Guardian Article about Edinburgh Uni major study about diet and endometriosis

[Regenallotment]

Biggup Endometriosis UK who get quoted

Here is a link to the Guardian Article about diet and Endometriosis major study

theguardian.com/society/202...

[Sunset-lady]

I agree with the findings. Giving up gluten helped but giving up dairy changed everything.

[Welliewacker]

5 weeks ago I gave up gluten/wheat and any other refined carbs. The difference in pain and bloating has been huge. I've gone from looking 5 months pregnant to barely any bloating. It hasn't prevented the pain from endometriomas, but I feel so much better.

[JOSANDY40]

Well I read the article.My Endometriosis started at 10yrs when my period started.

I didn't have bread, pasta onions, garlic, coffee. We ate fresh veg, fresh fish and fruit everyday there were no ready-made meals. My mother made all the cakes we ate. There were no fast foods locally in a small village.

We did use the New Tupperware! My parents grew alot of food and pesticides were used. I also lived near a Govt. experimental farm and I swim in the water next to fields. My father had a factory which used chemicals as children we went there. Though there is noone else in my family with Endometriosis.

As growing up I suffered badly with allergies. Both my parents had some allergy but not like mine with food, animals and plants.

I experienced long heavy periods of 10days from 10yrs in the 60's, the doctor said it would settle.

By the time I married at 20yrs the pain was worse. I tried several Pills but had difficulty with them, nothing changed and the pain had none into days beyond my periods, but after 4 yrs I was on the Pill constantly. At 26yrs I collapsed, rushed to Hostipal, apparently with a twisted bowel and organs shutting down. After a few days in a NHS hostipal, after tests, tubes, a drip, hearing what they intended to remove my bowel I used my private care and went to Parkside Hostipal where tests carried out that morning showed many other things including, the Endo, the cysts, bowels several issues and severe organ distortion. My womb was pushed back to the spine, right ovary coming across to leftside, left ovary disconnected and sitting lower near the bowel, covered adhesions with a cyst on it. The stomach had lesions. The specialist said he had never seen Endo this extreme. It was a major operation with a bowel resection which took several hrs. The right ovary moved over, the left rejoined in a straight line, the womb moved, pinned into correct place. It took me year to recover. I went onto steriod Danol which was hard to get hold of. I put on 2 stone. The pain still parts of days and painkiller kept me on my feet, back to my career as a Designer. A few yrs past then the pain got terrible, yet other cysts, that repeated over the yrs. I came off the Danol and my lungs started bleeding every mth so went back on the Danol. Then after several yrs of Danol I got Pancreatitis caused by the Danol. So I changed then to the New Zoladex drug. I stayed on Zoladex 15yrs. I did try IVF with Lord Winston but was very ill.

I had to give up my career in Design due to falling asleep at desk, in the toilet, or staff ot Company concerns.

I still have pain or problems every day. I can't walk far sometimes a problem if I can't feel my legs while in pain. I am very knowledgeable and careful with what I eat, reading so much medical journals.

Over 10 operations now. Last yr I had 2 last yr.

I don't take Zoladex anymore, but in peri-menopause I had to take morphine to manage the change. I am post menopausal but the Endo is still growing yet a lot slower. I am very bedded down so they are nervous I could get organs removed or nerve damage.

Due to my 2nd marriage suddenly expiring I developed PTSD.

I have Diverticulitis, Colitis and still allergys, now I have asthma too. Gluten, Lactose intolerance and don’t eat foods like banana because of Histamines which give me breathing issues or foods like Soya which contain Estrogens.

I read a article about in US in the 1970's monkeys were fed plastics and polystyrene all but 2 developed Endometriosis.

That's a longtime ago. It seems we are still nowhere to dealing with Endo. So many Gynaecologists are still talking the old talk. Many woman who have Hysterectomy still have live Endo. More woman are getting it and it's discovered in men's Prostates now!

12yrs+ single I'm finally coming out PSTD with the help of Venlafaxine. Pancreatitis in the wings, not sure I will be totally off of it after physical and mental abuse.

But I am happy, hobbies and a boyfriend.

[nikogirl18]

I personally had a gluten free diet for months before being diagnosed with endo as the initially thought I had ceoliac disease. I was confident that it wasn’t as a gluten free diet did nothing what so ever for my symptoms and I was proven right when biopsies confirmed I did not have coeliac disease.

While I agree that diet and alcohol consumption can make a difference - it is not the same for everyone and I do think endo suffers should be under the care of a dietician and part of a multi disciplinary team to help figure out what works for them. Something I have been unable to access as someone who now has a confirmed endo diagnosis, ironically enough in the Edinburgh area 🙃

[OlgaSz in reply to nikogirl18]

I couldn't agree more - multidisciplinary team of gynea, physio, dietitian, psychologist... That's a dream that would improve lives of so many!

[Bellebell in reply to nikogirl18]

Gluten has zero impact on me too, it makes no difference whether I consume it or not. However, I did an elimination diet - eliminated most things from my diet for 2 weeks and then slowly reintroduced them - and found that dairy made a HUGE difference to my periods and overall quality of life. Post 2 surgeries I can consume dairy again years later but I remain wary and have gone off a lot of dairy products. I did that because of the time it takes to a) get diagnosed and b) get treatment so I did this to help myself. I agree that the triggers are different for everyone - might be meat, alcohol, gluten, caffeine, etc. for different people - but looking at diet is an important self-help move because in reality, there isn't much support out there and when I spoke to gynaecologists, only one had any idea that diet might make a change and offered suggestions (after I had asked)

[OlgaSz]

After my diagnosis I dived deep into all available research and found these findings in separate studies. I implemented all those changes 1.5 years ago and my endo has never been better. Also with some additional changes I made - like daily yoga and removing most endocrine disruptors I could find - my endo is under control most of the times and I hardly ever need painkillers nowadays. I understand that we are all different, but I believe we can all at least try to implement those changes to see if we can help ourselves. Especially when it takes on average 7 years to be helped by the NHS.