least once a year since I was 18, usually 3 or 4 times given the extent of the flare-up I figure maybe I can share something that might be helpful. Of course that's not the full story, and I'd like to tell you that, the ups and downs, in the hopes that at least one other person finds comfort in it.

When I feel up to it I'll share the story of those 10 years. But for now I hope I can just offer some help, or at least understanding, to others in the same position.

I do not know everything, but here's 10 things I do know about 10 years of fighting endo:

Please keep in mind that I am not a doctor and cannot give you medical advice. All I can do is tell you about my experience and what I learned. With that in mind, take my first point with a grain of salt (and hopefully a laugh…)

1.


First and foremost: Fuck what everyone else says. Fuck what your doctor says, fuck what your friends say, fuck what the internet says, you can even fuck what I’m going to say. The only person who truly knows your body is you.  If you truly believe something is wrong, or isn’t working for you, then trust that instinct. Try a different doctor, do your research, insist on more tests. Don’t get me wrong. Doctors are incredible people who have done a lot of work and study to get where they are and we are lucky to have them.

But the reality is this. Not all doctors are endometriosis experts. Not all gynecologists are endometriosis specialists! Not all treatments suit one person. Not all diseases present themselves in the same way. You need to find someone you trust to treat you, but in order to do that you’ll need to trust yourself enough to advocate for yourself.
Find the right doctor and treatment style.

Given that endometriosis is not a well-understood disease, it stands to reason that there are not many people who can treat it well. Find your local support system (in NZ it’s Endometriosis New Zealand and they’re fabulous) and ask for recommendations. Do your research. I can’t tell you what to do or who to see, I am not a doctor and nothing can subsititute the years and years of learning and research a good specialist does. I can just tell you my experience and hope you learn from it. Michael East has been my surgeon for my last two ops and he’s changed my life with excision surgery.  I learned the difference between ablation and excision (I didn’t even know there were different methods!), and I found someone who practices advanced laparoscopic excision surgery. They’re few and far between, but from what I’ve researched I believe it’s the current gold-standard of care. Above and beyond almost anything else EXCISION surgery has changed my life. I'm putting it in all caps and bold there. That's how big it is.
 

2.


If you don’t have health insurance yet, and you think you have endometriosis, GET IT NOW. Health insurance has saved me. My parents work in insurance and have always been advocates for the importance of it and I thank the universe for that. I wouldn’t have been able to get the level of treatment I have with the speed that I have if I didn’t have insurance cover. We joke that my uterus should be gold-plated by now with the amount of money that’s been spent on it – money I didn’t have to front up. So go. Now. Call someone. I’ll wait.
 

3.


Watch the film Endo What? And read Endometriosis and Pelvic Pain by Dr Susan Evans and Deborah Bush (of Endometriosis NZ.) Join ENZ while you're at it and check out their resources. Finding these two resources was the turning point in my life and health. I can’t stress enough how anyone suffering from endo, who knows someone with endo, or is working in education and womens health services should have seen these. Check it out here: http://www.nzendo.org.nz/how-we-help/resources

That’s the ovary-admin out of the way.

(Humour is key. Humour is always key.)

4.


Take a good hard look at your diet, suck it up, and go plant-based. Or at least partially plant-based. Endometriosis is an inflammatory disease. Certain foods promote inflammation in your body, and certain ones reduce it. Therefore, common sense says that your diet should work to reduce inflammation. Unfortunately dairy, sugar, and gluten are all in the inflammatory category. (Oh god pizza. I miss you pizza. I love you pizza. Why you so bad for my uterus?) I can’t sit here on a high horse and tell you to never eat any dairy or gluten or sugar ever and only eat organic on pain of death and (worse) triggering horrific endo cramps that make you want to spew your guts out. Because I eat crap sometimes. But it’s once in a while, and it’s usually balanced out. If I eat food with these in it I start getting crampy and sore, without fail.

So I look at it this way – What am I going to put in my body today that will nourish it and fuel my fight? Once I’m full of plants, if I really want something else (oh hey dairy-free dark chocolate) I’ll have it. If you’re in doubt, watch the film-of-the-moment WTH (What the Health?), read The China Study, or check out any of the hundreds of bloggers who have healed themselves using a plant-based diet (Deliciously Ella's a good one.)

5.


Helllloooo supplements. Supplements are my favourite thing. I could spend all day in a health food store shopping. I'll do a whole post on these, but in the meantime my two cure-all, can't live without, changed my life supplements are Ethical Nutrients Mega Magnesium (helps with cramping and muscle pain) and Clinicians Evening Primrose Oil (essential fatty acids reduce inflammation in the body), and a good probiotic – I'm now using The Perfect Blend Probiotic because I just got SO OVER taking pills and as a powder I can add it to my morning smoothies. We've all heard the benefits for gut health towards everything else in our bodies, particularly IBS symptoms for endo sufferers. There's a fairly large argument for it helping depression sufferers too. This one is clean, high quality, vegan & no nasties. I'm immediately in. I have a list of about 7 other things I take religiously but these three are my life-savers.

