biopsy

yes actually my pc doctor has a new online chart and I have talked to her several times today. She sent in prescriptions for nortrityline and hydrocodone.

Yes my culture  came back positive for E Coli. I will finish a 7 day script for Bactrim Saturday and then I have a diflican to take for the third time since this started. 

I agree if I could control the pain and burning I would not feel so panicked. And that is what my PC doctor said in her last message if we can control the pain and burning and tap back the UTI she's positive it is AV and the estrace will kick in. I'm just having trouble being in so much pain. The thought that this pain is going to stay is what is making me so afraid. Maybe the nortriptyline will help with that

That's the purpose of taking nortriptyline. Although it's an anti-depressant it affects seratonin levels or something. You'll have to google that info. 

The hydrocordone is definitely for pain as it's an opiod. Your doctor is obviously with you all the way so you shouldn't worry now.

Bactrim is given for e.coli and UTI's. Have you taken it before?

Diflucan is for yeast isn't it? Not sure why you are taking that unless you have yeast as well.

Are you the person I recommended drinking kefir to? It has many live probiotics in it. Cannot hurt you. It's like a yogurt drink. Also comes in flavors, but those have more sugar & if yeast is a problem you don't want to be feeding it with sugar. Drink the plain one.

The pain will be abated. One way or another your doctor will be able to  get it under control. Give all the meds time to work. Once the infections are under control I would definitely start looking into the Mona Lisa treatment if I were you.

Have you read other threads? Eventually women are finding solutions. You have the advantage of their experience by reading their posts. That should calm you down quite a bit.

Think of women 30 or 40+  years ago with no internet & at the mercy of just their doctors. Personally, I think women being able to share info is a godsend. I had none of this 20+ years ago which is why I suffered for 5 years with a raging infection. My new & apparently incompetent GYN refused to prescribe a drug that had worked before and convinced me I had other issues she was trying to cure.

You will get better. You have to think that. Worry only weakens your immune system. If you are religious pray. Eventually the meds will kick in!

Here it is almost 3 am and I'm about to lose my mind. Got up to get an ice pack. Thank you for taking the time to encourage me. I leave this morning for my first Fall art show in Ohio. It is a 3 & 1/2 hour drive which will probably be more like five with bathroom breaks. Really I am not sure how I'm going to survive it. Doing the shows have always been fun for my husband and I. But they are my income too. I have to go

I have been praying for healing for awhile now. I know I'm getting myself in a bad state. I'm not a sissy I thought I could handle pain. Not so much with this.

Anyway thank you so much. Just being able to talk to someone that understands helps so much

Hello Beverly.

I've been reading these threads and am reassured by your comments. I had a nasty UTI in June and was given 5 lots of antibiotics and suffered 5 bouts of thrush as a result. Like Donna I now have constant burning and stinging in my vagina. I've been to a uro-gynaecologist here in the UK who did a cystoscopy and took a biopsy and a swab. Clinically there is nothing wrong and he told me I have vulvodynia.  I already have and Oestrogen patch and should be taking progesterone every 2 months but I seem to react very badly to that. (I also have to use it vaginally which is impossible at the moment). The specialist has referred me for physiotherapist with a specialist physio who deals in women's health - he is obviously thinking of pelvic floor muscles being in spasm which may be right.  The first appt is in two weeks and like Donna, I am in agony. I don't think they do Premarin cream in the UK. I've tried Ovestin cream but it caused bleeding.  I've been put on nortryptiline - I can only take 20mg and it makes me constipated and hasn't done much to alleviate the pain as yet.  Any other ideas?  Thank you so much. (I take probiotics)

Brevis, was that cystoscopy to get biospy of the urinary bladder?  Was swab done to check for infection or cervical swab?

Brevis, I haven't dealt with vulvodynia, but another woman on another thread has. I directed someone to her at one point. Have you read those posts? Sorry, I really can't keep all these names and problems straight. 

I'm not surprised you have had infections as a result of so many anti-biotics. I never found any probiotics in capsule form to work for IBS. The kefir works, so I figure it can't hurt re other bacterial imbalances. A friend of mine got C-Dif, was hospitalized twice and given huge amounts of antibiotics. Her husband was afraid she would die. After leaving the hospital she went to see a practitioner who prescribes natural herbs, etc and she finally got over her illness. She's in great shape now. I do think if you can aid your body's natural ability to heal through correcting imbalances rather than calling in the troops that kill everything you are better off.

