Monday, April 11, 2011

Sjogren's secret - the dryness we don't talk about... HAWMC #10

Sjogren's Syndrome is an autoimmune disease in which the immune system mistakenly attacks the exocrine glands of the body.  Exocrine glands are those tiny little glands we don't usually think of, but miss very badly when they stop working, because they keep our moist areas moist - our eyes, mouths, sinuses, lungs, skin, digestive and reproductive systems... everywhere there are mucus membranes or moisture glands.

The secret problem Sjogren's patients all know about but don't like to talk about is personal dryness.

I'm a very open person.  I've been so profoundly affected by my health issues that I actually figure I don't really have anything to lose any more by talking about them.  There's not much I won't discuss if there's a good reason to talk about it.

I've had people contact me about this when I've mentioned it on boards, but rarely will anyone talk about it in public.  So, I'm going to break the barrier and talk about it here, because I'm hoping other Sjogren's and autoimmune Health Activists will take the information from this post to their groups and get some discussions going.

I don't want anybody blushing while they read this, so I'm just going to come out and say that most of us are either male or female.  If you don't have one body part, you have the other, so we should all be used to talking about these things. So fair warning - I'm going into some detail here...

Mucus - it's an icky word that conjures up visions of slimy green stuff in a tissue.  *Gak*  But mucus is vitally important to our bodies.  Mucus keeps delicate tissue hydrated.  It acts as a lubricant and as a protectant.  Without moisture in our mucus membranes, our eyelids would stick to our eyeballs, our tongue would grow hard like cardboard and our teeth would fall out. We wouldn't be able to digest our food, and malabsorption would eventually result in disease or our death.

For women, these membranes play a vital role in our lives in other ways. When our mucus membranes are well hydrated and working properly, we can walk without pain because tissues that move with our bodies are lubricated.  We don't notice this during the day because our body is working correctly and we don't feel pain.  When we become sexually active, these membranes make it physically possible to have sex - without this lubrication the tissues are very thin and tear easily.  What was designed to be a pleasing experience can be excruciating.  These hydrated and lubricated tissues keep the vaginal and vulvar environment properly balanced.  Bacteria is kept in check as are yeasts and other normal flora present in every person reading this article - male and female.

When these tissues dry up, they become even thinner and more sensitive.  They move against each other as we innocently go about our day, and with nothing to eliminate the friction, painful sores can develop.  The chemical balance is broken and the environment becomes a very pleasant place for bacteria and flora to prosper and grow.  This causes even more pain.  Our body's cleaning system that would normally flush out these harmful bacteria and flora stops working.  The bacteria and flora are not eliminated and begin to happily populate  wherever the slightest moisture remains.  With nothing to flush them away, we may not even be aware there is a problem.

The vagina, which is a normally very happy place, becomes very unhappy.  The vulva, normally a slightly moist, healthy pink becomes inflamed and red and angry.  Wearing clothes can be difficult.  Simply walking can become a test in willpower.  Urinary tract infections can become a normal way of life.

Unsuspecting doctors tell us to simply go and buy a bottle of lubricant and use it if the areas become painful.  They don't understand that no water based lubricant can replace the missing natural lubricant that was made for our bodies.  Some women are faced with pain so severe that sex is almost impossible.  Relationships suffer, even break apart completely when the partner is unable to understand the problem, or is unwilling to work around it.  Patients themselves can become so afraid of pain during sex that they end relationships in order to avoid it.

Some lucky Sjogren's patients don't suffer severe personal dryness, and OTC lubricants are sufficient.  Applying them externally once or twice daily and before sex may be enough to maintain comfort.

Some lucky Sjogren's patients do suffer severe personal dryness for which OTC lubricants are essentially worthless.  If these women are old enough to have become menopausal too, the problem is compounded.  Many of them can find relief with vitamin E oil applied when needed and before sex, but unfortunately most doctors don't think or know to tell them this option! There are other non-water based lubricants that can be helpful, but because they can clog the few moisture producing glands that are left, these should be left for times when extra lubrication - like during sex - is needed.

Certain techniques are also valuable to learn.  Not washing away what little natural lubrication is present just before engaging in sex is important.  An extended 'warm-up period' just before sex may also be helpful, but may be lost on the patient's partner, so maintaining open conversation about what works and what doesn't arouse the patient is really vital.  Warming the core temperature of the body enough to create sweat is also sometimes helpful - even placing a heating pad on the abdomen for an hour or two before activity can be advantageous.  

