Diagnosed after 6 years

Hi, I'm new here and am desperately trying to get more information that doesn't involve getting in a Google spiral! I had an ultrasound appointment on Tuesday and got told I have an endometriol polyp and a 6cm endometrioma (chocolate cyst) on my right ovary. Apart from that I have been sent the generic advice leaflet from my GP. My GP has also put through an urgent referral for me to be seen by a specialist gynaecologist.

Does anyone have any advice on wait times for this type of referral? Will they remove the endometrioma (chocolate cyst)? And any other general advice on what I can expect now would be really appreciated!

[Endosufferer1]

Do you follow the specific diet for endo? No lactose, soya...

[Hidden in reply to Endosufferer1]

I only found out on Tuesday so not yet but I’m already vegan and I got diagnosed with IBS last month so I avoid coffee and some sweeteners

[Endosufferer1 in reply to Hidden]

Well, if endo is on your intestines (IBS), I'm sorry to say so but you can't eat all the vegetables that you want and really for myself, being vegan would be impossible (I can no longer digest eggs unless it's cooked in cakes...). Take noni juice, it helps and bentonite clay for the intestines.

[BloomingMarvellous in reply to Hidden]

If you are vegan you may want to check out the information around the Omega balance - particularly Omega 3 with hormonal regulation, endo etc. vegan versions aren’t the same EPA/ DHA fatty acids and it can be problematic.

Useful resource is Katie Edmonds book Heal Endo. It has a lot of research and information around development process for endo and management.

[TogetherWeAreStrong Moderator]

Hi Hidden and welcome to the family forum! It's a great place to reach out and ask those all important questions but we can't actually give you a possible or probable diagnosis with any degree of certainty, what we CAN do is support you, emotionally and mentally, unfortunately not physically but I would love to share my coping technics, just say the word

[Hidden in reply to TogetherWeAreStrong]

thank you! I definitely understand that, was only after some advice really! 😊

[Lindle in reply to TogetherWeAreStrong]

An endometrioma is a confirmed diagnosis.

[TogetherWeAreStrong Moderator]

Cool. Mine would be to try to get yourself into relaxing poses, stretching, comfortable positions to lie down in...

[purpleblondie]

Hello,Hope you are doing well!

I can't speak to what exactly will happen but most likely they will want to remove the polyp and endometrioma and probably suggest the Mirena or some type of contraceptive pill. Don't get a shock if they recommend induced menopause. I would say arm yourself with information and definitely get fully informed.

Hope this helps.

All the best.

[Hidden in reply to purpleblondie]

thank you! I already have the copper coil but tbh I want to get it removed now cause I think it’s only made my periods worse! Thank you I’ll check out the website

[Lindle in reply to Hidden]

Be very careful with that website - much of their information is outdated now.

[Lindle in reply to purpleblondie]

Nancy's Nook is an out dated resource full of outdated information.

[purpleblondie in reply to Lindle]

And you are basing that on what? What are your credentials to make such a claim? The website dives into the medical research available, personal experiences and the professional expertise and experience of Endometriosis Excision Specialist Surgeons. If you don't mind me asking....what is your updated information relating to Endometriosis?

[Lindle]

My updated information is based on published evidence from the research scientists who study the disease. Much of what the Nook uses is based on papers and opinions by David Redwine from the 80s . This used to be clear from his website but it’s been taken down now.

A typical example is a recent comment on another platform when it was talking about endo spreading and the founder of that group came in with their evidence that it doesn’t, that being a paper from 1987. Sometimes articles remain current no matter how old they are but there is now an abundance of evidence of ways by which it might spread, for example through the lymphatic system.

Excision surgeons are rarely research scientists. It is the immunologists, endocrinologists, pathologists etc who are the experts.

[EUKSupportTeam Partner Endometriosis UK]

Hello Everyone.

We do ask that our forum users don't signpost to sites such as Nancy's Nook, we are unable to verify that the information on external sites is correct. Also Nancy's Nook is US based and therefore some of the information will not be relevant to the UK.

If you are looking for information about endometriosis, the symptoms, treatment options and getting a diagnosis, please take a look at the information pages on the Endometriosis UK website endometriosis-uk.org/inform.... All the information on these pages is checked by our Medical Advisory Panel.

Thank you

Lynne - Endometriosis UK

[EUKSupportTeam Partner Endometriosis UK]

Hello Everyone,

We know that there is a lot of interest in how dietary changes and nutrition can help manage endometriosis symptoms. We know that making changes such as cutting out certain foods can help some women managed their symptoms, however this tends to vary from person to person. You can find out more about managing your symptoms on our website endometriosis-uk.org/treatm.... We would suggest trying to maintain a healthy diet is the most important thing.

Best wishes

Lynne - Endometriosis UK