Lymphovascular lesion

[ssc123]

Hello all,

I’m wondering if anyone has had any experience of lymphovascular lesions and how it presented and was diagnosed.

My young daughter (11 years) has primary lymphoedmea of her lower body including her pubic mound. Last year she was also diagnosed with lymphorrea. A great MCT diet has controlled the lymphorrea to the point where it is nonexistent unless she eats too much normal dietary fat. Once this was controlled it became obvious that she was also passing blood which has no pattern or regularity. This has continued for about 3 years now. After multiple referrals and diagnostic tests it was decided that it was premature menarche.

I was very doubtful of this diagnosis and so was her endocrinologist due to the lack of patterning, the amount of blood and her current stage of development. After seeing a new urology doctor she suggested that this actually could be lymphovascular lesion of the uterine or vaginal track. She has an MRI scan booked for August but I am a little concerned because the last few days the volume of blood had massively increased. I will obviously call the urologist tomorrow for advice but I was wondering if anyone on here had been through anything similar?

Best wishes x

[Lynora]

Has your urologist spoken to Professor Mortimer?

[ssc123 in reply to Lynora]

No, we are under dr Gordon at St George’s as Professor Mortimer is semi-retired. I have discussed the blood with dr Gordon on previous occasions (before the urologist suggested lymphovascular lesion) and she felt that the blood and lymphorrea were two separate things and her paediatricians (completely different hospital) should investigate the blood separately which is what they have been doing. At no point did she suggest that it could have anything to do with the lymphatic system. The urologist was trained in Australia where apparently they incorporate lymphatic abnormalities as part of urology, which is different to here in the uk, so for once we have stumbled across a doctor who has a good awareness of the lymphatic system. Unfortunately though the doctor is not in now until Tuesday when we will hopefully be flying to escape this heat! It quiet sure what I should do next.... apart from the blood my daughter is her usual spritely self x

[Lynora in reply to ssc123]

What about gynaecology? Do they have an opinion?

[ssc123 in reply to Lynora]

Yes they were the ones that said it’s premature menarche. That diagnosis is based on the fact that they have ruled out other gynaecological problems such as menstration, blockage, infection etc rather than certainty that it is. But both the endocrinologist and urologist disagree with that diagnosis and feel there is more too it. Somehow nearly all of my daughters issues appear to link back to her lymphatic system so I’m wondering if the urologist is onto something.