Control endometriosis with diet?

[Jenna111]

Hi All,

So I've been told I may have a cyst in my right ovary and suspected endometriosis as well as adenomyosis. This was only detected because I was in considerable amounts of pain last year and had to in emergency to the hospital

At first I was dismissed and told it is 'only period pain' and I should be able to cope with painkillers. Second time round when I went into hospital with pains I was offered an emergency surgery but I was scared to go ahead. I was not sure why I needed the surgery.

I had asked for an MRI scan and from that it was revealed I have suspected endometriosis, kissing ovaries, adenomyosis and a large cyst. The docs refused to operate after the MRI saying I am coping okay now. But, they did say I need to be on some form of contraception ie pills or the Mirena coil to suppress the growth of endometriosis.

Having never used anything to control my hormones before, I thought I would try the pills rather than go for the morena coul. It worked really well (I was told to take them 3 months back to back) and then have a week break. And during this break I had a lot of bloating and pain.

6 months on since I have been taking the pills I have now agreed to surgery and I am considering the Mirena coil. I was wondering if I could possibly control my pains via lifestyle and diet? I really didn't want to take anything that will affect my hormones .

Any advice will be appreciated.

[Sunset-lady]

Most people on here recommend a great book called Heal Endo. The big things that make a difference with me are zero alcohol, limiting sugar and trying to keep wheat and gluten out of my diet. Also, don't eat ultra processed food - thus makes me feel tertible. Some people eliminate dairy and coffee but we are all different so you need to just try it and wait and see how you are. Moving also helps - do pilates or yoga or if you are well enough something more strenuous. Good luck. It might take some time and keeping a food journal helps. Cooking everything fresh makes a big difference.

[Zanlancaster in reply to Sunset-lady]

may be if help

Good book

[Sunset-lady in reply to Zanlancaster]

I read this and thought it was very good. It's quite old and subscribes to the idea of taking lots of supplements but it's very good at explaining everything

[Zanlancaster]

it is definitely good to control your diet and it may help with the flares up but in my experience it didn’t get rid of the cysts. I’ve just had ovaries and tubes removed, ovary was stuck in my bowel so I was glad to get the op in the end but I still follow the first the best I can to control inflammation

Helpful book

[GreenViolin]

Hi Jenna. As Sunset-lady says, Heal Endo is indeed a great book for tips on managing endo successfully including by diet, although it’s made very clear there is no one size fits all solution.

I have tried all sorts with diet. I know I’m sensitive to too much dairy and gluten so I’m careful how much I have without cutting out completely as I didn’t find that really had any more positive impact. Caffeine also affects me, so I mainly drink decaf. Other foods it can vary depending on how much pain and bloating I already have. Having gone through Tim Spectre’s ZOE programme and read his books and also the Glucose Goddess, I find that following an eating lifestyle that enhances my gut microbiome and controls my blood sugar is optimal for me. It has helped me in so many ways, e.g. more energy, clearer complexion, no more fainting due to blood sugar lows etc. It has not however done enough to control my endo, adeno etc, so I had my third surgery getting on for 3 weeks ago for the endo. I’m holding out ob having a hysterectomy to get rid of the adeno in the hope that my recent lap will be enough to manage my symptoms for now. Most of my adeno symptoms are managed effectively by the Mirena which stopped my periods, so it just remains to be seen whether the constant pain and bloating was from the endo only or whether the adeno is also causing this.

I tried all sorts of hormonal treatments before I was offered the Mirena nearly 15 years ago, and not only did they not help me, they either made it worse or gave me new symptoms to have to deal with. I personally think that my body copes much better with local delivery of the hormones to the area that needs it (via the Mirena) rather than being flooded with them more generally.

Good luck with it all. Always tough making decisions when we all react very differently to the solutions provided. So much we still don’t know about these diseases!

[Jenna111]

Thanks everyone for your advice and support. I guess there's no harm in trying out the mirena coil whilst under anaesthetic and controlling my diet. I'm having my laproscopy next week

[Bellebell]

I did an elimination diet where I basically cut all the food (;-)) out of my life except for fruit and veg, pulses and rice for two weeks (but I couldn't stop the caffeine). For me, cutting out dairy made a huge difference and was worth it to be in so much less pain when I had my period and after. I think it's different things for different people and as said by others, try not to have too much ultra-processed food.

[Jenna111]

Thanks Bella. My surgeon rang me a little while ago and cancelled my surgery. Saying I need to be transferred to a more specialist centre, where bowel surgeons will be on board.

[Sunset-lady in reply to Jenna111]

It's annoying when things are delayed but they had to abandon my hysterectomy because they didn't have the right team there. You need the whole crew just in case! Good luck x

[Jenna111]

Thank you sunset lady, you have been so helpful. I'm so glad to have joined this group.

[EmB18]

I also found that changing to a more anti-inflammatory diet made a big difference to my endo symptoms. We all react to different things, but wheat and sugar were big triggers for me. Managing stress is really important too as having endo is stressful alongside every day life stresses and stress can really flare endo up.

[Jenna111]

That's the hard bit ....I'm always stressed out