Some women find that using a female condom during sex will cut down on the friction that causes pain and tearing, but lubrication is necessary for their use as well.

I have a few of my own favorite products that I don't mind sharing here, in hopes it might help someone else who doesn't have a great doctor to give them their best options.  My top three are:

Vitamin E Oil- the cheapest and can be purchased by the bottle.  Use as much as is necessary for comfort. Some days you may need just a little, some days may require a whole lot.  This is also useful in combination with other products and techniques.

K-Y LiquiBeads - these can be inserted an hour or a day before sex, or used daily for comfort.  The lubricant is different from their regular product.  They are not necessarily widely available (I get mine at Walgreens when they carry them).  If you are extremely dry, they will not dissolve and release the lubricant, but rinsing them liberally with water before insertion or coating them with regular lubricant can be helpful.  Beware, they are messy (you'll want to have a pad handy), but very effective even in extreme cases. These may be discontinued, I'm looking for additional information at this writing.  All I can find right now are at exhorbitant prices, so I will contact the company soon and keep this page updated.  I'll be treating my last 6 like gold.

Very Private intimate moisture - I got this from Hyster Sisters and tried it with many doubts.  It is the best OTC product I've found other than the K-Y moisture beads product.  I use it alone and in combination when necessary.  It is the most expensive of the three products.

Comment by Nancy on April 11, 2011 at 8:28am
OMG! Thank you...
Comment by JordanB on April 11, 2011 at 1:05pm
I appreciate you going there. You did so in an open and direct manner that I think people will appreciate. I only smirked once ("The vagina, which is a normally very happy place, becomes very unhappy."). There's a lack of frank discussion like this, even in the sexual health section of WEGO Health. Every little bit helps, great post!
Comment by Ellen S on April 11, 2011 at 3:56pm
Jordan, lol - yes that's a joke in our house - "Just call me Frank!"  speaking openly can be off-putting at times, but if someone benefits from it, then it served a purpose.  I'm all about purpose :)
Comment by Alicia C. Staley on April 11, 2011 at 8:16pm
Ellen, Thanks for sharing.  This is an important issue in the breast cancer community as well.  Many women suffer from early on-set menopause,  immediate menopause (due to surgery) and a host of other issues related to changes in estrogen levels.  I will certainly share this post.  Alicia
Comment by Ellen S on April 12, 2011 at 3:52pm
Thank you Alicia!!  <3
Comment by Martha Wallace on April 13, 2011 at 10:58am
Thanks, Ellen. I have tried discussing the issue with 2 different nurse practitioners with little help from them. Thanks so much for your helpful post. Your purpose has been served. :)
Comment by Martha Wallace on April 13, 2011 at 11:10am
Also: my dermatologist prescribed acidpholus and while it does not help the dryness it does seem to help cut down on the secondary infections.
Comment by Ellen S on April 13, 2011 at 8:26pm
Martha, While I don't use acidophilus per-se, I do both use probiotics as well as tell others about using them too.  I wish I could say their use has cut down on the number of infections - especially the chronic bronchitis I've had now the last few years - but research says that it does.  Who knows - maybe my probiotics are keeping me from being flat out in bed with pneumonia.  I'm grateful for whatever they can offer me :)
Comment by Kim on April 15, 2011 at 1:25pm
Thank you Ellen!!! I have talked to several doctors and get very little understanding.  I have been married for over 37 years and had enjoyed a very full sexual life with my husband.  The last 3 years have been so difficult but my hubby is empathic.  Sjogrens disease has taken away that part of my life.  I have used vitamin E for quite awhile but not helpful for actual intercourse.  My doctor also started me ( I'm way pass menapause) on estrogen lotion in vaginal.  I find it doesn't help much either.  I will try the third product you advised.  Thank you for bringing up such a sensitive topic to all of us silent sufferers.  May God Bless YOU!!
Comment by lostbcgal on April 15, 2011 at 1:29pm
way to go Ellen! You said what needed to be said and written down once again!! Good girl! So many people are so uneducated on sjogrens. Including some of us who have it.In fact it seems every ER trip I'm always educating the nurses&Dr's about it!Very sad,but at least at my local ER they see me coming and many more now know "oh,the lady with sjogrens,lupus&fibro"is here.Awareness is definitely the key.

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