Verneuil's disease AKA Hydradenitis Suppurative

This coming wednesday I go to Århus to see the Doctor there once more. I did not pick up the medication offered. The pain has been so much off the scale over the last three weeks I have been concerned that I may become "acute" and have to be rushed in and operated in any old way as before. Today for some reason there has been a drop in the pain slightly. I really dont know what to say to this doctor when I see him.

Last time we met he said it was risky to have an operation because of the scars and the way they had healed from the previous operations. I did not reply that a French specialist did not find this to be a problem. In fact after looking at me Doctor Guilem said it would take about one and a half hours for everything to be done. The Hammer has suggested I wear my white boxer shorts.

My short spell of wishful thinking had me wondering if the mighty Danes could bring Doctor Guilem to Denmark where he could perform the operation and teach these quacks here a thing or two.

Anyway will post how things go.

I'm sorry to hear you are suffering AWTF. Since you have become "acute", do you suppose taking the antibiotics might help somewhat? At least keep you from going under the knife in Denmark?

For your sake, I do hope/pray they will approve your treatment in France. Let us know what happens. Sending you strength.

Lilou said:

I'm sorry to hear you are suffering AWTF. Since you have become "acute", do you suppose taking the antibiotics might help somewhat? At least keep you from going under the knife in Denmark?

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Sometimes evil drugs can be life-saving and emergency surgery sparing. Take good care and don't suffer unnecessarily.

My short spell of wishful thinking had me wondering if the mighty Danes could bring Doctor Guilem to Denmark where he could perform the operation and teach these quacks here a thing or two.

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Actually, this has been a pretty common thing to do among surgeons. If they are open minded to learn new techniques, it could be arranged for Doctor Guilem to go up there and perform a "teaching" surgery. It is more feasible if you find a Danish surgeon that has been partially trained in France. I've seen this kind of activities often enough to suggest that it is not under the realm of wishful thinking ;)

Away With The Fairys said:

This coming wednesday I go to Århus to see the Doctor there once more. I did not pick up the medication offered. The pain has been so much off the scale over the last three weeks I have been concerned that I may become "acute" and have to be rushed in and operated in any old way as before. Today for some reason there has been a drop in the pain slightly. I really dont know what to say to this doctor when I see him.

Last time we met he said it was risky to have an operation because of the scars and the way they had healed from the previous operations. I did not reply that a French specialist did not find this to be a problem. In fact after looking at me Doctor Guilem said it would take about one and a half hours for everything to be done. The Hammer has suggested I wear my white boxer shorts.

My short spell of wishful thinking had me wondering if the mighty Danes could bring Doctor Guilem to Denmark where he could perform the operation and teach these quacks here a thing or two.

Anyway will post how things go.

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So very sorry Away With The Fairys. Big hug and strength to you. I hate that you have been tortured for so long by these doctors. I hope this visit will bring better results. The pain easing a bit might be from pressure being released by the fistula popping? Again, I feel for you and super duper big hug!

I'm very sorry to see that some people are suffering or have suffered so much from this disease.
I've been having this issue as well. It's never -yet- gone too bad, although there were times that walking was extremely painful. In fact there were times I just couldn't stand, sit or walk. But it goes away eventually.

I have noticed a direct correlation with stress, in my case. Also, I hardly ever get this problem in the summer when I go swimming regularly. It doesn't matter how many baths or showers I take during the winter though, if it's not sea water I don't think there is a noticeable difference in the frequency of occurrence.

I guess I learnt to live with it - I use tea tree or oregano oil on the lesions and focus on alleviating stress, that usually does it although there have been times when they persisted long enough to actually scare me.
Anyway, the correlation with the aquatic ape theory is very interesting, it makes one feel less of a broken thing - outdated is better.

Weird coincidence tonight.

I read a lot of this thread tonight and related to much of it. I never had this disease, as far as I know, and I think I would know based on the horrible descriptions, but reading this thread brought up a lot of painful/shameful memories for me. I grew up in a beach town on the west coast of the US and I was in a bathing suit my entire childhood and adolescence until I left for college. I used to get very large cysts in my groin area when I was a teenager that left large, visible scars and I was hugely embarrassed by this and it deeply affected how I felt about my body and my emerging sexuality because other girls would taunt me with sexually promiscuous insults and my skin was not pretty like theirs. I really related to how isolating and emotionally painful (not to mention physically painful in many cases) any skin disease can be when reading the posts here.

