Newbie to this space - stage 4 - multivits and supplements advice for endo?

[aannaa]

I'm a newbie to this space and definitely should have signed up many moons ago to connect, reach out and better inform myself. Still, here I am, finally!

I'm stage 4 (DIE) with multiple lesions, colo/rectal bowel involvement & a very unwelcome, large endometrioma. My story is worryingly similar to so many with years of medical dismissal for "period pain". A year ago, I left the GP surgery in tears as I was legitimately told I was "wasting the NHS' time asking for another scan.. that my previous scan showed as "normal" with a 'functional cyst'.. I didn't need to be concerned as this will likely go away by itself .. and the pain I was experiencing was "normal" .. (*anger levels rocketing for my past self!*).

I hit my edge with chronic/ severe pain amidst the pandemic, debilitating pain, extreme fatigue, sickness and hours curled up in agony. Loved ones rallied around me and afforded me to go to a private clinic for a diagnostic scan. This felt like the final plea. The diagnostic report I got from that private appointment was the best and worst bit of paper - I finally felt validated. I had a huge wave of guilt, being helped to even be able to get help to see a private specialist, when for so many this wouldn't be an option financially. An exhausting amount of self advocating to get to this point and without the financial help of others I might still be believing that my pain was "normal"..

I'm currently on the 6 week countdown to surgery within the NHS after a very long wait. It can't come soon enough and I'm so grateful.

This is a fairly simple shout out for recommendations of multivits to prep my body as best I can. I already take vit D tablets but I'm aware that people with endo can suffer from other deficiencies. I want to help my body in the waiting - pre and post surgery - as best it can. Anyone have essentials as part of their toolkit that they use to help with inflammation, overall health with endo and healing post surgery?

Thanks for reading the brain dump and any vitamin/ supplement/ pre op prep tips welcome!

[R2D2-]

Hi Aannaa, I take a good multi vitamin supplement, an Omega 3.6 &9 supplement, a strong probiotic and a combined CBD and turmeric capsule. I was recommended similar by a friend who had Endo for many years. I tried a few different combinations and found these the best for me. Good luck with your op I was diagnosed this year after laparoscopic surgery. Good luck and make sure you have help after the surgery. I would recommend reading up about it on here. Good luck and best wishes. J x

[aannaa in reply to R2D2-]

Hey J, thanks for taking the time to write & share experiences. That’s so helpful to hear - I’m a veggie (+ avoid gluten) and definitely think it’ll help to up my Omegas.

You’re the third person to recommend turmeric/ curcurmin tablets to help tackle inflammation. Aware they’re not cheap for high quality but honestly anything goes at this stage!

CBD has been a game changer for me with managing pain. Again, not a cheap option, but I’ve found its curbed my pain just as well as NSAIDs - without all the horrible gastro reactions I normally get.

Thanks so much for the advice. Really appreciate it. So glad you’ve finally had some answers this year from lap - will absolutely read up on what to expect via the forum. Scary, but empowering to know where I stand with it all now.

A. x

[EmB18]

Hi, great idea to give your body some support to help prepare for surgery. I'd go for lots of anti-inflammatory foods like fruit and vegetables, ginger and turmeric. Vitamin C rich foods like berries, citrus fruits, peppers and broccoli can help with healing and are also anti-inflammatory. If you don't have much appetite after surgery you can try getting these foods in soups or smoothies which are also easy to digest. Hope your surgery goes well.

[aannaa in reply to EmB18]

Thanks so much for this Em. Really appreciate this advice & think some food prep, smoothies, soups etc post Op will be needed. I’ll be having bowel prep & quite possibly bowel resection .. may be quite a journey & adjustment for my digestive system.

I’m a veggie & love packing in nutrient dense foods - incorporating foods that target inflammation is a helpful reminder. Big believer in food being medicine & have already seen some huge changes in avoiding trigger foods these past 2 years. For me avoiding gluten & minimising diary has helped hugely!

Thanks so much for your help! A. x

[EmB18 in reply to aannaa]

So great that food changes have already helped you and hope things settle down for you quickly after surgery.

[LME5]

I highly recommend Dian Shepperson Mills' book - Endometriosis: A Key to Healing Through Nutrition xx

[aannaa]

Thank you for the reading recommendation. Will absolutely get myself a second hand copy. I've just finished 'Know your endo' by Jessica Murnane - which gave a really helpful overview for health/ diet/ lifestyle - but really keen to dive deeper into nutrition as a tool for managing the disease. That's hugely helpful, thank you!

xx

[Lindle]

The most important part of your post treatment-wise is that you have stage 4. You say you are awaiting surgery on the NHS - is this is a specialist endo centre in tertiary care and not in normal gynecology as it must only be done by excision surgeons working in a multidisciplinary team in a centre.

[aannaa]

Thanks Lindle, really appreciate your comment. I’ve never had surgery - so this will be my first Lap. The MRI showed enough to put me forward for surgery for endo. It’s happening at an NHS BSGE endo specialist centre & the surgeon specialises in keyhole/ endo excision. I’ll have colorectal on standby & have been prepped for the outcomes of bowel reconstruction. I feel like I’m in the safest hands I can be.

Important advice to give people as it absolutely must be a specialist. x