Re: Re: Hello form the V boards From heather

August 21, 2006

OMG Dee, this is almost identical to what happened to me. The 6 o'clock spot exactly. Awhile back one of the dr.;s I saw said it looked just a little cut you get in the corner of your lip and it splits everytime you open it. THey all blamed it on me tearing while giving birth and then because I nursed for so long (14 months). This current dr. (yes, I'm looking for a new one) said he didn't see anything visible on my first visit. My second visit I had sex the night before, that's when he said he saw "abrasions". He wants to do a biopsy on my next visit. I haven't had one yet, not sure if I should or not. When all of this first started happening, I didn't have a lot of burning, only where the cuts were. Now there is burning everywhere, it used to be only with penetration, but now with wiping etc, it has gotten progressively worse. I am really bad (absent minded) about using the premarin. I really need to get better about it, especially if I want results. The lidocaine, like I mentioned burns really bad when I first put it on, then fades away after a few minutes. BUt those first few minutes, ouch lol. It was just interesting reading the similarities of what my symptoms are and yours.

Tracie

From: VulvarDisorders [mailto:VulvarDisorders ] On Behalf Of DeeTrollSent: Sunday, August 20, 2006 8:26 PMTo: VULVAR DISORDERS LISTSubject: Re: Hello form the V boards From heather

Hi , You're more than welcome hon.

No problem mailing me privately. (sometimes I'm overwhelmed so it might take a bit of time getting back but today's sorta slow) *smile* so hope something here helps.

Hon all I can tell you is that I absolutely 'knew' my problem was with my skin.. It was that extreme burning like squatting over a blow torch and

esp. that 6 o'clock area at the very bottom OW OW OW.

At first it was just after sex that lingered far too long (no infections, as those were definitely ruled out)... and then it expanded into the 24/7 years later and a dozen or more doctors to where it killed me to even sit or walk.

Also I do hear many saying it's nerve pain and those misfiring or for too long....and no doubt it is for many, but as you might have seen me just write (a few posts back) where my doctor kept saying how he didn't see a thing (as if it was almost in my head or the actual nerves which you can't see either) till I looked at myself with a very strong magnifying glass and I could literally see the skin being stretched or ripped with a thousand tiny little hairlike cuts or splits, I had no itch and had severe inflammation too and ''eventually'' looked like raw bloody hamburger *sigh* ... (not initially tho)

So maybe yours too is the skin and not the nerves themselves hon. I've no idea but it's something to consider.

In my case I KNEW it was in the skin, I knew if I barely touched myself I went thru the roof, (even air or water killed me) so hon if you think that's your problem, what I can tell you is that the E & T (Estrace & testosterone creams) were my miracles and totally restored that skin and gave me back it's elasticty, it's color, tone and overall health again.

But mostly that stretchability that was regained where I didn't spit or tear during sex (by that I don't mean you can literally 'see' a cut or tear, but it's there if inspected close enough).. Just as if we stretched a rubberband beyond it's capacity it'll tear and snap & break apart it has no give or elasticity and the skin acts the very same way. (Same with belly stretch marks by the way, there you can literally see where it pulled apart with no 'give'. (yes I've those too)

I mean I was really bad, one of the worst cases so I've been told, as well as seen myself with various photos. *sigh*... it was a long very slow process since the Estrace cream really irritated me (the base it was in, not the estrogen) naturally going on that extremely excoriated skin (heck water and air did as I mentioned) and that is why some do get the estradiol compounded in a mild neutral base....

Anyway I could only use the Estrace (pea size) maybe one day out of 3 or 4... (bedtime is always best) and eventually over a month to six weeks I moved it to maybe every 2nd or 3rd night... another month to maybe almost every night.

So it took me about 4 months to get to that stage while the skin was rebuilding very slowly & skin has it's own rate of renewal and we just can't rush it, so NO overusing of any of the meds. More is NOT better!

By then I ''looked'' wonderful down there and was feeling probably 85-90% better. Still just a bit 'ouchy' tho.

