Does diet help?

Hi. I have been recently diagnosed with chocolate cysts in both ovaries and some endo on my bowel. Consultant recommended a laparoscopy or a three months artificial menopause. However, we have a lot happening in the next few months and they have agreed to see me again later in the year.

Can I realistically 'help myself' by changing my diet? I eat healthily but I love chocolate and wine! Any advice appreciated. Thank you.

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  • I think diet changes work differently for everyone. I follow a gluten free diet and excluded dairy and things first to see what made a difference. This change made a difference to my pain levels and bowel movements quite quickly. Personally, I am allergic to chocolate but still get headaches and still have a drink.

    I wouldn't say definitely recommend a gluten free diet is the way forward. I recommend getting as much information as possible and see if you can get access to a dietitian.

  • Thank you for your reply! I have been gluten free for the last five years as IBS was my initial diagnosis! The list of things not to eat on the endo diet is so extensive!! I will try that though, perhaps exclude dairy first and then move onto other things rather than get rid of it all at once! Thanks again.

  • Ive changed to gluten free as I suffer terrible with my bowels I get consipated all the time but since changing I'm only getting conspitated when I'm on my period which a lot easier to deal with than every couple of days x

  • Thank you. x

  • I have found changing my diet really helpful, I have cut out wheat, gluten and sugar and have increased the amount of good fats, protein and green vegetables I eat. I hardly drink any alcohol but really notice when I have sugar and alcohol that my pain (including headaches) and energy levels suffer. I went to see a dietician but didn't find them very helpful, however I have seen a nutrionist on 2 occasions and they were brilliant! I now have coconut or almond milk, can still get away with eating some cheese, eat a lot more seeds, nuts, beans and greens. I also drink water or peppermint tea (so no caffeine). I think it is a bit of experimenting to see what works for you! I do have the odd slip up but it doesn't matter too much if for the majority of the week I have been strict. Henrietta nortons book on endometriosis is good. Also the 'I quit sugar' book is good too hope that helps.

  • Yes I suppose the 80/20 rule could apply? Thank you very much for your advice! x

  • Hi

    Who is the consultant? Is it just a general gynaecologist in a local hospital? You have at least stage 3 endometriosis out of 4 stages. Any medical treatment, including 'artificial menopause' GnRH agonists are only effective in stage 1 minimal disease. GnRH agonists work on your brain and can cause severe side effects, including permanent ones, and have no long term benefit. So you must not take this.

    You must get on the waiting list of an accredited endometriosis specialist who is qualified to treat your stage of endometriosis and don't put this off. You will no doubt have to wait a while anyway. The NHS guidelines (NICE) confirm that you must only be seen by a specialist in a Centre of Excellence. You can choose anyone you like under the NHS in or out of your area. Take a copy of the list and take it your GP and tell him/her you want referring to a specialist centre as recommended by NICE. They cannot refuse. The list is at:

    bsge.org.uk/ec-BSGE-accredi...

    Endo is a disease of the immune, endocrine and reproductive systems. It is an allergic condition so the best thing a woman can do is eat no processed food as this is loaded with chemicals - just food made from fresh ingredients and lots of fruit/veg and drink lots of water. Also weight should be kept down as oestrogen is produced in fat tissue and overweight sufferers can often have most severe symptoms.

    Linda x

  • Hi Linda

    Thank you for replying to this thread. I have been following with interest many of your comments on here.

    Since I posted this question I have obtained a copy of the MRI report which states that there is also thickening of the recto vaginal septum. This also made me wonder if I should be referred to a specialist, but the guidelines I read state that my gynae consultant would have to do this?

    I am currently under the care of a general gynaecologist at my local hospital. My problems only really began in October with a ruptured endometrioma and to be honest, I don't really suffer much at all. Which is another reason why I declined the surgery offered to me in January.

    Perhaps I should see my GP? I have another appointment with the consultant in May?

    Marie

  • Hi Maria

    You can change consultant whenever you want especially as the NHS itself says you should be dealt with in a centre. A problem with endo is that some women have great pain with minimal endo; some have little pain with severe endo. It all depends what nerves or ligaments etc are involved. But an endometrioma that ruptures is likely to have spread endo deposits and add a general gynaecologist rummaging around and before you know where you are it can be everywhere. I had a hysterectomy and ovaries removed at age 44. There was no endo reported and all were confirmed healthy by the path lab. I was given vast amounts of oestrogen therapy (which obviously should never have been done) and at age 51 I was finally seen with a large ruptured endomerioma that had burst 4 times. This was incompletely removed by a general gynaecologist (they usually do what's called de-roofing) but it arose from just one small area in the Pouch of Douglas. So I must have only had that one small deposit originally. Four years later I had 6 hours of radical excision to separate my bowel from my pelvic wall, had my bladder and ureters shaved as they were covered in endo and had my entire posterior peritoneum removed as it was covered. All this from a ruptured endometrioma that spread it everywhere. My message is that advanced endo starts out as minimal endo at some point in time and becomes advanced by inappropriate treatment by gynaecologists not experienced enough to treat it along with the passage of time. You can wait until you get symptoms that suggest it's progressed but if you do you must be sure not to let a general gynae operate on you, only an accredited surgeon. When you go in May take a copy of the list with you and tell the consultant that if you need surgery then you will have it by an endo specialist as recommended by NICE. Any gynaecologist worth their salt will have no problem with you following NHS guidelines and should support you. As I said before, NHS Choices allows you to see whoever you want anyway. Take care x

  • Thanks again Linda, I really appreciate your replies. X

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