Well this is a fun question to ask... Imagine trying to ask a MALE Doctor?? Okay, my vajayjay hurts all the time.. I keep thinking I have a UTI, but once they test me it comes back fine.. I can use the bathroom fine, but that area burns alot and feels like it weighs a ton.. I know this is an odd symptom, but my Gyno says it is probably from the SjS and being dry all over.. :'(
Does anyone else have this problem?
Also, what is the long term effects of SjS? I often wonder, will my insides just dry up? Will I just turn to dust one day? (okay I know that won't happen, but you know what I mean)... ;D
Thanks ahead of time for your help...
First off, vajayjay is a hilarious word and you are darling for using it!
I don't know the answer to this but am having the same sort of problem along with pain during orgasa-jayjay! Like a drawing pain that seems kind of the same as the pain I get in my salivary glands when taste something tart.
I have been wondering if hormone replacement would help me with this.
Ugh, I hate this so much. And I hate more than anything trying to talk to the doctor about it.
I've had a couple o' problems in that area. The first (and ongoing) is constant yeast infections. When you mentioned burning, well, that told me that was a possibility. The other is the dryness, and that I fixed with Replens. The thing about Replens is that you have to take it a few times before your body adjusts and starts doing it for itself. I am now on Cyclomen (Danazol) because my periods were about 3 weeks long with maybe 5 days before the next one started (!) so now I don't get one at all. I am pretty sure it helped my vajayjay as well! And ya, I love that term!
Hope that helps! ;D
I have had this "issue" on more than one occasion. There were two things I found out:
1. I went to my gyne and she tested for yeast and all of the other things....I had nothing show up positive on any of the tests, although she did tell me its not unusual for the vaginal membranes to change and become thinner and dryer due to inflammation etc.
This happens due to age and/or when our estrogen levels are low for other reasons. Since I had a complete hysterectomy years ago...this made sense to me. It can be treated if needed by hormone creams, but I chose not to at this time. A general lubricant was suggested if I felt too dry or had pain.
2. The second problem I had was that although I constantly felt like I had a UTI...my UA's were coming back showing some things slightly off, it was not enough to be classified as a full blown UTI. I did have one many months before this and was suffering with problems of always feeling like another one was coming on. I also found out that my bladder was retaining urine even right after I just went to the bathroom thus adding to the problem of a possible infection being able to brew in there.
With input from my rheumy, my Urologist put me a 6 month low dose antibiotic and this worked wonders for me! It was probably a low grade infection that just wouldn't go away entirely with one or two treatments. That makes sense to me as well since our bodies don't fight infection that well...and it was just enough to make me feel unwell and in pain, but didn't show up as bad as the doctors were used to seeing on the lab results.
After the bout of antibiotics...I have been doing pretty good....this is just my experience...I hope you find some answers as well as relief very soon....I know how painful and uncomfortable it can get...and its No Fun!
I suppose I am the only one with to much moisture in my vajayjay. I'm not sure why I have it and either does the doctor.
That is the only place I have moisture, though... I also realized after my hysterectomy, that I have vajayjay atrophy, which only some women get....I used to be prone to yeast infections. I have had them since I was a teenager and got used to wearing cotton only underwear..then I read on the internet that sugar aggravates the yeast. I also limit my intake of yeast products.
My Gyn gave me a hormone cream for the vajayjay atrophy, but I'm not regular with it...as I 'm not used to taking all these different meds for the SJS...so I can't tell you if it works..
I hope that you get relief soon, as it's not fun at all and can be wearing like the SJS....
Some days, that fatigue just wears me out....
Take care, Kathy
Hello, My name is Julie and I live in Southern California. All the things you have mentioned thus far has happened to me. That heavy feeling in the vaginal area is something out of terrible nightmare. The feeling of fullness, the burning, the inability to urinate completely, etc. and the feeling of malaise most days, terrible. All I could do was drink lot of water to flush things out, wash after the bathroom with warm water, take cranberry extract capsules three times a day, urinate after sex and other activities, eat lots of vegetables, and drink some more water. I feel I am going to float away anytime soon.
My gyn told me the vaginal atrophy goes along with the mucous membranes inside drying up. Living with Sjogren's really suckis. One can never really feel comfortable most of the time. Yesterday I thought my day started out really well and by 3:00 p.m. the flu like symptoms started.
Aside from being saddled with all the SJS symptoms, I am still struggling with my periods and I am going to be 59 this August!
It is sometimes discouraging but I find that if I really try my best to enjoy the good hours within the day and laugh things off (when I am nut hurting too terribly, i.e.) and when the bad stuff surfaces again, I tell myself it has to subside because it just has to!!!!!
The dryness in my eyes is unbearable, not to mention the mouth which makes it impossible for speaking, swallowing and breathing. I am glad everyone on this website is open about their suffering. Perhaps by sharing, we can help each other alleviate some of the symptoms at best.
Hello Julie, welcome to Sjogren's World.
Sorry to hear that you share in this very uncomfortable and distressing symptom. I did find some relief from this "heavy, pressured feeling", but it was many years before my SjS diagnosis, and in my case it seemed to have been caused by "congestion" of fluid retention in the pelvic tissues, and taking a mild diuretic for a week whenever it started was my salvation.
I'm glad you've decided to join us and share your "sunny" outlook, and don't worry about the bad days, you can share those too, we understand.
Hi Sunnygirl :)
Welcome to Sjogren's world. You're right - everyone in here does share their symptoms pretty openly. I found iot a big help when I found the site. people can ask anything in here. No such thing as a stupid question. :) Nice not to be alone with it too.
