Hi everyone, I’m new to the forum and looking for some general advice. I had endometriosis when I was 19. I had a laparoscopy and didn’t have any symptoms for 20 years. However last April the endo came back with a vengeance. I’m sure my story of suffering is similar to everyone on here and the past year has been pretty bad resulting in two stays in hospital on oral morphine for the pain, time off work, daily painkillers and everything else that comes with this debilitating illness.
I’m now just looking for some advice on how to manage things. I had a laparoscopy last Friday where the endo was removed but I’m in pain again today and ended up at the GP in tears once more (I could just move into my GP’s). I’m now getting the Mirena coil fitted next week but I’ve had horrendous reactions to hormone treatments in the past including schizophrenic episodes and extreme low mood including suicidal thoughts. Despite this I’m willing to try anything.
So, after the long background the main things I’m wondering about are how diet effects the endo? What should I maybe try removing/reducing in my diet? How do people manage the pain? I’ve taken painkillers everyday since September moving from paracetamol and ibuprofen to co-codamol and finally tramadol. I’d really like to reduce how much I’m taking. And finally, does anyone else suffer from extreme fatigue? How do you combat this?
Thank you for reading.
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Rai78
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The liver has an important role in metabolising excess hormones so eating foods that help it like leafy greens and avoiding foods that strain it like wine is likely to be helpful.
The casein type in dairy is important apparently. Originally cows' milk had A2 beta casein, the same as human milk. But dairy production caused a mutation into A1 beta casein that has seemingly been proven to have adverse effects on immune and endocrine function. There may be a case that it is potentially harmful for anyone, but particularly for someone with an immune/endocrine disease like endo. A2 milk is available or there are numerous plant milk alternatives soya, almond, oat milk, rice milk etc. Bute Island Sheese is a very good dairy free cheese alternative option.
Gluten is known to be inflammatory due to gluten but also due to Amylase trypsin inhibitors (ATIs) . Although the specific reason is unclear a retrospective clinical research study lends weight to the view excluding it can be beneficial for Endo with 75% of people seeing reduced symptoms after 12 months.
It also has an autoimmune connection and triggers the release of zonulin which can contribute to increased intestinal permeability (so called “leaky gut”) , which, though not yet recognised by the medical establishment or NHS ( in part due to historic outlandish claims in the alternative health industry) does have a growing body of evidence supporting it, and also appears to have associations with auto immune diseases, which Endo appears to be.
Wow, thank you. I'll certainly read up on all the info you've provided. It's feeling quite daunting now but I'm sure once I've made some changes it'll get easier to manage. Thanks again.
I started following a diet which is almost exactly what Starry described (I also cut out meat and caffeine and I do still eat gluten) two years ago when my endo flared up again and it really has made so much difference for me. I have a mirena and it has also helped a lot for me, I decided to change diet for similar reasons to you - I was taking a mini pill along with it that was badly affecting my mental health.
The thought of cutting things out forever was very daunting to me at first so I took it quite slowly and tried removing one thing at a time, leaving it for a few weeks to see if it affected anything and then tried removing another thing. Pretty soon I was feeling better enough that the thought of not eating those things anymore/very infrequently seemed insignificant.
Although it hasn't cured my endo completely, it has almost completely eradicated any pain that I'd have outside of my period and generally the pain during is much less intense than it was before. I really hope that you find that it helps you too, it sounds like you've had a really rough time.
Thank you indigo, so far I've cut out gluten and dairy which has actually been quite easy. I don't have caffeine as it has quite a strong effect on me and I don't eat red meat. I'm going to avoid fizzy drinks as well I think. The pain is almost non existent at the moment so we'll see how it goes.
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How were you diagnosed?
