Re: Dee's story & what 'I' used to get well - Janet

[Guest guest]

Sometimes I ask myself if this is a forever hellish, painful nightmare. The pain is so hard to live with, feeling that boiling water and toothpicks scraping on you isn't really the best feeling, yet I continiue to hold onto a thread of hope. Thank you for this email. I have been dealing with this for about four years; well over half my marriage. I dream of someday having intercourse with my husband once again and having children. To even write this is emotionally painful.

Tina M.

Dee's story & what 'I' used to get well - Janet

DeeTroll <dtroll (AT) cboss (DOT) com> wrote:

HI and all,

This'll be a long one (no doubt) with you asking me hon what I did to get well or what worked for me and I'll explain what kind of pain I had as I know each can be so different.

My pain was all in the vulvar tissue itself, with horrible splits,cuts, fissures, etc. esp. in that 6 o'clock V at the bottom. Mine was all in the skin and surface, not from any pelvic pain or deeper radiating pain and believe me all infections had been ruled out many times. It's like you know the difference between a raw cut on your skin surface (say on your gums) and a deeper type throbbing pain (like a toothache). Mine was definitely in the skin itself hon. I could touch it and wince.. Even air or water going over it was excruciating.

I had been diagnosed with all different kinds of things over the nightmare 10 yrs. (starting from it being just a mild irritation with sex to an extreme pain over the years) From Vestibulitis, and yes to yeast, (which it never was) to plain ol' vulvodynia to allergic contact dermatitis, etc.etc,etc, to finally one of Lichen Sclerosis which they think was likely triggered by a huge abuse of steroids as I was told to use in extreme amts. by several ignorant physicians (slather it on one doctor said) *sigh* who insisted I continue the worse I got and dummy me I listened as a nice little compliant patient, 'then' that is. *sigh* Today I question everything and say show me the proof, show me I have yeast before I'll use a medication.. Show me!

That's why names to 'me' don't mean that much. (yet I understand the desperate need to want one too) *sigh* One time I had 2 different diagnosis's in one day by two different doctors. And even went to the Cleveland clinic with no help or a firm diagnosis other than severe inflammation which after 3 biopsies showed that, I swore never would I have another one. So I gave up even looking for a name after that. All I knew is that I wanted the darn skin healed and I didn't care what the H. they called it. *sigh*

I ended up with huge blisters on the smaller labial lips that weeped, seeped and oozed. (again likely from steroid abuse) I was a real mess, worse than bloody raw hamburger. I'd have to prick those blisters daily with a pin just to let out the water and pressure as they'd balloon up 5X's normal size and the next day they'd be filled up again. *sigh* over and over it went. You talk about crying and sobbing as I wrote in my tear stained journal, WHY can't anyone help me? *sob sob* and what in the heck did I have?

I thought I had the most rare disease ever as I searched and searched, my own private library easily has over 1,000 books, (not all medical of course but a big majority) and I still buy them today (on autoimmunity, hormones, V pain etc.) and then being single thought OMG if anyone finds out they'll think it's some horrible sexually contagious disease.

It was bad times believe me. When I quit dating some people I worked with thought I was a lesbian, nothing wrong with that but I love men, *grin* but during those days I didn't want anyone to even look at me (and lord forbid ask me for a date) *sigh* and found myself dressing down and dowdy and just plain frumpy. That was not me, but you just crawl into this big shell and can't tell anyone why. Not even my best friend or family. *sigh* It was a big secret, I was so embarassed & ashamed. (back then... today I blab to anyone, *grin*)

In those 10 yrs I've tried 98% of all you'll ever read about here. I made a list once and it had at least 30-40 things on it I'd tried, longer than my arm. From every kind of diet you can name, to those ridiculous things (to me) that you see on a list, white panties,(I even cooked them in the microwave as I saw that once, to kill 'whatever'. *Sigh*) to no soaps, to rinse 5,000 times, to using a lube with sex?

I thought how ridiculous that one was and so condescending to be honest with you as if I didn't know that? I was no dummy if it dealt with sexuality. Heck could have taught it, LOL* Plus I had plenty of my own lube so that wasn't my problem. Don't wear this or that, don't eat this or that, Use this, use that, and I ended up feeling like even more of a victim with everything I couldn't do. *sigh*

Especially when NONE of those things bothered me before but I tried them, of course I did, we're so desperate, but they didn't help and I gave them all a fair trial in those 10 yrs believe me. I ended up with boxes of things that never worked. At most they were bandaid things and others made things even worse. *sigh*

Especially the darn yeast medications and yeast was never proven (or rarely) but they 'suspected' so try it, after all it might be systemic or one of those rare ones. *sigh* But "I" knew when it was yeast for petes sake, (I'd experienced enough to know) but they'd still say it might be when I didn't think so. So here use it again. And again another chemical to destroy the skin with overuse, let's fry those nerves even more. *sigh*

Let alone the steroid abuse, and while that can be marvelous short term? And not to be afraid of it, but can be a double edged sword as well if 'overused'. Yet they don't tell you that. Today I know, back then? Not, nor apparently did the ignorant doctors.

Plus in the last three years of those ten, I had to be totally celebate, the pain by then was excruciating sitting, walking, driving, let alone sex. Are you kidding? I even broke off a nice relationship I had because I felt so bad for him. Talk about feeling like one was squatting over a blow torch is almost a mild description. *sigh*

Also in those last 3 yrs I used NOTHING... by then I refused, and wouldn't even 'look' down there thinking if I didn't it would go away. It doesn't!! So please don't make that mistake and lose even more precious time. *sigh* if anything it will just get worse not better if you ignore it.

