Re: Alison

[Guest guest]

Right now, I'm applying Estrace and Topicort, but the

Topicort hasn't done anything after a week. I'll give

it one more week, and then just continue with the

Estrace. From everything Dee has said, your Estrace &

Testosterone regimen sounds very good!!

My pain is in several places: I have burning around

the vestibule, burning on the lower labia (mostly

right side, but sometimes left, too), and rectal

burning along my " crack " . This in addition to the

burning which I now know is from multiple fissures.

Real fun, isn't this " thing " ???

If you can't walk or do any exercises like that, you

can have your PT at least give you some stretching

exercises to do on the floor. Stretches feel SO GOOD

and help relieve the stress a tiny bit. I'll also be

joining a gym soon so that I can continue the strength

training the PTs have me do in their gym. Ain't this

ironic - my body will be in great shape, and my crotch

will be burning!

Take care. Keep me posted on how you're feeling

day-to-day.

Suzy

--- Alison wrote:

> --- Suzy,

> Thank you for your sweet words!!! I hope you are

> right...I want to

> get better ASAP so we can start our family.

>

> Good news about your PT. 15 minutes pain

> free...could lead to 1/2

> hour and so on!!! It sounds like you have a really

> good PT. How is

> the topical going? Are you applying a steroid cream

> or Estrace??..I

> can't remember. A new dr. wants me to try Estace AND

> Testosterone

> cream to get the blood flowing and thicken up the

> walls or something.

>

> Thanks for all your support! I hope you get

> continued relief from

> your exercises!! Where is your pain again?? I can't

> believe how much

> exercise you can do. I can't walk due to SO much

> discomfort. My PT

> doesn't want me really doing anything. They think

> Tae Bo might have

> contributed to my problems. I am thinking about

> getting a yoga or

> Tai Chi video tape. Lack of exercise is making me

> FAT and grumpy!!

>

> Keep me posted on your progress!!!

> Alison CA

>

>

> In VulvarDisorders@y..., suzy fromage

> <suzych263f@y...> wrote:

> > Hi, Alison! First of all, you WILL be able to

> start a

> > family. We will all send you good vibes - it's

> just a

> > matter of time. Please don't despair! Also, I

> have

> > heard of a number of women whose symptoms got

> better

> > during their pregnancy, so there's some hope

> there!

> >

> >

> > I'm hoping and hoping that you will get some

> relief

> > from this new pain very soon. Do you know any

> > relaxation techniques? I know they won't make

> your

> > pain go away, but perhaps they can help you relax

> > enough to not keep your muscles tensed from all

> the

> > anger and frustration you feel right now. Just

> ask me

> > about muscle tension - I'm the Queen of muscle

> > tension.

> >

> > Hang in there, sister. You WILL get over this bad

> > spell.

> >

> > Suzy

> >

> > --- alisci@a... wrote:

> > > Hi All!

> > > I mentioned the urethra dialation that I had

> last

> > > Saturday, which is causing

> > > additional horrible pain in new areas. Well, I

> saw

> > > another urlogist yesterday

> > > and he said it will take 6-8 weeks to " recover "

> from

> > > this procedure. That is

> > > the healing time for a NORMAL woman who doesn't

> > > already have inflammation,

> > > etc. I am in horrible pain! After some

> research I

> > > found that this procedure

> > > is totally uneccessary except when ADDITIONAL

> tests

> > > show blockage of the

> > > urethra. They also mention it is barbaric. I

> did

> > > NOT have ANY blockage, so

> > > this procedure only did additional damage. I

> have

> > > also read this procedure

> > > causes the urethra to heal with scar tissue.

> > >

> > > As you can imagaine, I am very upset. After 6

> > > months of trying to get rid of

> > > labia pain, I am now conforonted with this NEW

> pain.

> > > I am miserable. The

> > > pubic area, upper outer labia majora, clitoris

> and

> > > deep inside my pelvic

> > > aches and feels bruised. I also have burning

> > > inside, which the drs said is

> > > muscle spasms.

> > >

> > > I can thank the dr that did this procedure for

> > > setting me back in the

> > > progress I was making with PT. I am soo upset

> and

> > > angry at myself for

> > > allowing him to do this procedure. I was

> hesitant,

> > > but thought he would

> > > " know " best.

> > >

> > > I am almost at a point of just giving up. I

> thought

> > > I would be on track to

> > > try to get pregnant in November, but now I can

> not

> > > have sex due to my bruised

> > > urethra, pubic area, etc. Every time I see a

> baby,

> > > I cry. I am never going

> > > to be able to start our family, at this rate.

> > >

> > > Sorry to ramble, I feel so hopeless. I am in

> > > disbelief that my problems

> > > actually got WORSE!!!!

> > >

> > > Thanks for listening. Has anybody had this

> > > procedure???

> > > Alison

> > >

> >

> >

> > __________________________________________________

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> > Donate cash, emergency relief information

> >

>

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>

>

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[Guest guest]

Hi, Alison! I've been thinking about you all day, and

feeling so bad for the way you feel!!! From what

everyone else is saying about the meds, it seems if

you can stand the pain, your body will slowly return

to normal, so you probably don't need to get back on

the meds and then wean yourself off. I just thought

that might be easier than going " cold turkey. "

I'm feeling pretty good! Not perfect, but pretty

good, all things considered. My butt has been mostly

quiet (hallelujah!!!), my breast only hurts if I bump

against something (or my hubby forgets and gives the

wrong one a squeeze! LOL), and my vulvodynia has more

good days than bad. I still get some miserable days

each cycle, so I'm going to talk to my new GYN next

week and see what's going on with my hormones. My

vulva doc agrees that I am probably seeing the effects

of lowered estrogen at certain times of the month,

esp. since I am perimenopausal. Who knows, but it's

worth an investigation, I say. My vestibulitis,

though, is pretty much under control (I better not

jinx myself!), although I'm still using Estrace and

atropine on it. It's not perfect, but getting there.

You take care of yourself, and I'm sending

major-league good thoughts your way. Please stay in

touch!!

Love,

Suzy

--- alisci@... wrote:

> Hi!!

>

> I want to write you a LONG post to say how happy I

> am for your great biopsy

> results!!

>

> Do you REALLY think I have to go back on them? I

> think I am just going to

> stay off of them and see what happens. I weaned

> myself off in about 5 days.

> I don't even see that dr. anymore. I took some

> Tylenol and the nerves seem

> less on fire!! So, I guess Tylenol is better than

> another prescription

> medication. My new obgyn doesn't think it is a good

> idea to take meds while

> pregnant. I would ordinarily agree, but I was a 10

> for the last few days.

>

> Please write and tell me how you are!! I hope you

> are still on a roll to get

> better asap!!

> Thanks,

> Alison CA

> I stayed home today ( so I can write on the computer

> today)!

>

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