Re: To Seema -- maybe a clue

[Guest guest]

Seema --

Quick answer for now (I'm going out the door and have much more to say...)

for Levsin, which remember was prescribed for me for possible bladder

problems but may also have other effects, they gave me a low dose -- I take

HALF of a .125 mg (notice the decimal point before the 1) tablet under my

tongue at morning, the other half at night, and an extra one if I feel major

symptoms. However, I haven't been taking this religiously, just rather when

I feel something going on.

Hope this helps! More later.

By the way, you are in Arizona? Did you ever see Dr. ??

best,

[Guest guest]

Hi ,

I know better not to get my hopes up about things, but this

sounds like good news!! It kind of confirms what we were saying

about the muscles being tight and making things worse. I kind of had

a theory about what happened to me - I thought I'd run it by you. I

used Monistat - had severe burning. I probably had some reaction to

it which made my muscles tense up. Since I was not able to have sex,

my boyfriend and I tried oral sex 1 month later. The next day -

white discharge. My boyfriend even used listerine before doing this

on me. Since my muscles were so tight, I don't think I was able to

fight off any bacteria - probably causing the discharge.

I was just about to write you because I noticed something in the

past few days. Like I said, it's probably a fluke, but I thought I'd

share it with you. Remember how I told you the Cleocin wasn't

working. Well, on Wednesday - I started noticing less discharge. I

had been on the Cleocin for five days at this point as well as the

Suma for 4 days. I also was using Multi-Gyn in the morning. Since

then, the discharge is still much less. I have five days left of the

Cleocin. It reduced a little bit of the pain but a lot of the pain

is still there (I believe from the muscles). Anyways, I have heard

that women who do get on the Cleocin - after they get off, the

relapse rate is high: 30%. What do you think I could do to make

sure the discharge stays away? Should I just continue using Multi-

Gyn and my lacto supplements? I really am wondering about trying a

muscle relaxer (smooth muscle!!). They had given me Flexeril - which

I believe is skeletal muscle relaxer and that did not help. Anyways,

I thought I'd share that with you too in case you wanted to try the

Cleocin. I have always cultured negative for bacterial infection,

but the last culture showed high E.coli and high gamma strep.

Apparently, beta strep is what shows up as an infection and gamma

strep is normal so the other labs never commented on it. I know not

to get my hopes up or jinx anything - I just wanted to share it with

you. I'm sorry about the fight with your boyfriend but happy about

the clue you found!!

Love,

Seema

> Seema --

>

> Just chiming in with the latest development in my continuing saga

of trying

> to figure this out, since it seems like we have a lot of similar

stuff going

> on...

>

> Last night I had a pretty bad emotional situation with my

boyfriend, one that

> had us both shaking and upset. During all the emotional stress, I

realized I

> was experiencing INTENSE vaginal burning. A real flare, with a

pretty

> noticable cause. Does this ever happen to you; do you get flares

when you

> get emotionally upset?

>

> I decided to try something as an experiment: my doc had given me

Levsin,

> which is a smooth muscle relaxant, to fight possible bladder

problems. (The

> bladder and the intestines and the uterus -- all non-skeletal

muscles except

> the heart are what they call " smooth " muscle.) I knew that when I

got upset

> my intestines go all haywire, so I wondered if my bladder or

uterine muscles

> were also getting upset in the same way and if that triggered the

burning.

>

> I took it and within 10 minutes the burning was noticably less; in

an hour it

> was gone.

>

> Now, I don't know how big a deal this is -- it may be only one

small part of

> the picture -- but I think it's significant. It was nice, in a

way, to have

> such a clear experiment available (although I would rather not have

had the

> fight with my boyfriend!) Stay tuned for further developments.

And I hope

> you have been having a good day...

>

> best,

>

[Guest guest]

Hi ,

I forgot to ask you - what dose are you on (how many mg.)? Also I

forgot to answer your question - so far, I haven't noticed increased

burning after getting emotionally upset. It's been the other way

around for me - increased burning first and then I get irritable and

emotional!!!! Thanks.

Seema

> > Seema --

> >

> > Just chiming in with the latest development in my continuing saga

> of trying

> > to figure this out, since it seems like we have a lot of similar

> stuff going

> > on...

> >

> > Last night I had a pretty bad emotional situation with my

> boyfriend, one that

> > had us both shaking and upset. During all the emotional stress,

I

> realized I

> > was experiencing INTENSE vaginal burning. A real flare, with a

> pretty

> > noticable cause. Does this ever happen to you; do you get flares

> when you

> > get emotionally upset?

> >

> > I decided to try something as an experiment: my doc had given me

> Levsin,

> > which is a smooth muscle relaxant, to fight possible bladder

> problems. (The

> > bladder and the intestines and the uterus -- all non-skeletal

> muscles except

> > the heart are what they call " smooth " muscle.) I knew that when

I

> got upset

> > my intestines go all haywire, so I wondered if my bladder or

> uterine muscles

> > were also getting upset in the same way and if that triggered the

> burning.