I wasn't going to post about this since my disease, probably staph, isn't nearly as severe but I just took a shower and found a penny size pustule under my left arm pit. It wasn't there this morning and it didn't hurt until I messed with it, but I find it odd that it's there after reading this thread only a few hours ago.

So far I can't get it to drain. Aspirin poultice? Tea tree? What else?

Thanks.

Edit: Feeling exposed here. Not sure I should have posted this.

salinafaerie said:

I wasn't going to post about this since my disease, probably staph, isn't nearly as severe but I just took a shower and found a penny size pustule under my left arm pit. It wasn't there this morning and it didn't hurt until I messed with it, but I find it odd that it's there after reading this thread only a few hours ago.

So far I can't get it to drain. Aspirin poultice? Tea tree? What else?

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If it were me, I’d go see a doctor right away. If it is an abscess and it won’t drain, then these things can get very big, very quickly. Better to get such things properly assessed by a professional as soon as possible, rather than guess and then try to treat it yourself.

salinafaerie said:

I read a lot of this thread tonight and related to much of it. I never had this disease, as far as I know, and I think I would know based on the horrible descriptions, but reading this thread brought up a lot of painful/shameful memories for me. I grew up in a beach town on the west coast of the US and I was in a bathing suit my entire childhood and adolescence until I left for college. I used to get very large cysts in my groin area when I was a teenager that left large, visible scars and I was hugely embarrassed by this and it deeply affected how I felt about my body and my emerging sexuality because other girls would taunt me with sexually promiscuous insults and my skin was not pretty like theirs. I really related to how isolating and emotionally painful (not to mention physically painful in many cases) any skin disease can be when reading the posts here.

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Geez, I'm sorry to hear that you had to go through that, salinafaerie. It must have been really traumatic. :(

I wasn't going to post about this since my disease, probably staph, isn't nearly as severe but I just took a shower and found a penny size pustule under my left arm pit. It wasn't there this morning and it didn't hurt until I messed with it, but I find it odd that it's there after reading this thread only a few hours ago.

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It does seem very similar to Verneuil, from your description of the areas where the boils appear.

So far I can't get it to drain. Aspirin poultice? Tea tree? What else?

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The thing that worked the best for Atreides is a gel called "Osmogel" in France. It is 99% magnesium sulphate. You can find it at the pharmacy, and put a big gulp of it on a bandage, and keep it overnight. It also usually has a tiny bit of lidocaine, which soothes the pain if you have any.

Edit: Feeling exposed here. Not sure I should have posted this.

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I think it is very good that you did. Nobody should have to suffer from this alone. And you posting about it might help others do the same, and find solutions. Just know that absolutely nobody is thinking anything bad about it. You just happen to be another cool "aquatic ape". ;) None of it is your fault. Your body probably wants a cool and wet environment. Lots of baths and gentle scrubbing should help you too.

If they are recurrent, you might want to consider surgery.

And do check the hemochromatosis thread. There seems to be a correlation betwwen zinc absorption (in about 30% of HS cases, a good treatment consists of taking extra zinc), and iron overload. So, after you do some research on it, you might benefit from donating blood once in a while, and having your ferritin and transferrin levels tested.

Ailén said:

Geez, I'm sorry to hear that you had to go through that, salinafaerie. It must have been really traumatic. :(

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Thank you, Ailen. I didn't realize I still had some issues around this until I read this thread. I knew I was still shy about the skin there but......

I never knew about this disease before or the others mentioned. My doctors always just blamed it on folliculitis and it was only later that one suggested staph.

Ailén said:

The thing that worked the best for Atreides is a gel called "Osmogel" in France. It is 99% magnesium sulphate. You can find it at the pharmacy, and put a big gulp of it on a bandage, and keep it overnight. It also usually has a tiny bit of lidocaine, which soothes the pain if you have any.

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I will try to find some. I will do a search now. Thank you. I'm not having pain but it's like my body brought this out for me to talk about it because I haven't had one of these in years and I swear it appeared within hours of me reading this thread!

Ailén said:

I think it is very good that you did. Nobody should have to suffer from this alone. And you posting about it might help others do the same, and find solutions. Just know that absolutely nobody is thinking anything bad about it. You just happen to be another cool "aquatic ape". ;) None of it is your fault. Your body probably wants a cool and wet environment. Lots of baths and gentle scrubbing should help you too.

