How can it only be “minimal Endometriosis”? 🙁

[BethanyAnn]

I had my second laparoscopy on Friday and they found a 4cm Dermoid Cyst on my right ovary, a small fibroid on my womb and a couple of Endometriosis implants in my left ovarian fossa.

They were expecting an Endometrioma, not a Dermoid Cyst which apparently isn’t related to Endometriosis at all.

After my surgery, my surgeon (an Endo specialist) kept telling me my Endometriosis was so minimal and I’m lucky but I couldn’t help but feel really annoyed by him saying that when the pain has been agonising for so long!

I feel like people look at you like you’re pathetic when they say you have minimal Endometriosis even though you complain about extreme pain. It’s not fair! 🙁

How can it be so minimal when the pain is so bad?!

[HikerGirl]

Hi BethanyAnn

I'm sorry hear you're in so much pain, have you been aware of your endo for a while?

Unfortunately, there's still so much mis-information it, I would recommend you visit the Endometriosis UK website if you haven't already as they have some great FAQ's etc.

In regards to the level of endo found, research has shown that the stage does not determine your symptoms. There are women with stage 4 that have absolutely no symptoms and women with stage 1 that are in excruciating pain. Do not let them tell you otherwise.

I've been dealing with this condition for some time now and have found some great tips on here for self-care options that have made a massive difference (diet, exercise etc.). Happy to talk through with you if you need and this forum is so good if you just want to vent!

Molly xx

[Holleymuzz in reply to HikerGirl]

My first lap found minimal endo in 3 areas. Fast forward 2 years of no treatment being discharged because it was minimal and they ‘burnt’ it off it’s all over my pelvic area and at stage 3/4. My pain has worsened but at the minimal stage it was still pretty bad! Yet I know a woman who was pretty much riddled with endo on all her pelvic organs at highest stage and had hardly any symptoms! She only found out through having a c section!! X

[BethanyAnn in reply to Holleymuzz]

Hi Holleymuzz, that’s so interesting! Good to know I’m not going insane 😂 hope you have some relief now! x

[BethanyAnn in reply to HikerGirl]

Hi Molly, I had a diagnostic laparoscopy in May 2017 because scans showed an Endometrioma but when they operated they couldn’t find the Endometrioma but found minimal Endometriosis elsewhere 🤷🏻‍♀️

This time round they thought that same Endometrioma was still there and had been missed but it turned out to be a Dermoid Cyst, small fibroids and minimal Endo elsewhere.

I’m hoping this surgery will really help with the pain but my surgeon did say Endo will eventually return again so I should look at Endo diets and continue with my exercise.

What diets and natural remedies do you use or try to follow? I’d like to avoid having a third surgery so I think a diet change is the way forward! Thank you 😊 x

[EndoBattle in reply to BethanyAnn]

Two really good books that I think you will get benefit from are

“The Endometriosis Health & Diet Program. Get Your Life Back” by Dr Andrew S Cook and Danielle Cook

And

“The doctor will see you now. Recognising and treating Endometriosis” by Tamer Seckin.

Both reasonable secondhand from Amazon. Hope you find them helpful. Claire xx

[EndoBattle]

Hi BethanyAnn

I know it’s frustrating but I think he means minimal in terms of size. A lot of ladies on this site have extreme endometriosis which has spread to a lot of their internal organs. I’m sure he is trying to be positive and reassure you that they have caught it early. Now minimal does not equate to level of pain. A tiny bit of endo, depending where it is can cause excruciating pain. I’m riddled with endo. The pain didn’t get unbearable until it attached to my bowel and bladder. Hope this has helped. Claire xx