I'm also ridiculously tea obsessed, and Artemis Health have some amazing ones, not least their PMT Ease that has helped so much with balancing my hormones out. I also drink their Digestive Ease when my IBS symptoms play up, and the Deep Sleep religiously before bed, combined with my beloved Storm & India evening detox.

6.


Yoga. I'm sorry crossfit, I miss you but showing you and other high intensity workouts the door was the best thing I've ever done for my body.

Don't get me wrong, if you're perfectly healthy then I'm a huge advocate for crossfit.

The problem comes when your body is already fighting a good amount of inflammation and scar tissue. A lot of jumping around and throwing myself around really just aggravated it.
Instead now I'm focusing on restorative, integrative exercise. Not only does it soothe the physical body, it calms and restores the adrenal system. Mostly yoga, with some cardio thrown in – nothing high impact, biking etc.

I think people misunderstand often when we say yoga. It's not just stretching in cute lululemon clothes.

To be fair, there's a fair amount of stretching in cute lululemon clothes.

Some classes are hardcore, and remind me I am not that fit and my ego does not belong on the mat. If you want to be sore after a workout (the good, muscle kind) you can definitely get there through yoga. But most importantly on the endo side, yoga releases through my hamstrings, hips, groin, pelvis and butt. All those areas carry so much tension from holding in the pain, and yoga has been the key to working through them for years.

It's also about more than the physical side, and yoga is the path to the self, through the self (words courtesy of incredible yoga teacher. If you're in Auckland and looking for a class I couldn't recommend Urban Ashram more highly.) Some classes are less confronting physically, but more confronting mentally. Yin brings me face-to-face with myself unfailingly.

(I've actually lost a fair amount of weight doing this, though a certain amount of credit has to be given to the appetite inhibiting effects of severe pain and high doses of morphine.)

7.


Meditation and journaling. I'm putting this one on the list even though it's not a direct treatment for endometriosis.

Let's face it, constant pain, gnarly periods, hormonal imbalances and a niggling worry in the back of your mind about fertility can seriously fuck with your mind. Even if you were seriously sane to begin with (not a trait I can claim), it's enough to drive you batty.

Meditation and journaling bring me back to earth and help me find my positivity again. My random blend of beliefs and spirituality is a constant comfort. I'm currently using 3 journals – one to check in with how my body is, one for free form writing about what's on my brain, and one that's a weekly guided journal focussed on positivity. There's something to be said for getting all the junk out of your head and on paper.

I have to mention here, while kind of on the topic, that counselling can be hugely beneficial when struggling with any chronic illness. I don't talk about it a lot as it's something I really struggle to maintain, but when I do force myself to go it's invaluable. Confronting, but invaluable.

8.


Acupuncture & acupressure. All hail the Shakti mat! I started having acupuncture for my sinuses, and moved on to using it for anxiety, depression and eventually hormone balancing and pain relief. The concept of stimulating areas in your body as a trigger to heal itself really appeals to me. You are all you need, your body already has what it needs and was born knowing what it needs to do. Sometimes it just needs a little reminder of what it's forgotten in the crazy rush that is modern life.

The Shakti mat works similarly, but without the needles. Lying on it on my stomach seriously reduces cramps, and on my back helps with the lower back pain caused by endo growing near the spine. It also helps me sleep, so bonus!


There's me with my belly on all the tiny little spikey dots.

9.


Pelvic physiotherapy & massage. This one is a bit weird, and if you've never had your pelvic floor released it's going to feel strange AF. I struggled a bit with this thanks to some lingering rape trauma but it was so helpful when I could manage it.

We don't realise how much tension we carry in our pelvis, when our bodies are stuck in an ongoing pain spasm. Your muscles cramp, then clench, then get so used to being tight that they forget how to relax. Like I said, yoga is great for this, but pelvic physiotherapy can get really deep and manually release the tension. In a non-sexual way. Really gotta stress that part 😂

Massage does the same thing from a external level. Massage through my hips and stomach often relieves cramps that are just beginning. Not recommended for hardcore full endo flare-up pain though. If you can go for a massage then you're a braver woman than I am.

Extra points given for massage with magnesium oil – extra muscle relaxation.

I spray Elektra Magnesium Oil Spritz directly on my stomach and massage it in for pretty rapid pain relief.

Anything you can do to relax those tense muscles is key.

10.


When all else fails – cleanse. A couple of days on a smoothie cleanse always helps me rebalance my body. I'm not a huge believer in the concept of detoxing, it's more just a focus on taking the pressure off your digestive system for a couple of days, while simultaneously pumping as many nutrients in as you can. It really helps if you have IBS symptoms along with the endo symptoms too.
I've taken to doing Greenleaf Organics' one rather than making my own, because they're top quality and so much easier.

I hope something here helps you. If you have any questions ask away.

I'll be doing more indepth writing on all the things that help, plus posting my endo story in the near future, so click below to subscribe to blog posts, or follow me on insta here ❤️

Love and sparkles
N 🦄

 

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