Anyway that is when I found Dr. J. Willems article and several others, (many more today) that I learned about the benefits of Estrogen cream initially and testosterone (later)

(E & T) for rebuilding skin. Women who were scheduled for surgery with him and using only the Estrace cream to help with healing after the surgery, ended up cancelling it it worked so well. (and believe me I was so desperate by that point I was close to saying cut the damn thing off)

And E & T by the way are not only for the use with LS (as some think) to restore tissue but for 'any' vulvar condition IF it's the skin that needs healed and restored. (just consider or ask why they use it for menopausal women, it restores tissue) ..Sometimes that alone can work or is often used as an adjunct with other things. (TG some doctors are aware of that and are now finally incorporating it with whatever other treatments they may suggest.

There was even a big article by the Vulvar Pain foundation (VPF) that came out about it 'after' I got well, it was their 2nd most beneficial thing in their studies after the low oxalate diet (which was 'their' baby called the Pain Project Protocol & what they pushed) so of course I felt it was biased as first in benefits but none the less the Estrogen was next best. I do have a chart with rankings, I'll try to add at the bottom.

By then with the abuse of the steroids and possibly yeast meds it's as if they so destroyed the skin that's when it turned that white/gray dead like a corpse or a severe radiation look and why the doctors think the trauma triggered the LS as the smaller lips by then had fused to the larger ones with adhesions (fusing). Previous years it was the bright red of inflammation till that mess with the steroids. But fusing is natures way of trying to heal damaged tissue... it's basically scar tissue.

So that's when I thoroughly went into studying & research about the hormones at that point and knew it was my last ditch effort, if that didn't do it I was up the proverbial creek without a paddle. I was so desperate I had nothing to lose.

I will say the only thing 'I' refused to use were the antidepressants or antiseizures. I'd read far too much by then and knew of the side effects plus a brother with major mental problems and half caused by the drugs he'll never get off of, and no way did I want to get into anything that messes with the brain, plus I absolutely knew the problem for 'me' was the skin...

I needed to heal the skin, so of course there is a bias there but those and surgery were about the only things I didn't do. I didn't want to cover up the pain I wanted to fix it. Not that it can't help others possibly and believe me I know with that pain we'll try anything but that was 'my' opinion and belief and would try anything before I'd go to those. Even surgery before the mind meds. But that's just me and as I said I knew that 'my' pain was a skin issue not elsewise.

I also knew using the 2 hormone creams it would take time, so it's definitely not a quick fix nor is it for soothing per se, (I'd have to let up in a severe flare up) but with time as the skin gets healthier there would be no more pain. And it did take time, days when I couldn't use the E., but I also knew by then the wonderful wound healing benefits of the E & T as well and knew it would take patience and persistence and I was determined. So approx six full months later (with very slow usage since I was in such horrible shape) I was finally well enough & able to try sex again.

WOW.....*grin* it was fantastic but I was scared to death believe me after 3 yrs of celebacy and severe pain, so that took me probably 6 months to mentally believe the pain wasn't back each time, till I remembered that normal women can have that occasionally too. *smile* So the emotional impact was almost as hard to get over.

I know that's not so important for many but for me it was 'my' motivating factor. I thoroughly enjoyed my sexuality previously (loved it in fact) *grin* and to have it back was a miracle. *grin*...(I was sure God must have cursed me, ridiculous in hindsite but did) *sigh* So that's where I am today, 99.999% well & for the last 7 yrs. (almost 8 in April) after those 10 horrible years. And yes I know the date, *smile* And as long as I maintain once or twice a week with a small dab of each it keeps the skin in good condition (as even Dr. Willems says it 'must' be maintained) as the E & T gives the skin the tone, color, strength and most especially it's elasticity and stretch back again, no more ripping or tearing, or splitting or pain and no flare ups so no need at all again for steroid relief. That is for symptoms and I had none.

The E & T isn't likely to be very systemic either by the way used just topically and a small peasize dab (and most doctors aren't aware of 'topical' use) and that's why any age (just a peasize dab) is likely to benefit and I used both (during the healing) in a ratio of 3 to 1 of E to T. so the T was only twice a week with more Estrace usage in the beginning. (In fact I used E alone for 4 months before I found out more info on the T. 'then' I added the T for the next two months and it did the trick) So I tapered with the topical E. as well once I was well to now once or twice a week for maintenance of the two to keep me well. With NO systemic effects by the way.

And just to say they do use the estrogen topically in youngsters and even infants with no or little if any systemic problems for labial adhesions and why I insisted on it even tho doctors said it won't work on adult ( Baloney)... it sure can and does.

Anyway once I got well, by then I'd probably read & currently have saved over 150,000 articles (and not exaggerating) on many other things as well and thought or hoped it could help someone else and why I'm 'still' here and rambling. *grin*... So that's my story in a nutshell *grin* Ok, so it's a big nut, LOL

That's just a real quick snyopsis (if you can believe it) LOL... And here's that chart from the VPF I mentioned... (I sure hope it's here) and you'll see the estrogen as the 2nd best thing after the Pain Projects protocol as significantly improved. And that was years after I used it and got well and was thrilled when this paper plus the NVA had one too afterwards about the benefits of estrogen.

I hope it helps in some small way to know that the E & T truly can be so benefical if the problem is in the skin and after all infections (including lyme, herpes, bacterial etc. etc.) have been ruled out and it's not from a pelvic floor or radiating problem. Whether used alone or along with other things in my opinion it's one of the most beneficial things (I think) one can incorporate to get the V skin healthy. But it does take time and persistence and not giving up and I can't say it will work for everyone, (of course not) but to me well worth a good trial.

That's all she wrote folks. *grin*

Hugs to all.

Dee~

....**IF REPLYING TO