That's when I learned about the T and how it can help strengthen and toughen up the skin, so I added that right on top of the E. I used it about every 3rd night. (always gently massaging those in of course).. 'gently' *smile*

I did that for the next two months (using both) but used the T only a few times a week (today I might use more but was leery back then.. Today? not at all)*smile* so by the end of a full six months I was 99.9% better and ready to try sex again and put it to the test. *smile* I had been celebate for the previous 3 yrs (last 3 of the 10) because the pain was SO bad so I was chomping at the bit. LOL

Anyway it was wonderful and I sure didn't forget how *wink*... and it was sooooo good to be me again as I'd always had a high sex drive and that about killed me to not do it. That's when I thought God cursed me *sigh* So ridiculous in hindsite of course but the crazy things that go thru your mind.

It did take a while to get over the psychological part tho, with always thinking ''Is it back???? OMG.. please no''.. but just the tiniest little twinge would make me think that but eventually you realize many normal women have that once in a while and it would pass by the next day. So it took me about six months to get over the psychological part of it. But after having that knee jerk reaction for those 10 yrs of pain it's no wonder but it leaves. *smile*

Anyway hon that's just a real brief story of how it worked for me and today as long as I do a maintenance of just a small peasize amt. of the E & T usually once or twice a week, it's kept me well (and sexy *grin*) for 7 years now.

If I forget occasionally and go a few weeks without it? Yep, it lets me know with a bit of an oooh .. but I get back on it right away and I'm fine. So I've just really never had another flare up since then and I rarely forget.

But...... Keep this in mind...... you sure can go into one 'during' that healing process and that can be scary thinking it won't or isn't working... but that's fairly common too but what generally happens and I saw this even on that article Dr. J. Willems wrote, is that the flare ups get less and less and further apart in between till hopefully there are none.

I also would go off of everything 'during' those flares tho till things simmered down. There are times when the skin needs a total break from everything except possibly a very mild Emu oil or cocoanut or Olive oil..for soothing but nothing with any chemicals in it. And definitely NOT any lotions or creams those have many additives that can also irritate. Ointments are probably ok like vaseline or Aveeno too but I think the lighter 'oils' might be better.

I sure hope that helps hon and is just 'my' experience for what it's worth. Whether that fits you or not hon who knows. Up to you *smile*.

Being pregnant makes it tough right now.... have you asked your doctor for a mild or low grade steroid cream? Some women I know who were pregnant were able to use a mild one with very 'limited' use of course but if in dire pain they did and all was ok.

So steroids are good for symptom relief (used correctly) IF you are able to use them but they don't restore the skin, they halt the symptoms. But I'd 'almost' think too with yours it might be hormonal since you have relief during pregnancy when hormones are high. Also don't forget 'after' delivery your hormones are very low and messed up for a while, so if you have pain then it's likely that as well.

Hon I hear you about those yeast meds too and WOW can they do a number on us with frying that skin. *sigh* Some articles suggest that may be a trigger for the V pain (and overuse of steroids as well or any types of chemicals *esp. if overused*) and it makes sense too but even if it's that I'd think personally the E & T could really help restore that damaged tissue nerves and all. Anyway hon just my two cents for what it's worth.

Big hugs and the best of luck hon....

Dee~

----- Original Message -----

Dee I hope you don't mind me emailing you. I just have few questions about the E and T treatment. 1) what were you symptoms2) what did you to get better3) how do i find out if I need thisI read you recent post but to be honset got confussed and lost. I was told my isusse is nerve damage from all the creams I was given when all this started. BUT I was pain free after my daughter and starting to have problems in the pg again. I was told the reason I got 100% better was because having my daughter streched my nerves and reset them so to speak. Hey I was pain free so whatever LOL. Now after just one BV infection and one Yeast infection ( which I had to use creams again because of being pg) I feel as bad as I did when this first started. I can't belive i did this to myself. I KNEW I can't handle those creams but I thought I have been fine for so long it will be ok. OH to own a time machine LOL>So anyway I have burnig and pain during and after sex. It sounds like alot of women only have pain with sex not day to day like me. So I am not sure if E & T would help. Any thoughts or ideas would be great. If this pain continues after birth I will be seeing the doc at UofM again or my doc will do phone consults with them and treat me. So trying to get all my ideas together before then.Hugs & Thanks

August 21, 2006