I think it was nancy-o(?) that had severe UTI issues and was very happy with the results of the Mona Lisa treatment. Ultimately, I think I will have that if my problems worsen. I just had laser for sun damage and yiur skin really does heal beautifully!

Everyone seems to have used hormone creams in some form or another. Some are successful; some not. I haven't used Premarin (called something else in UK) for my AV because my sister just died of estrogen dependent breast cancer and I can live with my mild symptoms ...for now at least. My latest GYN warned that they could get bad and this site has been proof of that for sure!

There are bio-identical hormone creams that can be created according to your own hormone imbalances and needs. You would need a specialist for that as well as a pharmacist who makes them. (At least here in the US). I was given Premarin years ago when I had a mis-diagnosed infection. It just made matters worse.

Have you ever tried alternative medicines? I took Chinese herbs because of fibroids that my GYN was very concerned about. After taking the (awful tasting herbs.. think I made tea with them) the fibroids shrunk. Doctor said it was not the herbs (??) The medical advice given to me was complete hysterectomy!! That experience got me started  with acupuncture which I have had terrific results with for shoulder problems. If it weren't so costly I would go more often. Have also tried homeopathy for the misdiagnosed vag infection. I felt results almost immediatley, but then started with flu like symptoms so gave up on that. People's bodies are different and react differently. Sometimes you have to experiment to find what works best for you. I do see regular doctors for check-ups, but I don't think western medicine has all the answers. Other than those ideas I can't suggest anything to you. I would look back in old posts to see who had your specific problem. You can private message them and possibly get better info as the moderator here blocks specific info.

 I know how awful it is to be chronically burning & itching. Just keep researching and communicating with other women. ?Keep an open mind. Best of luck.

I'm amazed how many of us are in pain. I had an art show to do this weekend and we got almost to Ohio and my husband turned around and brought me home, he's doing the show alone. And I'm so upset but he was right I am in such bad shape. I took a Norco and a pyridium at the same time and got seriously messed up couldn't even focus. And of course the burning is still there. So I'm home by myself and mad three weeks ago I didn't have a care in the world

That's what I think my kitchen counter is covered now in prescriptions. I hate it and so does my body

 

I had the Mona Lisa on my vulva, I, also happy with the treatment.

i was told I had vulvodynya - used lidocaine and amitryptylin for the pain - had a MRI for something else which showed I had a batholin cyst in the same area. I'm  convinced I don't have the vulvodynia as the tablets did nothing for me only lidocaine helped numb a little the pain. Thankfully my cyst seems to react for about a week/month and then disappear for months on end 😊. Sad.y it's not big enough for the gyne to see with their own eyes so they don't think I have it.

Hello Brevis

You mentionned uro-gynaecologist where about in the uk are you?  I do not think I can access this service in Bucks.  Gynae said I have vulvodynia as well.  Urine culture came back neg and yet the GP prescribed antibiotics for 2 weeks.  When I queried it I was told blood and pus was found in my urine and to cntinue with the antibiotics but it should have been prescribed for one week not to.  Today spoke to another GP as was waiting for clearance to have a hysterecopy & she told blood in the urne could be anything since I have got gynae problems and not to continue with the antibiotics.  I am so confused I told her will finish the course wait for 1 week and then do another routine test.  My main sysmptions is constant buring and lower abdoominal discomfort and sometimes a discharge.  The symptoms are manageable, it's GP who thinks it is AV but gynae when I mention it to her she says may be but she thinks I have vulvodynia am not sure about that.  May be it is a urogynae I should see.  I do not have burning pain when I pass urine but although the flow is strong I have post micturtion I have to sit a bit longer nd I still passing small amount of urine.  I do not suffer from stress incontinence or leaks in my pants.  I feel my bladder is not completely empty it is possible the fibroids or adenomas they found in my uterus are causing pressure in my bladder.  I think if there is still blood in my urine and culture is still negative I will ask to be referred to a urologist.  All my symptoms point AV.  Would be interested to see how you get on?  This has been going for years.  I had vaginal infection and thrush without even knowing as I put all these discomfort to AV.  I am glad I found this forum and we are not alone.  Thanks

I've had biopsies on the labia and smears/colposcopies where they take biopsies/samples. All depends on the location on what I can advise you from my experiences.

The spot was inside she said more like an inflammed strip

What results did you get? I have oral lichen planus and my oral surgeon told me to watch for it in any mucas membrane. But three doctors have said they don't think that's it. 

