5:14 pm - 12/12/2009

6+ months of angry vaginal/vulvar issues.. Please help!

Hi Everyone! I made a LJ account specifically to post here, hoping that one of you amazing superstars might be able to help me! I'm desperate at this point.. I'm 23 years old and have been having major angry vagina/vulva issues for the last 6+ months or so.. Here is a play by play of what's been going on:

On May 7th, I had a surgical abortion. I had never been pregnant before and have been on birth control, off and on, since I was 14 to control ovarian cysts/hormonal acne/painful periods and to prevent babies. When the termination was performed, I was tested for STDs and the results were negative for any of the STDs they tested for. 3 days after the abortion, I started taking Ortho Tri-Cyclen. I had taken this brand of HBC previously for about 7.5 years. I was feeling fine.
Approximately 3 weeks after the abortion, I started noticing what seemed to be the beginning symptoms of a minor yeast infection. I've had them before on the Ortho and usually just experience minor discomfort/irritation/itching without any thick discharge or other symptoms. Since one dose of Diflucan usually does the trick, I made a call to my primary physician and took 1 dose of Diflucan.
After not feeling any relief for about 2-3 days, I called a GYN I hadn't seen previously and made an appointment for a few days later. After taking a swab and checking it under a microscope, the Dr. told me he didn't see any yeast, that some women just have naturally irritated vaginas, and sent me on my way. (?!?!)
A week or two later, the minor discomfort/irritation/itching turned in to what seemed like a full-blown UTI. I was having pain with urination, frequency, etc. I started drinking unsweetened cranberry juice and a ton of water. I went to see my primary doctor and he had me take a urine test and prescribed Bactrim to take twice a day for 10 days. When the results came back, the doctor informed me that the infection I had was extremely minor, if there was even an infection at all. He advised me to continue taking the antibiotics. After taking the Bactrim for a full week, I did not feel any better so I made an appointment with a different GYN. When I told her my symptoms, she said it sounded like a classic UTI and prescribed Macrobid(spelling?). She also took some cultures and ordered another urine test. I took the full course of antibiotics and still did not feel better so when the nurse called and told me all my tests were normal, I was frustrated. I made an appointment to see yet another GYN (the 3rd in 2 months!) who did a pap and took cultures. The pap came back normal and the cultures were negative.
So, by now it's mid-August and I make an appointment to see a Urologist. The urologist told me that my urine was crystal clear like a new born baby, that perhaps I should stop taking my HBC in case it was messing up my system, and to come back in 6 months if my symptoms persisted. I stopped taking HBC. If you've read this far, I'm sure you can imagine how hopeless I must have felt by this time because, at this point, I'm still having constant UTI symptoms in addition to the minor yeast-like symptoms. Having sex was painful upon entry of PIV, but was comfortable after about a minute or so. Urinating afterward was nearly excruciating, and I would feel pain for a full day or two. Any kind of foreplay was completely out of the question. Sexual activity was now limited to about once or twice a week, if that.
By mid-September, my UTI symptoms were gone, but the vaginal/vulvar irritation was still present. I tried sitz baths, plain, unsweetened yogurt, AVC rinses, tea tree oil gentian violet, Monistat, aquaphor, vaseline, vitamin e oil, etc. with no relief. Mid-November, I went back to one of the GYNs I had seen previously and she prescribed two doses of Diflucan to take one week apart and took cultures again (they came back negative). She told me that my vulva was extremely red and irritated. When I asked her about possible herpes infection, she told me it was unlikely since herpes outbreaks generally occur in cycles and I haven't had any signs of an outbreak, bumps, blisters, oozing, crusting, etc. She said that herpes would not cause me the symptoms I'd been experiencing and that she was thinking it still might be yeast or trich. The Diflucan only provided very minor relief, but it may have only been a mental reaction. When I asked the doctor what I should try next, she prescribed Cloebetasol cream and advised me to apply it twice a day for 10 days. I have been using it since then, for about a month, which I know can thin the skin, etc., but this is probably the only thing that provides even minor relief on contact. The doctor told me that, if this didn't work, she didn't know what else to do..
So.. all of that leads me up to today.. For the last 6+ months I have been in pain and have been experiencing irritation and discomfort every second of every minute of every day. I am constantly aware of my girly bits and not in a good way. The pain, burning, and irritation is now predominantly on the right side of my vulva and no more than half an inch inside my vagina, also on the right. Sometimes after walking around, the discomfort will be kind of sore on top of the burning, itching, irritation. I can liken the feeling to how it would feel if you accidently scratched a really severe sunburn, except I feel like that all the time.

