Slow and Steady

Posts Tagged ‘Hidradenitis Suppurativa

Have you made resolutions this year?

I’ve said that I don’t have any, mainly because resolutions, to me, are associated with things that never get done. I’ve got goals, goals that I will reach, and extend beyond the year. In a couple of positive living articles that I have read, they’ve talked about doing things one at a time, so you can give yourself and the goal the appropriate energy.

I agree as when I have tried to juggle, everything just dropped! I also think that when working lots of things, as you change your goals may change, so may not want to do something any more, but don’t want to stop because you’ve already put work into it.

Obviously there are things that need to be put into place and be worked on, like a budget and finding somewhere else to volunteer, but most of my energy will be focussed on the main goal.

This is probably no surprise, my first goal is my body.

I need to make my body as healthy as I can.

Food wise I’m going to use 3 day fruit flushes to get my weight down. The fruit flush I’m doing is devised by Jay Robb, and for the 1st day, you drink only protein shakes and in the evening you have a huge salad with a piece of protein. On days 2 and 3, you have fruit every 2 hours until the evening when you have a salad and a protein shake. I’ve done it before as one offs and it’s worked, I’ve lost about 7 pounds each time. What also usually happens is that afterwards I’d naturally add more veg to my plate.

In the book it’s suggested that you do this for 12 weeks for a weight loss program, it says that after the initial one where you can lose up to 9 pounds, you should lose about 2 pounds a week. Not much, but I think taking it slow is better anyway. I’m happy with doing it this way because I like the fact you eat a lot of fruit and veg. I don’t weigh myself, so I’m going to be using my clothes as a guide.

I’m also going to start taking turmeric as it’s an natural anti inflammatory which is good for the joints, and is also good for HS too. I can’t take normal ones any more as they affect my stomach.

I’m going to start body brushing. I have cellulite down to my knees. I’m not sure if it does work, but I have the body brush so why not try? Also, I’ve been reading articles on how not to look frumpy in flat shoes, and a few have suggested wearing a slightly shorter length skirt to give the appearance of a longer leg. I wouldn’t do that at the moment because I’m so conscious of it… Actually I did it on New Years Day, and I was uncomfortable.

Positive affirmations in the present. Things like “I am healthy and happy with my weight”. “I am happy that I fit into my old clothes”.

Try osteopathy -There’s a school not too far from my gran’s house. I’m going to get a friend to drop me as I think I may be sore after. This is going to be one of the last things I do, because I need to budget for it first.

Try to work out an exercise routine that fits in with work.

The next goal will be my phobia.

I have a phobia developed from my accident. I’ll be working on it with C.A.T. My psychiatrist recommended it to me, and I like the idea of this kind of therapy because there is a time limit on the sessions, and there’ll be a  goal. I prefer this than going somewhere every week and just talking and talking.

My next goal is work

By the time I get to this, I’ll probably have been sacked from my current job. I intend to start some volunteer work in teaching, and look for some part time work teaching after I leave the company I’m in. This is all I can say for this right now.

I am going to be setting financial goals, but they are basic. Save, save save.


The cough still hasn’t gone. It’s less painful in my back, and for that I’m very very thankful for.

The weekend was horrid. I couldn’t sleep for more than about 3 hours without waking up coughing. My mum had to help me out of the bed to get to the bathroom because I couldn’t do it alone. A friend of mine phoned me at about 6 in the morning after seeing my facebook status update, and I couldn’t even cry properly because it was so painful.

So where’s the positive bit? Well last week I decided that instead of trying to loose weight in the New Year, I wanted to get to my preferred weight before the New Year. I’ve got a dress I want to wear on New Years eve, and have it hanging on my wall as motivation.

I know I can’t exercise everyday, it hurts my back and neck, so have been contemplating different diets, and even fasting. I used to fast once a year before my accident.

I’ve been given a long term course of antibiotics as my HS (note, link may be TMI for some. You may not want to read it if you’re eating/have just eaten) has flared up again, and wanted to get some probiotics to replace the good bacteria the antibiotics will be killing.

I went to Holland and Barrett, and got talking to one of the employees about wanting to lose weight. She first suggested the most expensive thing of course, but when I refused she showed me Tonalin CLA,which I decided to buy. Here’s some information on it.

CLA is a newly recognised supplement derived from natural safflower oil. CLA or Conjugated Linolic Acid is found naturally in a variety of foods. Over the past decade, however, our changing dietary patterns have diminished those foods high in CLA content. Tonalin offers a rich source of conjugated linoleic acid from the oil of the safflower to supplement the diet naturally.