Take care - Scottie :)
In November I had NovaSure done.. It's where the burn the inside of your uterus so you no longer have periods or if you do they are very very light.. I have not had a period since January.. However from Sept-November I could not stop bleeding.. I was rushed to the hosptial and they did emergency surgery... I only have one ovary (amazing how much I could bleed from ONE freaking ovary!!!!)... but the NovaSure did the trick.. so far... we will see the long term effects...
I just tired of my vajayjay hurting all the time... The Gyno did give me some estrogen cream to try but it says on the label "May cause headaches" I am already prone to headaches so what to do.. what to do...
Vajayjay is a Grey's Anatomy word.. I love Grey's.. as you can tell by my code name on here... I use that word all the time... i'm going on Wednesday for a full blood work panel... the Gyno is going to check everything.. AGAIN.. but hey what can it hurt?
Thank you for being honest girls.. It was an embarrassing question to put out there.. I'm glad I'm not alone!!!!!!!!!!
I was thinking of asking almost this same question!!! I understand the vajayjay problem very well. What I have been doing is using pure coconut oil on myself every morning or any other time i feel dryness down there (this includes the bum hole as well, does any one else get super dry there too?). Coconut oil is a natural antifungal too so that is a plus in my book as well.
I use to get bad yeast rashes under my breast, arm pits and skin folds and found using the coconut oil in them daily has stopped all those rashes for me. I guess I have become a coconut oil freak and use it for skin conditioner, eye makeup remover and so much more. I even use it on my scalp once a month or more to help wit the dryness there.
One of the strangest things that I have noticed over the last several years is how dry my skin has gotten. I use to have skin that was so oily I broke out all over and could wipe the oil off legs, face any where. Now I am having to oil up all over daily or even several times a day! Is this a common thing with SJS?
One last question I'll add here is has any one had problems with rashes on the breast and scaly rash on the nipples? I have tried every thing and not even my coconut oil regimen has helped. The Dr said that the meds he could give for this type of rash is not ones you want on such tender skin.
Thanks!! I am so glad yo all are here and we can ask open questions like this! Feels less embarrassing than asking the Dr on this with out knowing if it is just me and an age thing or something more.
Kimi
Quote from: SunnyGirl on April 05, 2009, 03:00:45 PM
I am glad everyone on this website is open about their suffering. Perhaps by sharing, we can help each other alleviate some of the symptoms at best.
Welcome Sunnygirl!
Yes.... I think that is what makes this such a special place...everyone is open and willing to share what each has leaned either on their own or through doctors. And the sharing is so very helpful to everyone here! I am always learning new things from people on the Boards!
Kimi,
Coconut oil huh? I'm going to have to look into that for my dry skin and yeast rashes. Where do you get it?
See? Something new I just learned today! ;D
I find that it's almost impossible for me to tell the difference between a UTI and yeast infection. If I've been on antibiotics, I know it's yeast, but otherwise...........You can buy a testing kit for each in drugstores. They are expensive, but if you get symptoms, it might help you know which you have.
I had "the burn" start the other night at 7 pm. All of a sudden and it was painful right then. I happened to have both kits and I did the test and neither showed positive. So, so much for that. I'm wondering what I'm going to do since it's night. I also could not control the urine because of the burn. So, I had to wear a pad for awhile. I sent my husband to the store for cranberry juice and I drank some good quantity of that plus lots of water and within a few hours I felt better. By morning, the whole situation was gone. I would have called the dr to see if I could get in if I was not better--but I didn't have to. Odd thing happening. Lucy
Kimi,
I make my own soap as I have a problem with Seborahea (sp?). Cocoanut oil will help natural soap lather better, clear acme and skin problems. BUT it dries the skin. You mentioned that you have dry skin and this could attribute to it.
McDreamy (ooohhh, makes my knees go weak).
I had a hysteroctomy 10 years ago because I almost died twice from bleeding to death. I never really had an vaginal problems after that until about 4 months ago when intercourse became extremely painful. I didn't know or have any idea what on earth was happening to me except that every time my husband tried, it caused me pain and I even had some bleeding from it. I mentioned this to my Rheumy and she told me that it was from SJS and to take Replens. This has stopped the burning and irritation problems that I was having. Getting rid of the brain's notion that sex is painful is my current problem. I can't help but wonder if there was some atrophy there as well and what is the cure for that?
SassieCat
read about Interstitial Cystitis, my Dr told me it is very common w/ sjs because the lining of the bladder is all moisture glands. I had these problems in the past, and a medication that helps re coat your bladder lining can really help. I had t take it for 3 mo.s only.
Is is so good to know I'm not alone. I thought I was going crazy. Even my gyn wouldn't give me an answer to the on again off again yeast and uti problems. I did learn that if I don't constantly treat the yeast the minute it shows up, and stop the sugar intake that it will cure itself most of the time. Through my own research I did find that the painful vajajay (I thought this was Oprah's term) and bum area (mine felt like paper cuts and would bleed) the atrophy and painful intercourse are symptoms of vulvodynia and dyspareunia both aggravated by sjogrens. No one ever recomened Replens so I'll look into that. I've been without "relations" for about 4 years. I also found that patting myself dry after urinating eliminated the pain/itching problem most of the time. I figure our skin is drying and thinning and wiping just pulls the skin so it "tears." But that's just a theory. None of my research has really given an answer to solving this and one Dr. implied that you need biofeedback to solve it! Thanks for your suggestions and best of luck to all of my fellow sufferers.
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.
I AM NEW HERE , BUT EVERYTHING I READ HERE IS SO FAMILIAR , I HAVE A LOT OF THE SAME PROBLEMS.
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.
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
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
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.
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.
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
:D 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.
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.
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.
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
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