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"Aquatic ape". I like that. The doctors always blamed them on being too wet at the beach for too long. Can that be? I was very clean though, just to say.

Ailén said:

And do check the hemochromatosis thread. There seems to be a correlation betwwen zinc absorption (in about 30% of HS cases, a good treatment consists of taking extra zinc), and iron overload. So, after you do some research on it, you might benefit from donating blood once in a while, and having your ferritin and transferrin levels tested.

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I will look into all of this. I'm actually working on some health issues for me and my husband and reading the health threads here in detail. It's a lot to get through.

Thank you so much!

Alada said:

salinafaerie said:

I wasn't going to post about this since my disease, probably staph, isn't nearly as severe but I just took a shower and found a penny size pustule under my left arm pit. It wasn't there this morning and it didn't hurt until I messed with it, but I find it odd that it's there after reading this thread only a few hours ago.

So far I can't get it to drain. Aspirin poultice? Tea tree? What else?

Click to expand...

If it were me, I’d go see a doctor right away. If it is an abscess and it won’t drain, then these things can get very big, very quickly. Better to get such things properly assessed by a professional as soon as possible, rather than guess and then try to treat it yourself.

Click to expand...

Yeah, it's really weird how fast this came up. It does seem a little better this morning. I'm going to give it until this afternoon and decide what to do.

Thanks for your concern.

:)

In case anyone is interested.

It's a little better today. I can't easily afford the doctor, so I've been watching it carefully.

Thanks for the support and space to discuss this.

:)

Just FYI, I read in several articles that the so-called "double comedones" or "bridged comedones" are one of the hallmarks to tell between HS and other issues. They look like this:





I called them "multiple follicles" earlier on this thread, not knowing what their technical term was. But if you have those and the other symptoms, then, you can be pretty sure that it is HS.

The only way we have found so far for preventing the infections is to:
a) do hot soaks with magnesium, once or twice a day, before they form any fistulas.
b) not-so-gentle scrubbing on the skin, and sometimes using an expholiating creme.

If that is not enough, when they are deep, then:
c) Removing them one by one, by hand.

It is worth it, when you know what they can do if you just let them be!

Question for those of you who have reported symtoms related to Verneuil, and who are keeping up with the hemochromatosis thread:

How many of you have had your ferriting level tested, and for how many of you was it high?

There seems to be a correlation between both conditions and zinc absorbtion, and I wonder if we can get a better idea from everybody. Supposedly, the zinc protocol (30mg of zinc 3 times a day) works in about a third of the people with HS. Maybe Dr. Guillem would benefit from this, and do more studies, have his patients tested, etc.

Thanks!

Ailén said:

Question for those of you who have reported symtoms related to Verneuil, and who are keeping up with the hemochromatosis thread:

How many of you have had your ferriting level tested, and for how many of you was it high?

There seems to be a correlation between both conditions and zinc absorbtion, and I wonder if we can get a better idea from everybody. Supposedly, the zinc protocol (30mg of zinc 3 times a day) works in about a third of the people with HS. Maybe Dr. Guillem would benefit from this, and do more studies, have his patients tested, etc.

Thanks!

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I'll check my level and report soon, although, my nodule has gone away, fortunately, so I think I'm in the clear.

Thanks for keeping us informed.

:)

Ailén said:

Question for those of you who have reported symtoms related to Verneuil, and who are keeping up with the hemochromatosis thread:

How many of you have had your ferriting level tested, and for how many of you was it high?

There seems to be a correlation between both conditions and zinc absorbtion, and I wonder if we can get a better idea from everybody. Supposedly, the zinc protocol (30mg of zinc 3 times a day) works in about a third of the people with HS. Maybe Dr. Guillem would benefit from this, and do more studies, have his patients tested, etc.

Thanks!

Click to expand...

Where are you reading about the connection to Verneuil and hemochromatosis? I have been watching the hemochromatosis thread and did not make the connection. I am still using my cast iron pans and keep wanting to think this does not relate to me, but mabey I need to look into this more?
After my last go around with all those docs, I really really really hate to walk into an office ever again, even to get my blood checked.
On a side not the only thing that helped with the pain after surgery was a product that contained alot of zinc called calmoseptine.