Question

[Tboag]

I was wondering how many ladies have seen a specialist, been operated on and are still experiencing pain,

Just seems so many of you been diagnosed for such a long time and still suffer,

WHY IS THIS.?

[Tanni]

I'm not sure why this is either.....I've been asking myself the same thing! Had a lap 4 years ago, some endo removed, had a lap at specialist centre 1.5 years ago and all endo removed.....been having continuous back pain since but since end of Nov I've been in agony and on 18th Dec went private to see consultant (same as before but needed to be seen in a matter of days due to pain I was in not the nhs 3 month waiting list!) and he referred me for urgent lap (back into bhs luckily as I couldn't afford the £3000 price tag!) I rang last Monday and was told as of 30th Dec it would be 6-8 weeks....phone call yesterday it's going to be on Monday!

I've been on the sofa since 4am unable to sleep due to pain....I just don't understand why it has Come back when apparently all was removed and I've got the coil so meant to keep it at bay! If I get answers on Monday I will let you know....but I doubt they will give me information as to why it's one back....I think it's just bloody unlucky genes at the moment 😭😖 xxxxxx

[Georgina78]

Hello

I was diagnosed in 2013 after many many years of being 'fobbed off', I was operated on that year and experienced an immediate relief in my symptoms, however that relief only last around 7 months.

The problem with endo I have been told is it can grow back as it 'feeds on' (a doctors words) the oestrogen our bodies produce each month which of course continues to happen whether we have had surgery and excision of deposits or not. One doctor also told me that they have removed all they could see during my laparoscopy but sometimes endo can get into very tricky places that can't necessarily be seen, meaning some could be left behind.

It's very depressing and I continue to get very fed up some days with this condition, however I have come to terms with the fact that I have it for the foreseeable future and have mostly learnt to manage it when I have a flare up, the worst thing for me right now is the fertility issue as a result.

I think lots of ladies also suffer because it isn't always taken seriously by medical professionals and can be seen as just a women's problem we have to just deal with, there's also I found a varying amount of knowledge about it between doctors but I have come across some very helpful and knowledgeable doctors and I would urge anyone not getting anywhere with a particular professional to try and see someone else.

Hope this helps X

[ccfd9]

From some of the research undertaken at the Endometriosis and Fertility Clinic, where we specialise in nutritional therapy, we discovered that 80% of endo sufferers gained some relief from their pain when they removed wheat and gluten from their diet. This was backed up in Italy by a group who found that 79% of endo sufferers gained some relief by removing wheat from their diet. We also found that 60% of people also had a problem with bovine dairy (Cows milk and products). We think that there is a link and are working on that. However, if you can get some relief by removing wheat from your diet then surely it must be worth trying?

Some people can react very quickly if wheat is eaten again, while others get no immediate pain, but when their period comes the pain levels shoot back up. You have to be careful of hidden wheat, you have to read the ingredients list carefully, if it says starch or modified starch then avoid it. However, if it says maize or corn starch then that is fine as maize or corn is generally gluten free. Basically, being gluten free is a whole nightmare at first working out what you can and cannot eat. Luckily things are much easier now, restuarants must tell you what foods are gluten free and the choices of bread are at least edible now. When we started gluten free the bread available was like cardboard and eating out was a nightmare - jacket potato was the only option in many places - and supermarkets have a "free from" section.

endometriosis.co.uk/

[Elwood in reply to ccfd9]

Unfortunately this doesn't work for everyone, I have done exclusion diets and they have not worked for me. I still don't eat cow's diary but have re-introduced wheat and the only difference I can see is bowel functionality changes between them.

[ccfd9 in reply to Elwood]

With many people the bowel functionality changes are enough, the bloating and distension can aggravate the pain and yes I did say it only works for 80% of people and to a varying degree of success.

[Elwood]

My consultant talks a lot about deep endo and microscopic endo, of course if it is microscopic it can't be seen in surgery and can grow from there. My problem is chocolate and hemorrhagic cysts on my ovaries, unless my ovaries are whipped out I don't see them stopping any time soon x

[ccfd9 in reply to Elwood]

Depends on the size of the cysts, if they are less than 5cm diametre then they can be shrunk with nutrition.

[Elwood in reply to ccfd9]

Is that proven? Can you send me a link to the medical journal? Think that would be a useful read

[ccfd9 in reply to Elwood]

We have only anecdotal evidence, doing research with nutrition is not easy and getting funding is impossible - there is no profit in it. Plus having an operation to show that there is no cyst or endometriosis after a course of treatment which leaves you with no symptoms is morally and ethically wrong.