Here are other things about me and also things that have been going on with my body since my vagina started this war on my life:
-In June, when all of this started, I had pink eye for the first time ever. My boyfriend didn't catch it and no one around me had any symptoms.
-I have also experienced really itchy armpits, elbows, and itchy skin on the back of my legs behind the knee, but have not switched deodorant, soap, laundry detergent, or anything else for that matter.
-I was diagnosed with HPV in August 2006. I had an HPV test done and it came back with two strains of high-risk HPV and one strain of low-risk that could cause warts. I had an abnormal pap and had cryotherapy which did not change the abnormal cells at all. I had paps done every 4 months until I had a normal pap in August of 2008. At that time, my HPV test came back clear of any high-risk strains, but the low-risk was still present. I never had any signs of genital warts. After using the cloebetasol for about 3 weeks, I developed 2 flesh-colored bumps on the right side of my vulva, further up toward my clit, above where I have been feeling pain. The bumps have not changed at all in over a week or so and do not hurt/itch/etc. (Could this be from the extended use of the cloebetasol?) If these are warts, then I will get them treated.. This is the least of my worries at this point.
-I have only had one sexual partner in the last year. Prior to my boyfriend, I had not had sex with anyone at all for a full year.
-I am very conscious of my hygeine. I do laundry regularly with the same laundry detergent I've used for at least 10 years. I do not use soap to wash my girly bits, just water. I regularly clean my tub/shower and wear cotton underwear only. Thongs/boy shorts do not make a difference in my level of discomfort. I do not wear pantyliners on a daily basis, only during my period when I wear tampons as well.
-The last time my boyfriend and I used lube/condoms was probably over 2 months ago as I can not tolerate sexual contact at all at this point. Prior to sex with my current boyfriend, lube and condoms did not cause any negative reaction from my vagina.
-I have been waiting to get a Mirena for months and months.. It is completely paid for and has been sitting at my Dr's office for months just waiting to find its 5 year home in my uterus. Yesterday, I took a urine test for STDs as I am done with waiting for my pain issue to be resolved before I get this thing put in. I am scheduled for insertion on Wednesday.


So... Does anyone have any idea what is going on with my vagina?! This is beyond frustrating and is eating away at my quality of life. I'm depressed and exhausted and never want to do anything because even sitting still causes discomfort. Could it be Stevens-Johnson syndrome? VIN? Systemic yeast? Punishment for getting an abortion? I'm at a loss.. Someone please help!
[info]jenn_possible 13th-Dec-2009 01:43 am (UTC)
It's possible that you have some kind of skin condition going on, and it's just more severe in your pubic region.

Have you started a new job or moved? Has your boyfriend changed soap/cologne/laundry detergent/etc? It could be something in your environment that's not necessarily coming from you. Honestly, I think you should see a dermatologist. If the cause is environmental, it could be nearly impossible for you to figure it out on your own. It could even be something like eczema or a fungal infection based on where else you're itchy (armpits, backs of knees, etc).
[info]snowfairylove 13th-Dec-2009 01:58 am (UTC)
I have been considering going to a dermatologist.. Thank you for that recommendation! I've just been a little apprehensive to have a doctor checking out my goods who usually treats the acne on my face! lol I haven't moved or started a new job and my boyfriend hasn't changed anything either.. Would a fungal infection have been detected during any of the tests I had previously?

Thank you for your help.
[info]jenn_possible 13th-Dec-2009 02:20 am (UTC)
I'm not sure about the previous tests, but if Diflucan helped, it could be a fungus. Also, some fungi, including some yeast infections, show up under blacklight, so that could narrow it down a little bit.

Have you taken Benadryl lately? If an antihistamine helps, that would be a sign that it's contact dermatitis or some other kind of skin allergy. No matter what it is, I wish you the best of luck. It sucks to be so irritated and itchy.
[info]snowfairylove 13th-Dec-2009 02:25 am (UTC)
I haven't taken Benadryl lately.. I think I'll try that.