When you consume fat that your body does not need to use for energy, it is absorbed by fat cells with the help of an enzyme called lipoprotein lipase. CLA blocks this enzyme and diverts unused fat to your muscle cells. The CLA then activates another enzyme which helps your muscle to burn this fat, especially during exercise.

That’s why, when used in balance with a healthy diet and regular exercise program, Tonalin® CLA is so effective in helping you lose body fat, and keep it off.

Because it is so effective, Tonalin® CLA can also help eliminate the unhealthy “yo-yoing” pattern of losing and gaining weight. Clinical studies have proven that Tonalin® can prevent fat regain.

Since I’ve had this cough, my body doesn’t want food at all. Even tea is too much so I’ve just been drinking water. It’s like I’m fasting, and I’m loving it. It feels like my system is having a complete rest. I’ve been sleeping, reading, doing the very basic of stretches, and listening to music. When I try and have a conversation I end up in fits of coughs so I’m not answering my phone. I’m in my own little retreat. As I get better, I’m going to continue having just water, then increase my stretches. I think this is going to get me into my New Year’s eve dress!

I gave myself an angel card reading a few weeks back and turned the messages in screen savers. One in particular describes this situation perfectly.

I certainly didn’t expect to lose weight by having a cough!

Negative in positive. Loving it, and thanking God for making it possible.

When I was diagnosed with hidredentis suppurativa I was put on a 2 month course of antibiotics to see if it would work. Now these pills had a very welcome side effect. All the spots I had cleared up. I didn’t change my skin care routine, and all of a sudden, my skin was completely spot free, and perfect looking.

The course finished about a month ago, and the difference in my skin is amazing; not in a good way. I’ve got about 15 whiteheads on my face right now including a really painful one on my nose (I’m sure I’ll laugh about it in about 10 years time!) and part of my forehead looks like I’ve got a rash. I’ve done absolutely nothing different apart from finishing the course of antibiotics.

Now I know that good skin really does start from within, I’m motivated to restart taking my msm. When I took it regularly, my skin looked amazing.

Since I started menstruation at 9 years old, I’ve had a problem that I never even told my mum about. About a week before my period I get a boil on my vagina area that is very painful and gets bigger and bigger as the days pass.

Eventually it either bursts and releases pus and blood, or it just goes down. This will always happen by the time my period is over. Over the years it has come and gone, sometime being as big as an egg. I used to use a sterilised needle and prick it to get relief from it.

The skin around the area is awful, there is a lot of scarring

I’ve seen many doctors, they usually give me antibiotics, and tell me it’s an inflamed hair follicle, but this never made any sense to me because it was always around my period, which makes me believe it’s hormonal.  No-one has ever really questioned it further and folliculitis has been the reason written in my medical notes. A few years back a doctor told me to stop shaving as it was probably the problem.

I used hair removing cream and the problem still existed. The doctor then told me to stop removing hair full stop which I did and the problem was still there.

Over the past few months, there has been a big change.

3 months ago, the boil did not go down by the end of my period. 2 months ago another boil came up right next to the other one, and didn’t go down either.

I started searching online  for ideas of what it could be and a discussion on a women’s health site made me look into hidradenitis suppurativa. As I was reading the experiences from other women, I felt like someone had written my story down. I went to my doctor, and said I suspected this condition and that these 2 boils are very painful.

He said that HS usually appears in the armpits and he hasn’t heard of it being in the vagina area before. He gave me some antibiotics and sent me on my way. I didn’t ask him to have a look, as I still don’t like being examined by a male doctor.

Well I finished the course last week and not only were they still there, but they were now open wounds. It hurt to wear underwear, and was really really itchy. To top it off another one has started forming as I’m due on my period soon.

I managed to get an appointment yesterday with a female doctor and walked in with no underwear on, lifted up my skirt and asked her what the hell was going on! She had a look, and then said I have HS.

I nearly cried with relief, finally someone has given me a name. She gave me some strong antibiotics that will help the ones I have, some magnese sulphate paste to dress the area, and then I have to take a long term course of antibiotics to see if it will kill the bacteria that causes HS to form. I’ve been given 2 months to start, and if it works then I will have another 4 months of the to take. She was glad to hear that I wash and dry the area with a different flannel/towel as she said while the condition is not catching, the pus can cause boils in other areas too.

When I asked her what would happen if the antibiotics doesn’t work, she said surgery. That shocked me so I came home last night and started to research this condition.

There is no cure.

