Good Morning my fellow Endo sufferers
This is a post about hope. About looking for other options to empower us and to fight back (the best we can) against this debilitating condition. And this is my story.
Background:
Terrible periods from when I first started at 14. The usual story. Heavy, intense pain, days off school due to inability to get out of bed. Put on the pill at 15 to help control symptoms. Continued on pill for many years (still having horrendous periods) having had my first child at 28. Period returned after having eldest but with sharp pain. Was told I may have polycystic ovaries. Was due for tests for this when I fell pregnant with my second child and had him at 30. During c-section, surgeon found numerous adhesions which they thought were linked to my first emergency C-Section. I was in theatre for an additional hour whilst her and another senior surgeon decided to remove some of the adhesions. I now know this was endo. 4 years on from second child, started with terrible pains outwith the time of my period. Sharp, in my left hand side. Was rushed into A& E and admitted. They thought it was kidney stones but nothing showed on the scans. Went back to GP who then mentioned endo. I did my online research and realised that was me! After all these years I had a reason. Had a Laproscopy 2014 which confirmed it. Identified it was on my bowel but would be a complex op with no guarantees. So I decided against it and hoped it would 'go away' (how naive!) Things came to a head last year. My body literally gave up the fight. I had weeks off works as was completely exhausted. Back and froth to doctor (who is lovely) and we ruled out anything else like thyroid etc so underwent lots of blood tests. Any other issues were not identified and we realised it was all down to my endo. She talked through surgical options and then mentioned the holistic approach so perhaps me looking at my mental health (was really struggling at this point) so got an app for that which helped me focus more on the positive. She then told me to concentrate on what was I hoping to achieve and as surgery doesn't guarantee results, I wanted something that I could help myself with. We agreed I would go back after 3-4 months to discuss again and decide a way forward.
Which gets to my message of hope. When you're in pain, fatigued, exhausted, mentally battered, the last thing you want to do is find the time and energy to research your own condition. You just want to get through your day. And then on the days you feel well, lets face it, you don't even want to think about endo, never mind research info about it. But that's what I did. For most of January, I have purchased various books and completed my own research and 4 weeks today is my anniversary of starting my own 'endo diet'. Not a diet to lose weight. A diet which means I am putting the right food in my body to help me as a woman with endo. And in all honesty, it's been amazing. It's still early days but I can feel such a tangible difference. I never knew what a powerful tool we have available to us to help combat the condition. So here's what I have done. (And this is by no means what I feel everyone should do. it's what works for me but it's just a guidance as a start for anyone who wants to start looking into their diet):
- No alcohol
- No diary (I'm now on the coconut milk and vegan cheese!)
- No meat (I do have lots of fish though and I can't believe ti but I haven't missed meat at all)
- No Caffeine (This was the hardest for me. My lattes have been replaced with herbal teas)
- I've gone Gluten free - research gluten and the impact on your gut. It's amazing that I never even knew this and it's also amazing how avoiding it will help.
- No sugary foods or drinks (I'm lucky as this is not a biggie for me as I hardly have either anyway)
- Replace all the naughty stuff with fruit, veg, homemade smoothies full of nutritional boosters.
- And finally, all good diets are generally supplemented by herbal remedies. Us endo ladies generally have a lower energy levels, zapped in the healing process. I looked for a B12 quality one as a starter.
Ok, but how do I know all of this. I know all of the above because of 3 amazing women / authors who themselves have had endo and who have taken the control. Here they are:
Wendy Laidlow - Scottish author of 'Heal endometriosis naturally', I got most of my best tips from this book. Insightful, informative and I really understood my own body after reading this. I felt empowered after hearing her story and advise.
- Henrietta Norton - A Nutrionialist and fellow Endo Warrior. She's written 'Take control of your endometriosis' and has lots of sound clear advise. Oh and guess what? She's developed her own range of vitamins and herbal supplements, including one that is a ENDO Supplement! There's a supplement for endo. I was so excited when I found it. All on her website.
Jessica Murnane 'One part plant' book - very witty American lady who has used diet to help control her condition. Lovely recipes in this book.
Ok, so it's not always easy. When you're cooking the kids tea and their having naughty chips, you just want to grab some bread, slash the butter on it and having a buttie! But then your remember, this is a long term goal about being pain free.
And why am I writing this? I'm writing it because it's started to work. I can't believe it but I've not had one swollen tummy during the entire month. I've also not had one foggy endo head. You know the ones where you can barely speak and the world seems like a distant place? Not one. And I've got more energy. Even my children have said I seem more 'with it'. I have walked more and not felt exhausted. I've not needed an afternoon nap every other day. And I've also had a period. The 'best period I've ever known you to have' said my husband. Yes I bled, Yes I had slight tummy ache. Yes, I could tell I was on, but it was nothing in comparison. And the only thing I've changed is my diet. So yes, I still fancy the chip buttie, but I fancy being well a hell of a lot more.
This might not work for everyone. This might not inspire you. This might not be your path. But what if it is? What if you try it and it does start to help. I'm only 4 weeks in and apparently the main impact usually starts from now upto 12 weeks. I can't imagine how much better I might feel. Do I think my diet is sustainable? I'm not sure. I think the majority of it is. I know I feel hugely better phsycially and mentally so that's my motivation to continue. But do I sometimes forsee a cheeky glass of rose in my future, absolutely! But hopefully by that point I will have got my body well enough to tolerate it. Henerietta Norton talks about a 80/20 rule. Being good 80% of the time will take care of the 20% when you're not. But I'm not there yet. I want to continue on this journey as it is now to see where it can take me.
For all of those reading who are just beyond the pain, who are too tired to leave their bedroom this morning, I hope this gives you hope. A start to look for something other than the surgical routes and medication offered by the doctors and surgeons. What have you got to lose by trying? Or by reading one of the above books. The doctors don't tell you the things the authors tell you. They get it because they are us and we are them. We're all in this together. I really, really, hope this helps someone.
Hope for Endo
Hope on the horizon!
A newbie just hoping for some pain relief advice.
At long last a little hope
A little hope thanks to doctor.