Trial and error... lol

Thank you for the luck! :)
[info]watersaredeep 13th-Dec-2009 03:47 am (UTC)
Benadryl can make a huge difference in really itchy skin. I completely backup the recommendation to see a dermatologist. I did many years ago because I had similar problems to you, and I also had the itching near the armpits, scalp, back of knees and other parts of my body. Part of it was eczema, part of it was a thickening of my skin which caused intense itching.
[info]snowfairylove 13th-Dec-2009 03:52 am (UTC)
Thank you for the recommendation! I am going to do some research and call on Monday to make an appointment to see a derm. Can any dermatologist help with this type of issue or should I be asking for a derm who specializes in vaginas? lol That sounds so silly but I've already seen a bunch of doctors because of this!
[info]watersaredeep 13th-Dec-2009 04:08 am (UTC)
Hehe: "Hello, Dermatology office? Who is in practice there who would like to most see my vag?" ;-)

I went on a recommendation from my gyno to a female dermatologist and she didn't bat an eyelash. Just a heads up that mine wore a spot light thingy on her forehead and used a magnifying glass to look at all of the areas of my body and scalp that were making me insane including the vagina. It was a little startling at first but she was the ONLY one who was able to help in any way. I've been sitting here racking my brain trying to remember the name of the medical cream that she prescribed and I just can't remember. I believe it was some kind of steroid and could also thin the skin so I wonder if it was the same one you're currently taking.

My heart really went out to you in reading this because I felt exactly like you did. I could barely stand anything to touch my vulva/vagina in anyway and I never realized how intensely painful itching and that irritation can be. I think that [info] had really good points about immune system and our bodies rebelling, as mine was a direct cause of a long term illness, tons of IV antibiotics and numerous surgeries. It badly affected all areas of my skin, including the vulva. The good news is I've been free and clear of it for many years, so hope to your heart! *hug
[info]snowfairylove 13th-Dec-2009 04:23 am (UTC)
At this point, I don't care if the doctor is half-gnome with pink hair, 6 eyes, and 3 feet.. lol When I went to a gynecological oncologist back in 2006, he was very hippy-ish with a long ponytail and a spot light thingy on his forehead.. It made me giggle a little because he looked silly, but hey, as long as he got a good look at the situation, that was all that mattered to me! ;)

I'm thinking that this is may having something to do with my crappy immune system, which would explain why I might have my first occurrence of warts after having the virus for 3+ years. I am going to be very dilligent about taking my vitamins and getting enough sleep and water! Thank you for your positive wishes! :::hugs:::
[info]archangelbeth 13th-Dec-2009 01:34 pm (UTC)
This may sound crazy... But since I started taking 1000 units of D every 4-5 days out of the week? I have not gotten flat-out-sick except if I start slipping on my D. The bottle said "Improves Immune System Health" and though the FDA does not approve that statement, I do. (I used to catch everything the kid and spouse brought home, and now... I haven't, except maybe a day of the Thing That Caused Horrible Headache (H1N1?). I've gotten the "I think I'm coming down with something" feeling now and then, but it never turns into "oh gods kill me now this cold sucks" unless I haven't been taking the D.

I'm a very annoying convert now.

*crosses fingers for you still*
[info]watersaredeep 13th-Dec-2009 05:44 pm (UTC)
Doesn't sound crazy at all about the vitamin D. It was recommended to me for depression support and I was amazed at the difference it made, and like you I've warded off a lot of illness this year when various flu's have been all around me in family and friends.

You're never annoying, Beth. You've taught me a lot of important things about health in general that I didn't otherwise know. Because of you, I had my thyroid tested (came out great) and she just retested on Friday again.

We all really appreciate you so very much.
[info]maradydd 13th-Dec-2009 02:55 am (UTC)
+1 on the eczema possibility -- the minute I saw the mention of skin involvement outside the vulva, I thought "eczema!"

Also, for the OP: with regard to the UTI symptoms, do you know what strains they cultured for? I had off-and-on UTI symptoms for the better part of 2008, though it was never for all that long at any given time, so I put off seeing a doctor about it. Eventually I did, and the first culture came back negative but the doctor put me on Macrobid; symptoms persisted, he did a broader-spectrum culture, and that one came up positive, though I no longer remember which species of bacteria it was. A week of Cipro knocked it out, though.
[info]snowfairylove 13th-Dec-2009 03:00 am (UTC)
Can you get eczema on your vulva/the very inside of your vagina? Definitely time to see a derm!