Apparently it is always mis-diagnosed (as I know) and people feel too embarassed to speak about it, so there has not been any real research done into why people get it.

I’m really upset that there isn’t a cure, but I have found some treatment ideas on some of the support sites I have found. I will work my way through them to see if they will make a difference.

This has got me thinking about the potential results of my back and neck pain. It feels good to have a name, but what if there is no cure? I still think knowing what you have is better because you can try treatments that are supposed to work for your condition and can have a support network.

Here is the information from the British Skin Foundation

What is hidradenitis suppurativa?
Hidradenitis suppurativa is a chronic and stubborn disease centred on inflammation of the large specialised sweat glands (apocrine glands) that are found mainly in the armpits and groins. These areas show a distinctive mixture of boil-like lumps, areas leaking pus, and scarring.
What causes hidradenitis suppurativa?
It is still not clear why the apocrine sweat glands are affected like this in some people, but mechanical blockage plays a part. As the secretions cannot escape, the tubes containing them may swell up and burst, or become infected.
Contributory factors include the following:
Hormones are involved in the control of apocrine sweat glands and certainly play a part in the disease. Hidradenitis suppurativa affects women more often than men. It does not start before puberty or after the menopause. It may get better during pregnancy, but is often worse before menstrual periods. Some patients do well with hormone treatments (see below).
Bacteria play a part too, but a variety of germs, and not just one special type, is found in the spots. It is not clear whether they cause the disease, or just flourish within it.
There may be a link with acne.

Is hidradenitis suppurativa hereditary?
Hidradenitis suppurativa sometimes runs in families, and some patients or family members may also have had bad acne, or a chronic abscess at the base of the spine (a pilonidal sinus).
What are the symptoms of hidradenitis suppurativa?
Hidradenitis suppurativa can be itchy, but is usually painful, and the lumps hurt if they are pressed.
What does hidradenitis suppurativa look like?
The severity of hidradenitis suppurativa varies from person to person. The main areas to be affected are the armpits, and the skin around the genitals – in the pubic area and in the groins. The skin around the back passage, on the upper buttocks and thighs, and below the breasts, can give trouble too.
In these areas, the skin shows a variable mixture of blackheads, red lumps looking like boils, pus spots, cysts, and areas that constantly leak pus (sinuses). The abscesses can even burrow into nearby structures. As time goes by, more and more scarring appears.
How will hidradenitis suppurativa be diagnosed?
The diagnosis is made clinically, taking into account the areas that are affected, and the look of the spots. Your doctor may take swabs from the area to see which type of germ is present.
Can hidradenitis suppurativa be cured?
No, it usually persists for many years, but may disappear eventually. Treatment usually helps even though it cannot switch the hidradenitis off once and for all.
How can hidradenitis suppurativa be treated?
There are many ways in which your doctor can help you with your hidradenitis suppurativa. In general terms, early hidradenitis suppurativa is usually treated medically, whereas hidradenitis suppurativa that has been going for a long time may need surgery:
If hidradenitis suppurativa suddenly becomes worse:
This may be due to an infection with ordinary germs of the types that infect cuts and grazes; so antibiotics such as flucloxacillin may be used as a short course.
Frequent episodes of this type, with proven bacterial infection, usually mean that you have a sinus or abscess (see treatments below).
Suppressive therapy:

Antibiotics by mouth, taken are long-term, help to suppress attacks. The ones that are used are the same ones used for acne – such as oxytetracycline. They are sometimes put on as topical applications.
Other anti-acne drugs such as isotretinoin (vitamin A derived tablets) may help too, but have important side effects and are available only from dermatology departments.
For women whose hidradenitis suppurativa flares before each period, tablets known as antiandrogens can be useful. The usual one is cyproterone acetate, 50 mg taken on days 5-15 of the menstrual cycle in conjunction with an oral contraceptive called Dianette. It cannot be used for anyone with a tendency to have high blood pressure or to form blood clots.
If the disease is severe, stronger drugs including oral corticosteroids may be used but all carry the risk causing of side effects.

Treatment of scarred sinuses and abscesses:

Persistent discharge or infection in the same site usually means that the medical treatments listed above will not work, and surgical operations – either to remove small areas of repeated inflammation, or wider procedures to take away all the diseased glands – are needed in some cases. In general, hidradenitis of the armpits does better with surgery than hidradenitis in other sites.

What can I do?
If you are too heavy, you will need to lose weight.
As with many other diseases in skin folds, friction makes hidradenitis suppurativa worse, and should be avoided.
You should wash with antiseptic soaps or bath additives.