Endometriosis and chronic illnesses in general are pretty crappy to deal with, but they also teach us a lot of things that we have to enforce in our lives to improve it. If you’re new to dealing with endometriosis, PCOS, adenomyosis or in fact any chronic condition then these learnings can help give you direction in dealing with your challenges…
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1. Diet is a Gamer-Changer
Who wouldn’t want reduced pain? Right?
In my entire 25 years of having endometriosis, no doctor has ever openly and willingly told me how certain types of food tend to aggravate the endometriosis (adenomyosis, PCOS, MCAS and the Ehlers-Danlos syndrome) I have.
I was only told about hormones, getting some tests, taking some pills, gently stretching, popping in pain killers and taking injections…
There was no mention of the benefits of eating according to your condition – which means, that you could be eating all the right foods but it may not be right for your medical condition.
Let me give you an example – gluten, which is found in wheat, barley, rye, self-raising flour all tend to cause heaviness, bloating and an increase in pain in those who have various conditions including endometriosis.
Therefore, although for some whole wheat brown bread or rye bread may be a healthy option, it isn’t for me.
Many years ago I happened to stumble upon blog posts written on diet by various people who suffer from endometriosis and that got me intrigued and I always wondered why this information isn’t made standard by doctors for their patients.
It was only recently that I got to know that for many doctors, nutrition as a subject makes up a very small component of their medical education – but then this leads me to ask – aren’t they the least bit curious about food – the very fuel that runs the body?
Anyways… I got to learn more about the foods which work for my conditions and very gradually I started incorporating changes to my diet – I made these changes very slowly so that I didn’t shock my system and create extreme withdrawals.
For more details on the six diet changes I made, I’s suggest to read the more detailed blog post of mine here:
But overall, a change in diet, eliminating many forms of food that increase pain and create havoc amongst my hormones, getting involved in the kitchen, being more vigilant while eating out and looking to eat fresher foods all made me feel lighter, less bloated, improved my energy levels and contributed in reducing my pains.
It genuinely does not take a lot to understand what could help us – we just need to educate ourselves.
Please note: I’m not a nutritionist or a medical professional – please always consult a nutritionist before making any changes to your diet.
My Endometriosis Diet Friendly – Chia Seed Chocolate Pudding Recipe…
View this post on Instagram
2. Exercise Isn’t (just) About Making You Look Good
It’s true for me, exercise isn’t about me attempting to look good by taking on a rigorous workout plan so that I can fit into that perfect dress or be able to button up my jeans.
I soon learnt that exercise was going to be none of that for me, instead my goal with exercise was to help support my diet and help work towards a stronger and healthier body.
Exercise does not just produce happy hormones, but it also improves bone density (which can reduce if you have endometriosis), reduces stress, improves blood circulation and helps build immunity – I wanted all of these benefits and all the others that I haven’t mentioned (since the list is quite long)!
But most importantly, exercise has to be done consistently and for that to be possible, you need to be able to understand your body and your medical conditions.
This is where, just like my diet, the type of exercises I was going to do had to be customised for me otherwise I could end up doing more harm than good.
To make sure I didn’t mess this up – I spoke to my doctors and my physiotherapist who explained what areas I need to focus on, what things I need to be cautious of and what we’re looking to achieve.
Within a couple of months (after tweaking my exercises along the way), I was able to see the benefits of this – my spasms were more bearable and my pre-menstrual pains reduced as well.
Unfortunately whenever I would fall off my routine even for a couple of weeks because of an increase in fibromyalgia pain, or work commitments and even when I got reallly sick from Ehlers-Danlos syndrome I would start losing strength very quickly and my pains came back with more intensity because of the increased weakness.
This meant that for me my exercise routine would be crucial in helping me function but now post my endometriosis excision surgery, I have had to rest more in order to heal internally.
As that happens, I will work towards being consistent again.
In case you’re wondering what exercises I do – I will write a detailed post about it but to get you started I have mentioned this in some detail when I wrote about how to prepare for endometriosis excision surgery:
3. Pain Management Is A Thing
I was 9 when my knees started hurting and 11 when my periods began.
Relieving pain for the knees was all about applying some ointment and for period pain I was told to just take pain killers.
For many years I was limited to these two options – never were alternate pain management options explained.
But now I can confidently say that no one should ever rely on just one type of a pain management strategy or only rely on popping pills.
I’ve been given a pain killer which even taking half of makes me slur while talking and keeps me drowsy for 48 hours – and yet I was expected to take that medicine once every day and slowly increase it to one pill a day.
I knew I could not live life like this – I really did not wish to be constantly drowsy and slurring away. I needed to seek other options and I did.
What I realised was that by just doing one thing, I wasn’t going to be able to reduce my pains, instead I needed to work on a combination of options which would become a part of my routine.
This doesn’t mean I was able to stop taking regular pain-killers, but it did mean that I didn’t take as many and I didn’t have to take the one that made me slur!
Here’s a detailed article on my pain management options:
Please remember to always consult your doctor before taking yourself off any medication, making any changes to your diet and re-working your pain management options.
4. Acceptance Improved My Mental & Physical Health
It’s not easy to deal with a body that doesn’t function the way it’s supposed to. It’s not easy to always be in pain and maintain a healthy mental state.
I would see my body separately to me – as if it was against me – as if we were on two opposing sides failing to agree with each other, but the truth is, my body needed me to understand that it wasn’t troubling me deliberately – it was helpless and it needed me to understand it.
