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Sjogrens Topics => Living With Sjogren's => Topic started by: eye2dry on October 09, 2019, 09:01:13 PM

Title: Women stuff---vaginal problems
Post by: eye2dry on October 09, 2019, 09:01:13 PM
Hi ladies.

As you know sjogrens makes everything dry. I would like to know what any of you have tried
As an RX or OTC to combat vaginal dryness. I have been checked by nurse practioner and it is not
a UTI per lab culture.  So, I have made appt for Friday to see Gynecologist.

In my past, vaginal irritation was bad so she RX premarin cream, didn't seem to help only burned.  if it is
Indeed vaginal dryness only, what is there out there that works? I am 61, periods stopped at age 47.

My symptoms are:

Frequent urination
Leaking of urine at times
Vaginal, urethral and labia burns
No discharge, no odor
Burning after urinating.
Painful sex, even using lubricant.


Title: Re: Women stuff---vaginal problems
Post by: araminta on October 10, 2019, 04:15:23 AM
Yes yes yes products are good.   Avoid harsh soaps, hot water.   Your gynecologist may suggest oestrogen based creams.
Title: Re: Women stuff---vaginal problems
Post by: Liz D. on October 10, 2019, 06:21:11 AM
Hi Shelly,

I understand your problems!  I have personally found that Replens Vaginal Moisturizer has helped me.  You can get it at any drugstore.  If I use it weekly, I can generally stay on top of the extreme dryness. 

But for general dryness, I actually use Aquaphor ointment.  It is soothing and sure helps with the chafing that can come from toilet paper.

Liz D.
Title: Re: Women stuff---vaginal problems
Post by: irish on October 10, 2019, 01:45:21 PM
I have been given Estrace estrogen cream to use 3 times a week. My doc told me it takes 6 months to see thee good response, Yikes.

There is a K-Y jelly personal lubricant found in most stores and cheapest at Walmart. It is a odorless, clear water based product that does help. But, You almost sound like you are having an allergic reaction to something. Have you tried using Lux liquid soap to wash your undies. My hubby had allergies and I had to wash all his clothes in liquid lux for several years before he got over the itching and rash. You night want to try using Cetaphil soap and lotion for bathing. This is non allergenic and very mild.

Talk to pharmacist at Walmart and then walk over to the over the counter products. You will find Cetaphil and then you will find Equate product that are pretty much the same but cheaper. Also, have you considered that you may have a medication that is excreted in stool and urine that could be causing this. Darn, but it is hard solving these problems isn't it. Good luck. If you find the culprit please let us know cause it could help someone else.

It just occurred to me that some people have reactions to urine and stool that is caused by the acidity of bodily fluids. Maybe try cleansing with plain warm water or sitz baths, pat dry and apply Maalox or another oral stomach product. These products are used on the skin of people who have colostomies and it helps draw the rawness out. The Maalox is more alkaline and this soothes the skin. Worth a try. Also, After drying the skin and patting the Maalox on the areas it helps to let the areas air dry or dry with hair dryer on air or low and not close to the skin. When the Maalox dries then it works better. It will stay put in place if it can be dry and helps heal the areas. Good luck. Irish
Title: Re: Women stuff---vaginal problems
Post by: eye2dry on October 10, 2019, 05:54:43 PM
Never knew about soothing maalox.....thanks for the tip on that Irish., I am going to use it at bedtime tonight. I have been not Getting comfortable enough to stay aslerp.

Liz, I have aquaphor and know that it will stay on skin real well and not rub/run off easily.
I did order Replens from Amazon last night but it will take a week to get it.

 I have to wait till this Tuesday to get help from Tyne.  It's miserable trying to sit still with this burning.
Just out of the started...No gradual creeping up symptoms...

I think about 18-20 years ago I went through something like this. Vaginal swabs clear, urine clear. I had to have
Cystoscopy, abdominal CT, no dx ever given. Tried so many meds by 2 Drs, not sure if any cured me, I
think it eventually might have run it's course. I had periods back then.

Grrrrrrr......women's anatomy seem to me,,,not laid out right.


Title: Re: Women stuff---vaginal problems
Post by: Carebear on October 10, 2019, 06:32:45 PM
Hi Shelly,

I've suffered for over two decades from severe vaginal dryness.  It's one of those topics we rarely discuss.

I use Vagifem three times a week as per my doctor's prescription, and each day I use Replens.  My doctor told me that Vagifem will help prevent UTIs as well.

Thanks to this routine I am somewhat comfortable. Good luck to you.
Title: Re: Women stuff---vaginal problems
Post by: Deb 27 on October 11, 2019, 01:56:28 PM
I would try one of the lubricants to keep the dryness down like others suggested here.  The estrase creams did the same to me until I got on a systemic estrogen patch.  That helped me a lot and helped with the UTI's I was having. My estrogen vales were very low!!! Vaginal estrogen is still best for the dryness but I feel like the patched helped to the point that I was no longer burning constantly down there.

