a personal question for the Ladies

[Liz D.]

Just want to share what has helped me in "that" department.  KY lubricant has now put out vaginal suppositories for moisturizing the inside, not just the outside of the vagina.  I actually found them to be more helpful than the prescription estrogen hormones (Vagifem) and better than Replens.  So I use those plus the outside lubricant when I am "with" my husband.  You can get them at Wal-mart.

Of course, nothing solves the problem completely and I always still have a little burning and bleeding, but it is WAY better with those suppositories than without.   Also, after sex, I immediately get up and clean up (even if I just want to lie there) and make sure I urinate, and then use the Wal-mart brand of vaginal anti-fungal cream down there.  Not the suppository, but just use the cream and put it all around the vulva area.  It cools down the burning after sex and just feels very soothing.  I have suffered with this for many years because of the SJS, but this routine has helped tremendously so that sex is now not a dreaded thing!!

Hope this helps some of you.

[sheenath]

 I AM NEW HERE , BUT EVERYTHING  I READ HERE IS SO FAMILIAR , I  HAVE A LOT OF THE SAME PROBLEMS.

[Linda196]

Hello Sheenath, welcome to Sjogren's World.

Please feel free to post any solutions you've come up with to the various problems you read about.

[beverley]

In danger of repeating everything that has gone before I too have an extremely dry vagina.  I have had thrush repeatedly all my adult life, sometimes for months on end and it only ended after I went through the menopause.  Intercourse has become so painful that we just don't do it any more.  My husband is very understanding, but it does strain our sexual relationship.  I get quite depressed about it.  I was interested to hear that someone also had the urine retention problem.  I have been asking about this (my rheumy) for over a year now and she tests me for infections but I am always clear.  Perhaps I'll try my GP.  At night it can get me up repeatedly - at worse 7 times!  I use an internal cream on prescription called Orthogynest.  It keeps me comfortable but doesn't cure the sex thing.  Sorry not to use the vajayjay term.  I'm not being snooty, just forgot til the end.

Beverley

[Kimi]

As far as coconut oil goes, I get that usually from Wal-mart, it is the cheapo stuff but it works just fine. If I need inner moisture I take a small amount of the coconut oil and insert it. In the summer though or in warm climates it will be liquid so I make the suppositories for inserting and keep them in the fridge. For yeast infections I make them with some powders probiotics in the oil to insert. Hubby and I found the coconut oil the best thing for relations and we both have had lots less yeast rashes down there since we have used it.  ( he would get it from  me) Plus your skin is soft as a baby's bum after too! LOL

For freshening up after sex I use a mixture of 1/4 white vinegar and 3/4 water. Ya can spritz this with a squirt bottle or just wet a wash cloth. this helps with yeast infections, even UTI. I do perfer the squirt bottle method of cleaning as it seems kinder to the skin there??? Rubbing with a wash cloth seems to not work as well for me.

Sissycat, I use a lanolin rich soap made by a lady near here for people with dry skin. It leaves my skin more moist after use. Seems like that and her pine tar soaps are all I can use. She started making soaps after being  sick for many years and learned she was chemical sensitive. She makes laundry soaps and all kinds of goodies that are good for people like us. Not only does her soap have lanolin in it but also has olive oil and coconut oil. I try not to shower every day to help with  the dry skin as well. I have also tried to go the no shampoo way but only get to about the end of the second week before I have to wash my hair. I know ladies who never "wash" their hair with shampoo but use only baking soda or a vinegar rinse and they have the nicest  softest healthiest hair. 

urine retention problem, this I would like to hear more about as I know I have a hard time making my bladder empty. Is this common with SJS?

Kimi

[SassieCat]

Sometimes if I don't drink enough fluids, especially water, I can't seem to get my bladder to empty all the way either.  I dribble and it takes forever to just pee.  But if I drink lots of water I'm constantly running to the bathroom and hope I don't sneeze.  Don't know if the is related to SJS or not.  I have more female problems when I am not drinking enough water.

[mackgirl]

Perhaps not the best thing to say, but how great it is to hear that I'm not the only one with these symptoms. Since being on here (about 3 weeks) i have tried Replens and found it soothes the burning and itching that I get throughout the day.  Finally some relief! I am very lucky in that my partner ( I repartnered recently after seperating from my husband) is EXTREMELY understanding to my dryness and will happily 'apply' lub before during and after sex - how fantastic is he??? After 12 years in the wilderness, I am finally really enjoying sex again.  I treated myself for 'thrush' on and off for years only to now discover that it probably wasn't thrush but dryness.  Thanks heaps guys, I really enjoy reading your thoughts/ topics and taking away ideas to try for myself.