I'm not sure which strains they cultured for.. I'll have to call my doctor's office to find out.
[info]maradydd 13th-Dec-2009 03:10 am (UTC)
You can get eczema anywhere -- mucous membranes are just as likely to be involved as regular skin.
[info]paraxeni 13th-Dec-2009 01:50 am (UTC)
Oh darling, whatever it is it's not 'punishment'. Please don't think that way. It really does sound like the kind of irritation caused by frequent or extended yeasties, even if they were mild different people have different sensitivities and you could be someone who cannot tolerate even tiny amounts of infection on your bits. Also after your year of surgery and stress, medications, on and off BC etc. your immune system is probably a bit overwhelmed. After a series of kidney infections and months of antibiotics this year I've had a very similar situation. Sex has been out of the question a lot of the time, it hurt to walk, itched constantly, and was so red it could be seen from space. Things only started looking up in the last few weeks, but I have no idea why! I only hope it's because my immune system has come out of it's huff after being trashed by medications, and is no longer on strike.

I hope you get some help and answers soon, and have a successful Mirena insertion. I have one and I love it. It's not for contraceptive purposes but to suppress awful periods, and it was well worth the initial discomfort!

Good luck, and big hugs.
[info]snowfairylove 13th-Dec-2009 02:06 am (UTC)
I LOLed at "so red it could be seen from space" because that's exactly how I feel about mine!

Thank you for your comforting statement about the punishment.. I don't regret my decision to have the surgery, it was the right decision for me, I just couldn't help but wonder if maybe my surgery had something to do with all of this.. Bad karma maybe?

I'm sure my immune system is overwhelmed. I have started taking a multi-vitamin regularly and I hope that will help at least a little bit.

I'm glad to hear that you're feeling better.. It gives me hope! Tell your immune system to call my immune system and tell it to shape up and start doing its job! lol ;)

I am very excited to get the Mirena.. Thank you for your encouragement! You have been very sweet! :)

:::hugs:::
[info]maradydd 13th-Dec-2009 03:09 am (UTC)
The only involvement your surgery might possibly have had in any of this would be if you picked up an infection during the surgery (unlikely) or while healing from it (also unlikely). I could maaaaybe see a cryptic bacterial infection of the uterus causing the symptoms you describe, but then I'd expect to see much more external involvement (e.g., inflammation of the entire vagina, or deeper in).

But this is totally not a "punishment" for anything. This is VP, we do evidence-based medicine here.
[info]snowfairylove 13th-Dec-2009 03:15 am (UTC)
A bacterial infection of my uterus could be reallllly bad with the Mirena.. uh oh..

Thank you for your help and for telling me this isn't punishment..
[info]maradydd 13th-Dec-2009 03:55 am (UTC)
As I said, though, it's super unlikely. I'd expect discharge, heavier than usual bleeding, low back pain, abdominal pain and fever. Your gynecologist can do a cervical swab and an ultrasound a couple of days before the Mirena insertion if you want to rule out PID.
[info]snowfairylove 13th-Dec-2009 04:00 am (UTC)
No discharge.. My bleeding and cramps are actually less than they were about 3 months ago.. I had minor low back/abdominal pain when I had UTI symptoms, but only for about a week and that was months ago. I'll check with my doctor to see about a swab and ultrasound.

Thank you!
[info]maradydd 13th-Dec-2009 04:06 am (UTC)
Any time. :) I'm not a medical professional, just a bioinformaticist, but I like to think that if I were a doctor I'd be like House, ordering tests all the time. I like ruling things out.

Good luck and I hope you feel better soon!
[info]snowfairylove 13th-Dec-2009 04:08 am (UTC)
Funny that you say that... My dad said that I need House for all of this. lol
[info]coco1040 15th-Dec-2009 03:31 pm (UTC)
this: "Oh darling, whatever it is it's not 'punishment'."
[info]pinkdramon 13th-Dec-2009 02:01 am (UTC)
Ouch. Now I'm a little bit tired now, so this may not be the most detailed explaination, but,

Based on the long term duration of these symptoms, your own self-description of pain, irritation & redness, mostly dealing with the vulva & urethral area here rather than the internal vagina, repeat visits to baffled doctors who are unable to help you, cultures that come back clear & fine, and already having taken steps to minimize irritation your skin goes through, you already used lubrication during sex,

It may now be time to consider the possibility of vulvodynia or vulvar vestibulitis. Not a doctor, can't diagnose you, but, maybe want to start thinking about it & calling around doctors & seeing if they know what it is. Don't bother going to them if no one at that facility has dealt with vulvar pain patients before.

I am not sure if HPV or abortion has anything to do with a diagnoisis of vulvodynia. I don't hear about that much, but I've never been pregnant or had HPV & I still got it. Don't think I've ever heard anything about pink eye being connected.