Also, there is a new vaginal suppository called Intrarosa that is not estrogen. It's DHEA and coconut oil. You might tolerate that better.

Did you get checked to make sure you don't have an infection, like a yeast??

Also, another thing is that compounding pharmacies can make estrogen vaginal creams and put them in a special base for you.

Good luck. I hope you find a solution!

Title: Re: Women stuff---vaginal problems
Post by: irish on October 11, 2019, 06:49:02 PM
The one thing that I think women don't know early enough in life is that low Estrogen can sure ramp up the urinary track infections. I have suddenly become dryer from my Sjogrens in every area there is and the vaginal dryness is terrible when one has urinary incontinence.

I did some searching and ended up on a site that dealt with urinary infections in people with paraplegia and quadriplegia. The one thing that was causing a big problem with people with these issues is that wearing the pull-ups and pads with urinary incontinence. These pads cause friction on the urethra in women and kick up the infections. The first thing I did is went out and bought several different types of pull ups and pads to see if I could find some that were less irritating. I found the Depends is much softer and better absorption but they are more extensive. I have have found more pads to wear with the pull-ups that work better.

You know when one has Sjogrens we have so many issues to address in our daily living that we have to lie down and take a nap!!! Irisih
Title: Re: Women stuff---vaginal problems
Post by: eye2dry on October 11, 2019, 08:45:26 PM
More thoughts on all this vaginal dryness.

In past I was RX premarin vag cream. And it burned. My gyne. Said to put in my urologist said to put
It on labial area.

I have this my drug handbook it says premarin (other hormone creams as well) should be used
In the smallest amount for the shortest amount of time to get your relief. Wouldn't after stopping it later get you
Right back where you started.

Are any of you on it for years?

I am trying to educate myself on this before my gyne. Visit Tuesday.

Title: Re: Women stuff---vaginal problems
Post by: ohiolady on October 11, 2019, 09:02:24 PM
I use a compounded estrogen cream every day. I rub it on labial area as your urologist suggested. My doctor also gave me a steroid cream to be used sparingly. She said I was having autoimmune reaction. I think it was called clobestol so is not correct. Try googling it. I am out and need a new script to keep on hand.

Hope you get some answers.

Title: Re: Women stuff---vaginal problems
Post by: irish on October 12, 2019, 06:58:39 AM
I don't know how long we can use it but 1/2 applicator 3X a week doesn't seem like a lot. My urologist ordered mine as he said I was so low on estrogen and dry that it was causing my urethra to be dry also and I was more susceptible to the bacteria. My internist told me to make sure to get a good amount of the cream right over and around the urethra to help decrease the dryness and then the rest goes some on labia and the rest in vagina. It goes on and in fast with only 1/2 applicator. At my age I am not worrying about how long I use it. Irish
Title: Re: Women stuff---UPDATE
Post by: eye2dry on October 17, 2019, 08:58:17 AM
Hello ladies.

I saw my gyne. On Tuesday. Got a pelvic exam, she took cultures, listened to me.

Her dx was vaginal atrophy,  she RX Estrace cream 0.1% to use pea size amount into vagina
nightly for 2 weeks. Then reduce to 2 X week at night from then on.

Wednesday got call from office nurse that a culture came back for BV (bacterial vaginosis), so now
I am using metro gel vaginal nightly for 5 nights. I had this dx once before but except for pain I had no
other symptoms this time around. I guess the bad bacteria out numbered the good.

Anyways, don't feel much different despite 2 doses of estrace cream and one of metro gel.

I go back in 6 weeks for a recheck.

Ha ha.....for such a small space, there's a lot going on down there and non of its good.

Title: Re: Women stuff---vaginal problems
Post by: irish on October 17, 2019, 12:56:53 PM
You have the usual  for post menopausal women. Plus the vaginosis. My urologist put me on the Estrace to help prevent urinary infections. It is to increase moisture in the urethra and vaginal area which helps to soften the tissues. He said it takes several months to see the results of the change in tissue. I had been on the Estrace for several years per my internist but didn't dod it per orders. Silly I know better.

Men get prostate problems and we get this. Hope you get to feeling better. Irish
Title: Re: Women stuff---vaginal problems
Post by: lorigacc on October 24, 2019, 06:40:49 AM
Just a quick note. I also struggle with the extreme dryness and pain. Because I have had problems with my anticardiolipids and blood clotting, I cannot use any type of hormone cream. If you have had clotting issues, please make your gynecologist aware of this before asking for a prescription to help with the problem.
Title: Re: Women stuff---vaginal problems
Post by: irish on October 24, 2019, 09:20:52 PM
That is something our pharmacist should know about also. They need the propensity to have blood clotting issues on hand so they can keep track of our meds and side effects, etc. Irish