Severe burn/stinging vagina and labia for 6 months - PLEASE help!

[t9876]

I’m up to 12 Dr visits from PCP to uro-gyne.  No one can do anything for my pain that is often 8-10 on the pain scale every day for the last 6 months.  For the last 9 mo’s I've had this issue - in June it got esp. bad.  3/12, I had a sinus infection and took 2 antibiotics, about 2 weeks later this burning started.  About the same time I started drinking coffee regularly for the 1st time.  I stopped the coffee and the pain continues.    

I'm a 29 y.o. student and have a 6 year old child.  I can't live with this type of pain!  I can't ignore it, I've tried thinking positively, every day is bad.  Immediately after I urinate and wipe, the pain starts. It aches even when I don’t wipe!  Sometimes it feels like "ice pick" pain, other times it stings.  It can last 10-30 mins or be constant until the next time I urinate.  I can't wear any tight pants.  The pain isn't as bad when I wear a dress, but when I sit it starts getting painful again.

The labia feels hyper sensitive & I feel much drier than I used to be.  No intercourse anymore. I can't sit for long periods of time – labia doesn’t like pressure.  I’m careful how I wipe.  It has ruined my life.  Urine, PAP, lab etc comes back negative except I requested a cytoscopy and the saline came back with "Mild bladder inflammation".  So I followed the I.C. diet, no difference in pain.  

I was on Loestrin/Junel with no probs.  They switched me to LoLoestrin (was it too low?).  I got off of LoLo a week ago to see what happens.  

I've tried relaxation, soft toilet paper, cotton underwear , dabbing urine, standing more as sitting kills, Replens, AZO/pyridium.


Dr's have tried:
-Diflucan once &  every few days
-BV meds
-Antibiotics for a “bladder infection”
-Sitz bath
-Amitriptyline nerve blocker
-Pelvic floor therapy sessions (more pain!)
- Elmiron for a few days but this drug is difficult  
-Pyridium
-Cymbalta now

ANY ADVICE AT ALL - YOU DON'T KNOW HOW MUCH IT HURTS. ;(

  

[t9876]

Oh, I understand what you mean.  I'm just pretty sad with my diagnosis because there's no cure, it could last a few months, go away and come back, and the medical community knows very little about this - so women take unnecessary antibiotics, meds, and creams and can actually make the situation worse.  I am awaiting going to the pelvic pain Dr. for their opinion.

[whiteshadowcgb]

Thanks for the feedback, a lot of people post things here, which is helpful because it make you feel better knowing you're not alone but then they never post a diagnosis :)

[t9876]

Some Dr's think the antibiotics I took during my sinus infection caused it, they were harsh antib.  I think it may have been a combination of that and biking.  A few months previously I started some very painful biking.  The seat wasn't right so I replaced it, but I was just never comfortable and all the weight was on that tiny spot.  I no longer bike at all but it hasn't gone away.  Did I damage the pudendal nerve or a muscle?  Who knows.  All I know, personally, is that it has ruined a good portion of my life with chronic pain all the time and flares after urination.  I spasm a lot and have "restrictions" or knots vaginally and on my stomach.  I just hope someday it goes away, because I can't live like this!

[t9876]

I got off the birth control for a month, and there was no improvement.  My ob/gyn said if that was the cause, it would have gone away.  So it isn't that.

I didn't like my pelvic floor PT's methods so I switched to a different pelvic floor PT at my hospital.  She is eons better.  She diagnosed me with "vestibulitis" a subset of vulvodynia, will the hallmark being burning and knife like pain.  All the creams and nerve pills in the world won't solve it.  No quick fixes.  Valium inserts helped a LOT, but only worked five days!!  My ob/gyn said don't mess with creams, inserts, b/c on top of your normal problems you'll get contact dermatitis or rebound symptoms.  So I am not.  

The only next step is more physical therapy, and a PELVIC pain Dr with probable injections.  It's still just as painful as back then.  It's not IC.  I was peeing every 30 mins but that was probably infection related (that didn't show up on tests).  Now I can go 3-5 hours.  

She said food could be the #1 reason, but it's not guarateed.  Every week I'm eliminating something.  I already gave up coffee/decaf tea and have less urgency.  I just drink water.  Then by eliminating chocolate I am able to sleep through the night (versus get up, pee, be in level 10 pain for 2 hours) and go back to bed.  Now I'm giving up dairy for 1 week to see if there's any change, since my mom's lactose intolerant.  

This 1 year process of burning and knife like pain is pure torture.

[whiteshadowcgb]

what was the diagnosis?

[margaretskipper007]

Wow...that would really suck if its the lolo. When i was younger, my mom told me about a million horror stories about how bad birth control was. No doubt she made most of them up to keep me from getting them behind here back and having "the sex"...lol. But still, ive never taken any.... I havent heard any stories from people actually taking them...but im going to google and see!  Now that you're off lolo...i hope it all goes away!

[t9876]

What I meant by vulvodynia caused by LoLo is that I've read super low estrogen pills can cause menopausal like symptoms like dryness.  I've never been drier or tighter in my life.  I've asked herds of Dr's could it be the LoLo pill (or the pill before Loestrin) and I get many "It's not probable" and "No".  I'm off of it to test my theory after reading others' stories online.  

[t9876]

Thanks for responding!

No rash anywhere. Dr's say my "tissue looks normal" all the time.  But my husband, TMI, who has seen me for years on end says the labia look bigger, redder, and I'm very very dry compared to a year ago.  No discharge that I notice.  

I was on Diflucan day 0 (left office), day 3, 6, 9, and weekly thereafter.  Didn't notice a big difference.  

I tried a probiotic from Whole Foods actually for a different reason,  I may start that up again.  It can't hurt, right?  

I've been tested for yeast nothing shows up on many tests.  My Dr. put it under the scope and said a few yeast cells were floating around but there's always some yeast there.  

I'm SURE the antibiotics didn't help either of us!  I really had a raging sinus infection with so much pressure I thought I had 4 root canals.  Went to the Dentist to get checked, nothing.  It was ALL sinus related.  

If this vulvodynia type pain is because of LoLoestrin I will be very upset, will start a blog, and may sue!  

[margaretskipper007]

Im not medically trained.. :/ but ill give you all the advice i can. First off, do you have any sort of rash...maybe under your arms or your upper thighs. How about a vagina discharge? If so, this may indicate a serve yeast infestion which has elevated into candida. Candida is when there are more yeast then normal. Your body needs some yeast, but its a delicate balance between yeast and bacteria. Other symptons of candida include a white coloring to your tongue and possibly slight bowel irregularity. From what i hear, if you have full blown candida, Diflucan might not be enough by itself. There are certain natural type things that may help. First off, start taking a probiotic. Second, try to eat vastly less sugar and carbs. Next, get some garlic filled gel caps and eat with all your meals. Lastly, your can use coconut oil on your skin to clear the rash and it might help with the pain. Id definitly stay away from anymore antibiotics. Ask your doctor if its possible that your yeast is vastly out of control and if you could have candida. Maybe he'll have a treatment for it.

On a personal note, i have a heart condition and was prescribed loads of antibiotics when i was getting dental work done. I developed a discharge and pain...but my gyn said everything was "normal". HA. Apparently yeast/candida is hard to diagnose and easy to miss.