Mackgirl. 

[ohiolady]

I use a compounded estrogen cream called estriol.  Per doctor's instructions, I rub the cream on the outside of the vagina where all the tissues get irritated and on the perineum area which helps the bladder.  I use astroglide for a lubricant and it has been a life saver. 

Anna

[Abbasgirl]

  I can't stop laughing about the grey's anatomy term for that. I've heard some funny ones but that's hilarious.

I had a hysterectomy due to adenomyosis...only the womb removed. About six months later I started going through pain and itching and lots of infections. Then it was only pain and itching. No infections or even a slight sign of one. Not one gynecologist could figure it out except my last doctor. He wanted to try me on an antidepressant to see if it could be neuropathic. I suppose that's it because I am now almost symptom free there. It took a while for it to help. I think it was about 7-8 months. I have to say that my pain wasn't agonizing, but I was really getting fed up with it and the itching. The itching was agonizing with no known cause so we're guessing it was neuropathic. I was on amitryptiline(sp?) and now on Cymbalta.

Now if it would just help with other pains I have! I have read an article about how hysterectomies done vaginally can do damage to nerves so... could be. But there's no certainty. I'm just glad something works!

I too appreciate the openess here. Lol...I needed the laugh today. Thanks.

I hope you get relief and fast. It's an awful place to have any discomfort. I suffered with that for about 8 years.

[grafxmkr]

Ok... I need to chime in.

I am only 35 (as of today, lol).  How about this.  The outside of my girlie parts seems dry to the point that it makes it tender to wipe, but the insides are still... well... juicy.  So, when the juicy hits the dry it actually causes irritation.  As does sitting for long periods of time and walking to an extent.  It is so weird.  It is present on an off depending on what part of my cycle I am in.

To a certain point I suspect nerves since it will actually ache besides contact burning.  Ache down from the girlies to under the butt cheek.  There is no inflammation, reddness, anything.  It got worse w/anti yeast meds and the only relief I get is from liberally applying vaseline.  It is best if NOTHING touches my outter bits.  The inner is just fine.

Doc just kept using me as a guinea pig with ointments.  They made it worse so I went back to vaseline and sleeping w/out my drawers.

I am on 900mg/day Neurontin right now for what I call "arm buzzing" my arms buzz and tingle nonstop with out it.  I wonder if just upping the Neurontin would be a good test to see if it is indeed nerves down there or a skin condition.

[Crabcakes]

Every once in a while I feel the exterior of my female parts is heavy. I attribute it to inflammation of the lymph nodes in my groin. I am only speculating on this. I feel like my underwear legs are too tight. It usually subsides in a few days, but it is an annoyance; one of many these days.

[Prairie Gal]

I've used Vagifem twice weekly for several years now to counteract the thinning of the vaginal tissue.  Since I'm 67 yo and had my ovaries removed 10 yrs. ago (had a suspicious cyst and family history of cancer),  I don't produce estrogen at all.  The Vagifem is helping; my gyn says everything "looks good" in there!

Last summer I had a burning irritation of the outer labia so made an appt. Gyn saw some white patches and did a biopsy to get a tissue sample.  (Yes, it smarts!  Thankfully, she used a very, very fine biopsy needle and did it v. quickly).   The lab result:  I have Lichen Sclerosis, which is not all that uncommon in those with autoimmune problems, I was told.  The treatment:  use a strong cortisone ointment (Clobetasol) twice a day for a few weeks, then cut back.  That was the tricky part, as it turned out.  The cortisone ointment thinned the skin too much and caused bleeding.  I  had used the ointment for only 7 weeks; instructions were to see gyn after 3 months to check on it.  I was therefore told to cut back gradually:  to once a day then every other day, etc., etc.  Now I use the Clobetasol just once a week and dab on Vitamin E oil 3 or 4 nights a week to counteract the outer dryness.  No more irritation, I'm glad to report.  Lichen Sclerosis is a chronic condition  but I find the treatment v. simple.

Praire gal

[Kimi]

I find I am normally so dry in the ladies department that I have to use wet wipes of some kind to wipe or it all sticks to me! Ugh, not fun! Wish I had a boudoir(is that right? I want the thing that sprays warm water on your bum after you are done going). I use coconut oil a couple of times a day just so I do not stick to undies or the TP stick to me! Oh the joys of being dry.

I am going to talk to my GP about the not being able to empty my bladder very easily. Seems i have to sit there and really push to pee. Even then it comes in a small stream and takes for ever. I know I need to drink more water but I usually drink quite a bit as is.

OK another question to add to all this, when you are having a dry flare, do yo find you get dry constipation? I mean it is hard to go!! Not normal for me.

Kimi