You are using a steroid ointment now & are aware that it can thin skin. You may want to look into gradually tapering down use until you stop using it completely, and/or supplementing with a topical hormonal gel. Estrogen gel can plump up vulvar tissues, which, sometimes, can be enough to alleviate the discomfort of vulvar irritation due to vestibulitis. Maybe not, but it might take an edge off.

Relatedly, there is some evidence to suggest that hormonal birth control MAY be correlated with developing vulvodynia later on in life. Obviously this is not the case for everybody, or else no one would ever use HBC to begin with. This was the case for me, although it's not clear to me if that was the ONLY cause (probably wasn't. Just another one in the pile.) Why this is, isn't totally clear, and you'll need to decide if HBC is still right for you (Some people with vulvodynia stay on it due to painful periods; some HBC options may be better than others.)

There are treatments for this so if it sounds about right to you, then you may be able to find relief. It's a long-term problem though so it may take some trial & error to reach that point.

BUUUT,
Vulvodynia is a diagnosis of exclusion! It is very important to rule *every other possibility out* before you jump to that conclusion. I mean everything.
[info]snowfairylove 13th-Dec-2009 02:22 am (UTC)
Thank you so much for taking the time to provide this information.. I will definitely do my research on these two conditions. Long-term problem sounds so discouraging even with the hope of an effective treatment.. Do these conditions usually occur in women in their early twenties? I can't imagine living 50 or 60 more years like this.. :( I already have a life-long vaginal issue with the HPV..

I have already made an appointment with a gynecologist who came HIGHLY recommended and is about an hour away. I will have to call to determine if she's dealt with vulvar pain patients. Most of the doctors in my area primarly deliver babies. Period. If you're not having a baby, they're not taking the time to provide proper care, unfortunately.

Can I only get estrogen gel from a physician?

Thank you again for all of your help! Knowing that you are positive and willing to help while you have the condition is definitely encouraging to me.
[info]pinkdramon 13th-Dec-2009 02:46 am (UTC)
They shore do appear in women in their 20s. Or childhood/teens (but that's rarer & hard to diagnose at that age so it probably wouldn't be named until 20s anyway.) Or nearing/after menopause. None is safe.

You can probably ask for estrogen gel from a physician, they'll probably give you something ready-made if you do like Premarin or one of those other ready-made gels I forget the name of... you probably want to avoid premarin actually, at least if you're vegan. It's made from pregnant horse urine. I had my estrogen gel made just for me after a hormone blood test.
[info]snowfairylove 13th-Dec-2009 03:03 am (UTC)
Pregnant horse urine?

Ew.

I'm not vegan but yuck. Thanks for the heads up.

Though I suppose if it would make me feel better.. At this point.. I can't say that there isn't too much I wouldn't try...
[info]archangelbeth 13th-Dec-2009 03:21 am (UTC)
Seconding dermatologist -- since there's whole-body involvement going on here -- and talking to your gyno about vulvodynia issues.

And NOT punishment. I mean, maybe if you had some really powerful psychosomatic thing lurking in your subconscious, it could be self-punishment -- but that doesn't make it justice, y'know? (So if you have anything in your subconscious, tell it to calm down. *wry smile*)

Good luck!
[info]snowfairylove 13th-Dec-2009 03:54 am (UTC)
Thank you. :)

My subconscious was really ok until all of this started happening.. lol

I will definitely see a derm and talk to my doctor about vulvodynia!
[info]holeinfoot 13th-Dec-2009 05:10 pm (UTC)
I'm sorry if this has been said before but change your laundry detergent and start rinsing everything twice after the wash. If you use softener then stop. I'm seconding the eczema thing. I get itchy at my vagina if I use detergent I'm allergic to. I know it's what you always use but it's possible to suddenly become allergic to it - I'd suggest non-biological detergent - so stuff made for babies usually.
[info]xxcacoethes 13th-Dec-2009 06:59 pm (UTC)
Just to offer one other possibility: interstitial cystitis. It causes UTI-like symptoms (pelvic pressure/pain/discomfort, urinary urgency or frequency, etc.) because it's a chronic irritation of the bladder lining, but when cultures are done no bacteria is present (because there IS no bacteria). It can show up as a high white blood cell count on the dip stick urine tests, but the nitrites will not be elevated. This condition can be diagnosed by a urologist or other experienced practitioner. I was diagnosed about 6 months ago, although I've been having symptoms for over a year. You could have IC and eczema (both of which are auto-immune-y). Whatever it is, I hope you feel better soon! I really feel for you.
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