After realising this, I started working on understanding my body which lead to changes in my diet, a new exercise plan and taking time for other forms of self-care like meditation and skin & hair care.
But all this was only possible when I truly started accepting my situation and making conscious changes to my life through thought and action making me feel more at peace with myself.
Relevant Read:
5. Menstrual Hygiene Makes You Feel Good
Menstrual products can cause irritation and rashes in the vaginal area.
And if like me, you have heavy periods that go on for longer than a week at times, you will find that regular sanitary pads, tampons and other products may cause more harm than good.
So, what do I mean by ‘regular’? I mean products that are not organic or natural.
In this journey of living with endometriosis I soon realised that organic options were the only way for me if I am to reduce or eliminate rashes and the possibility of more complications caused by the chemicals in these products.
Also, I was explained by my doctor that using regular body soap to wash myself with would throw off the PH balance of the vagina – therefore, I switched to using an intimate wash. Although the vagina is self-cleansing but with the sort of heavy bleeding I was going through, I felt comfortable adding the intimate wash to my menstrual hygiene routine.
If you wish to know more about menstrual hygiene products and the healthier options we have out there then I would suggest these two articles that explain everything in detail:
6. Being Open to Not be Misunderstood
I was always open to my family and friends about my health woes – especially my challenges with endometriosis, PCOS and adenomyosis… Ehlers-Danlos came much later into the picture.
By being open about it, everyone has been more understanding about my life and the challenges I face because of it.
Thankfully I didn’t get pity, I got support.
I believe that if you hide something or don’t express things to the fullest, it’s then unfair to expect other people to read our minds, understand us and be there for us.
I found that this changed two things for me – it made others be open and straight-up with me and secondly the right people stuck around because having someone who is always unwell can be tough – not everyone can take it.
It reduced toxicity from my life and helped me live a cleaner life mentally with people who genuinely want to be around me.
Relevant Reading:
- My Thoughts & Tips: Chronic Illness and Relationships
- Tips: Dating Someone with a Chronic Illness (like Endometriosis)
7. Doctor’s Don’t Know Everything
This is a universal truth – doctors do not know everything.
It’s foolish for us to believe that when we go see a doctor, that the doctor is always going listen to us and would even know what’s wrong with us.
It takes over seven years for a patient to be diagnosed with endometriosis and that average says a lot. It says that many women’s pains are not just dismissed but they’re also not well researched.
I learnt that my body is telling me the truth so if a doctor does not believe me or understands me then I need to find another doctor rather than being dismissed with sentences like “it’s all in your head”, “you’re just stressed” or “why don’t you have a child and you’ll be fine”.
There are very few doctors out there who are curious and open enough to tell you that they may not know what’s wrong, but they will either find out or they will put you onto someone who may know.
Thankfully I have met a couple of them and they’re all in agreement that doctors do not know everything and that doctors should be willing to keep an open mind and constantly educate themselves rather than not believing their patients.
Relevant reading:
That’s my list so far.
As I keep learning, I will keep adding to my list.
If you have any learnings you’d like to share then please do so in the comments section below – I would love to hear from you.
Thank you for reading and supporting me. 🙂
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Disclaimer: I am not a medical professional. I am a patient and have created this platform to share my experiences. This is all purely informative and in no way am I providing medical advice. Please consult a medical professional.
I”m hanging out on your site tonight and getting to know you better. I really liked this post and learned from it. I also agree that one of the biggest game changers is diet, but doctors don’t tell us this specifically, as you have pointed it. I started reading as much as I could about diet changes over a decade ago and I’ve learned a lot, but I just got it under control in 2018 and that is because I’m really strict. Knowing your trigger foods is so important. Great list so far. I look forward to future updates as you discover more on your journey.
Carrie… that’s so sweet! Thank you for hanging out! 😀
Apparently, as one of my doctors explained to me that diet is a very small part of their education, which is why many doctors aren’t too well versed with how to help their patients through their diets. I have never understood why the very fuel of the human body isn’t an important subject in med-school. I hope that changes (I do realistically doubt that though).
But like you said, knowing your trigger foods is so important and I’ve also found it to be an interesting process of discovery – as our body changes, as we age, as our health fluctuates, our diet then too needs to adapt and we need to stay vigilant.
I hope people read your comment and are inspired to be strict too. Thank you for sharing 🙂
Great tips, applicable to all autoimmune and chronic diseases, too. Diet, sleep and exercise are the big three in life and….stress trumps them all for me, too. And so true that doctors may not know everything. I put all my faith in them but after many botches, I realised I had to speak up for myself, too.
Thank you 🙂
I think if we can get these three basics you’ve referred to in place then it definitely helps the stress levels. It may not be the final answer because stress in itself is a formula that’s constant work-in-progress (at least for me).
Totally agree with all these tips, and many are applicable for a lot of chronic illness conditions. What you say about exercise not just being about how we look is spot-on! It’s most importantly for our physical and mental health 🙂
O’ yes… mental and physical health has to trump over how much emphasis many put on their looks because we may look great but may not feel so and that feeling is the most important thing.
This list gives some clear guidelines that you have found helpful. What I really appreciate is the links to more in-depth posts on each topic. You have shared your wisdom via experience that will help others not to have to go through as long of a journey to figure out how to live well with endometriosis.