Endometriosis found but I don't have endometriosis.

[Hunter9506]

I am so confused. Had my laproscopy last Friday. They found endometriotic spots on my right ovarian fossa, pouch of Douglas and left pelvic side wall. They did Helica treatment on them. Doctor then came in and said I didn't have endometriosis as he's burnt them away. Tried to get refered to a specialist via my GP and she is refusing saying I don't have endometriosis as he has burn it away. Is this correct?

[ZiggyandBC]

If endometriosis was found then yes you have endometriosis, even if he’s gotten rid of it all. It’s a chronic condition that has no cure so it’s likely to come back. Did you get any notes on your discharge papers?

[Hunter9506 in reply to ZiggyandBC]

The discharge letter says,normal uterus, ovaries and tubes. Filmy adhesions at umbilicus-divided. Endometriotic spots in right ovarian fossa, Pouch if Douglas and left pelvic side wall. Helica treatment to endometriosis. Minimal EBL. He discharged me from gynae with no follow up or treatment lan saying I don't have endometriosis as he's burnt them off. Gp I rang today said the same and refused to refer me to a specialist. My notes have pictures of the procedure but I would need to request them

[ZiggyandBC in reply to Hunter9506]

So they’re trying to say you did have endometriosis but you don’t anymore because they’ve got rid of it? X

[Hunter9506 in reply to ZiggyandBC]

Yes, they said they found endometriosis but it's gone now due to them burning it off so I don't need a follow-up

[gettingusedtoendo in reply to Hunter9506]

What the hell! That flies in the face of the idea that endo is a chronic condition. This is really concerning. Please speak to another GP and get them to rationalise this

[Hunter9506 in reply to gettingusedtoendo]

Yes I want to know if I have a diagnosis of Endo so that if symptoms do persist i can say. Yes I have endometriosis and not have to faff around for another 10 years chasing a diagnosis again.

[Lindle]

Endo is a chronic inflammatory disease of the immune and endocrine systems that manifests as lesions, usually in the pelvis. That is the definition I like to use which is based on that by the American Endo Society.

So this surgeon is just talking about the lesions - that is, the end product of the disease. So you can think of having endo that has currently been treated. You wouldn't get to see a specialist now though unless you have ongoing pain. In fact you should only have been operated on by a surgeon with a special interest in endo which means having done additional training above general gynaecology (NICE/NHS England guideline).

Treatment is essentially for pain and or infertility. So monitor your symptoms and if you still have pain or it recurs that is the time to see someone with a special interest. They are incorrect in saying you don't have endo but are correct in that you don't need a follow up at this time unless you are in pain still after say 3 months. I do think we have to consider how behind they are at the moment.

[EndoSuckss in reply to Lindle]

This answer is perfect, and so brilliantly explained!

[girli1111]

I was diagnosed with ‘grade 4 deep infiltrating endometriosis’.... but I no longer see endo specialist or gynae as, touch wood, my last excision treatment, which also resulted in removal of my second ovary, means I no longer have any endo symptoms. If I was to start experiencing symptoms again, which could happen as I was told there was some endo left on my bowel, then I would seek referral back. Fingers crossed for you that good surgery has relieved your symptoms.

[Ioanaap]

Well that's messed up what is wrong with them?

[StevieMay88]

BMI Healthcare are experienced in Endometriosis, so you are entitled in having a Consultation with them and explain what has happened and they may be able to check for themselves. By law, the GP cannot refuse a referral.

[Linz010]

Hi this happened to me I went for a diagnostic lap where they found endo lesions on my uteral sacral ligaments and adeshions on my bowels and didn't do anything with it he just signed me back to the docters saying I don't have endo and to be referred to gastro 🤷‍♀️

[Hunter9506 in reply to Linz010]

Yessss he said he thought my pain was bowel related. I'm already under gastro though.... I've asked for a second opinion and my GP sent me back to the same consultant. We just can't win can we 😂

[Elsiegreeneyes]

Ugh! I had a similar experience. The consultant reported that he found 'inactive endometriosis'. He also did Helica treatment. At the post op appointment 10 months later, he said that I didn't have endo because it was inactive and he had treated it and then wrote to my GP telling him that my symptoms had improved since the treatment! This was totally untrue and I was furious - I had never said such a thing. Now, 3 years later, the pain is worse than ever and so debilitating. Consultants still say it is 'inactive' due to what he wrote in his report and the only way to say otherwise is to have another lap, which I really don't want as I think it does me more damage than it's worth. One of the specialists I saw recently reassured me by saying that I know my body, I know my pain, I know that endo was there and still is there because I am managing the symptoms every single day. She basically said to try not to get too upset about that one diagnosis and live my life knowing that I have it. It's so frustrating and invalidating though. He was so rude from start to finish and for being the first consultant I had ever seen, left me with so much confusion and upset. On the bright side, my new consultant is absolutely lovely, and although she is working from his inaccurate report, she seems to understand what is going and has done so much for me.

I hope that the next consultant you see is better for you. Sending you healing hugs lovely

🤗