I was told I had Lichen sclerosis. Minor shrinkage of labia. Reason I had the external biopsy was due to burning pain on vulva. The colposcopy didn't show anything on the burning area, but other areas it did and biospised to get the result. Interestingly a pelvic MRI scan a year later for something else showed I had a batholian cyst which is small. This is reactive sometimes and what is the cause of the burning.

internal is a whole different story.

Ask your gyne to biopsy for VAIN.

i had high grade CIN before my hysterectomy. Ever since I have to watch out for VAIN.

its the same as pre cancerous cells on the cervix but it's on the vaginal walls

Samantha, did you get your results back yet from your bisopies and other test?

When they do a cervical pap then why dont think take a vaginal swab for us as well why would they NOT do it on our regular check ups since that can get cancer too?

Which ones - internal or external? The external one's said Lichen sclerosis. The internal was CIN 2/3. 

The vaginal walls are folds of tissue and not as easy to swob one area and assume it covers all. You need a colposcopy and the iodine putting on as much as possible to find the area. Takes time and resources. It's not normal as VAIN is rare so they don't consider it the same need as CIN for cervical cancer.

internal sometimes external...what is CIN 2/3?

CIN is cervical intraepithelial neoplasia.

there are different grades 1/2/3. Low medium and high grade. These are levels of pre cancer cells which is what the doctors are looking for when they undertake the Pap smear. 

In a similar setting you have VAIN which is vaginal and VIN which is vulva.

symptoms can be bleeding, itching/burning, lesions etc. Your doctor will keep an eye for these and they can show up on a biopsy.

I honestly think something larger is going on with me. Tis is too much pain. I woke up this morning shaking from head to toe from the bladder and vaginal pain. Now it seems to include my rectum. I had to eat so I could take the pain meds and it took an hour to calm down. This seems so extreme to just be AV. Finished the antibiotics and day nine on the estrace. I actually think the pain is worse. I can barely pee today. Almost went to the ER this morning it was so bad

I'snt that Estrace ( A form of HRT) ? Seems like that would make worse instead of better. i been picking up on probotic drink and plain greek yogurt and it's helped! Pick up on water drinking too! I switched to Vagisil femine wash too. PLUS I bought MUCH bigger underwear but at home I use pj light weight pants and wear NO underwear unless going out all has helped. I make sure I dont wipe down there so hard or press making to much pressure. ALL those changes has helped! 

donna, I can only say what I would do. Did that link I sent you (heaven forbid I should post a link to a site explaining pelvic floor muscle problems without it being blocked) include what can be done for the problem? I just read that one page & sent it on to you. Anyway, if it is a spasm of the muscles, you could try to relax them with guided meditation, deep breathing, relaxation clips, etc  on you tube.

On an old thread someone said she had trigger point type massage from

a specialist ( physical therapist maybe?). I have NO idea where you would find one with that specialty, but if I recall correctly she said it worked.

Did the doctor prescribe a tranquilizer? I should think the opiod would certainly work. I'm sorry I don't have more knowledge. maybe someone reading this will remember who posted that info re the massage.

Does your doctor have on call coverage if you call on week-ends? What you're going through doesn't sound normal...even for AV.

Are you able to relax your muscles enough to urinate or defecate?

No emergency weekend is just the er. I'm amazed I have explained this pain to three doctors now and they have an oh well attitude. I woke up again this morning in severe pain and it has been bad all day. Tried to do a simple thing like get groceries and it is on fire now.  

I'm doing all of that. Yes estrace is estrogen I'm on day 11 of a two week course but last night when I put it in I started stinging and burning deep in my pelvis. Two nights ago my grandkids were here because my husband had to go do my art show for me. They didn't want me to be alone. And I forgot the estrace that night . The next day was the best day I've had in three weeks I only took one pryridum in the morning and one fourth of a hydrocodone the whole day ! Then last night I couldn't sleep at all after I put the estrance in. I'm not sure what to do . I was supposed to do 14 days of it. And I hate to give up now but I am dreading increasing my pain and being awake another night. Any ideas what to do, just finish the last four days or stop. I've had a miserable day and feel like I will never have my life back. I'm making appts tomorrow with a new gyn and another urologist. There are other things this could be and right now I feel like this is the wrong DX

I did not see the link was it in the PM?

YES, the moderator does not allow links although they are to pertinent info.

The fear seems to be advertising. Sorry I don't know exactly what the site was. Just google vulva pain or similar terms.

Or maybe ask the moderator which link he blocked.