Is there a link between lymphoedema and hidradenitis?

[millie1]

Hi. I am new to the forum but have had lymphoedema for 10 years. At around the same time I first noticed my lymphoedema, I also started suffering with hidradenitis. I have read that the cause of this is to do with an inefficient immune system. I wondered if anyone else had similar experiences at all?

[Christo]

I found some info which may be helpful - curehidradenitis.com/home-r... ask your Le nurse too.

Goodluck.

[LymphSuppNetwork Partner LSN]

It is not a condition that has been identified as having an obvious known link Millie and we are obviously not in a position to comment on individual cases but any condition that causes chronic skin changes may have some effect on the superficial lymphatics - talk to your therapists or dermatologist about it.

[gavinlwright]

I too have sufferred with HS since puberty and have only in the last few years been diagnosed with Lympoedema. I have asked the question and allthough there seems to be some general consensus that there is a link i can't find anyone who has researched it properly. My Doctors and specialists have not ruled it out but there again have not fully committed.

I think it is another of the things we are expected to live with, it took me over 20yrs to get my HS diagnosed !

My understanding of HS is it is due to problems with the sweat glands rather than a poor immune system and the glands getting blocked etc. It can however lead to deep scarring and this is likely to be why there is a possible link to lymph. A good dermatologist should be able to help you with the HS.

Good Luck

[millie1]

Thanks everyone for your responses and guidance. Unfortunately I do not have any expert support; the GPs just put me on antibiotics if I talk to them about my HS and the lymphoedema clinic aren't aware of HS symptoms. I do find if I don't have bread (yeast) then both my lymphoedema and HS are much better, so I'm going down this route at the moment.

[Emma1966]

I have had HS I suspect for the last couple of years, right in the groin area which is awful.

[gavinlwright]

Following on from this i saw my dermatologist this week about my HS he seems to think there is not a link to le but explained the condition is down to a genetic problem with the glands in the skin not forming correctly hence they are then more prone to sebum collecting and then infection resulting in boils, cysts and abscesses. He said there are four conditions that link to this acne, folliculitis, pilonidal sinus and hs. Lucky me i have had all four and still suffer. He is going to put me on a course of roaccutane which if you read about has some horrendous side effects. I did have a course some time ago and it helped immeasurably. So much so that i was actually able to wear light coloured clothes again for a while. Those who suffer will understand. It is only a consultant dermatologist who can prescribe this drug and it is only a last resort. If you feel you are suffering from hs then it is worth getting a refferal from your gp and i had to push hard but was so glad i did as the result was worthwhile. Good Luck.