> >

> > I took it and within 10 minutes the burning was noticably less;

in

> an hour it

> > was gone.

> >

> > Now, I don't know how big a deal this is -- it may be only one

> small part of

> > the picture -- but I think it's significant. It was nice, in a

> way, to have

> > such a clear experiment available (although I would rather not

have

> had the

> > fight with my boyfriend!) Stay tuned for further developments.

> And I hope

> > you have been having a good day...

> >

> > best,

> >

[Guest guest]

I completely believe this, the problem is , when you have this problem it is so hard not to be stressed. That could be part of the reason why some people(depending on why they have vulvar problems) are helped by anti depressants.

Read Intuitive Healing by Beth Moran, she is an RN, CNP and this is the sort of thing it talks about, listening to yourself.

Take Care.

Katprof2@... wrote: Seema --Just chiming in with the latest development in my continuing saga of trying to figure this out, since it seems like we have a lot of similar stuff going on...Last night I had a pretty bad emotional situation with my boyfriend, one that had us both shaking and upset. During all the emotional stress, I realized I was experiencing INTENSE vaginal burning. A real flare, with a pretty noticable cause. Does this ever happen to you; do you get flares when you get emotionally upset?I decided to try something as an experiment: my doc had given me Levsin, which is a smooth muscle relaxant, to fight possible bladder problems. (The bladder and the intestines and the uterus -- all non-skeletal muscles except the heart are what they call "smooth" muscle.) I knew that when I got upset my intestines go all haywire, so I wondered if my bladder or uterine muscles were also getting upset in the same way and if that triggered the burning.I took it and within 10 minutes the burning was noticably less; in an hour it was gone.Now, I don't know how big a deal this is -- it may be only one small part of the picture -- but I think it's significant. It was nice, in a way, to have such a clear experiment available (although I would rather not have had the fight with my boyfriend!) Stay tuned for further developments. And I hope you have been having a good day...best,*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

On Sun, 07 Apr 2002 00:01:46 -0500 (EST), Katprof2@... wrote:

>Last night I had a pretty bad emotional situation with my boyfriend, one that

>had us both shaking and upset. During all the emotional stress, I realized I

>was experiencing INTENSE vaginal burning. A real flare, with a pretty

>noticable cause. Does this ever happen to you; do you get flares when you

>get emotionally upset?

Sweat - salty sweat?????

Ora

[Guest guest]

Hi ,

I forgot to tell you - I saw Dr. for 10 months. He did not

help me - it took him 8 months to control the DIV and that was just

through the use of topical steroids. He does not believe in physical

therapy - he told me that only helps people with vaginismus. He

really was not helping me, so I stopped going. Although, he is the

only specialist in Arizona so I am dreading having to go back to him,

but I may have to as I am not getting better.

I am really depressed and broke down crying at breakfast this

morning. I just can't go through life like this anymore. I will try

to get a prescription for Levsin - I asked my boyfriend about this

drug. He said it was non-addictive, unlike Valium. He also said it

can act like an antacid (that's the part I don't like!!). Do you also

live in Phoenix - just wondering if you have a better PT you know of?

Thanks.

Love,

Seema

> Seema --

>

> Quick answer for now (I'm going out the door and have much more to

say...)

> for Levsin, which remember was prescribed for me for possible

bladder

> problems but may also have other effects, they gave me a low dose --

I take

> HALF of a .125 mg (notice the decimal point before the 1) tablet

under my

> tongue at morning, the other half at night, and an extra one if I

feel major

> symptoms. However, I haven't been taking this religiously, just

rather when

> I feel something going on.

>

> Hope this helps! More later.

>

> By the way, you are in Arizona? Did you ever see Dr. ??

>

> best,

>

[Guest guest]

Hi ,

Actually, I did check online and Levsin does reduce stomach acid:

http://www.ahealthyme.com/topic/topic100590452. You don't upset me

at all - I appreciate your input. I trust my boyfriend as he has had

6 years of experience in pharmacy - 3 of which are at a hospital. So,

I think he is much better than a Walgreen's pharmacist - he also

reaffirmed this in his drug books!! So far, he has been dead right on

all of the medications.

He just says that he recommends Valium when it's an acute thing -

when you need it once in awhile, but like you said, you develop a

tolerance and then constantly need to increase the dose. He is also

an expert in pain management and does say that the pain patient does

not usually get addicted because they don't get the euphoria but

rather they feel normal. He has encouraged me before to try some pain

medications, but I refuse. It may be hard to understand, but I come

from a family where even Tylenol was never used. Also, I have drug

hypersensitivity - meaning I don't tolerate drugs too well. So, it's

not my family or my boyfriend who discourages me not to take pain

meds. I, personally don't want to - there are several women with

vulvodynia who have told me that they became dependent on a lot of the

pain medications - I don't want that happening to me. I just don't

want to be popping pills constantly. Some people can handle drugs

well - I am not one of them (keep in mind, I am 89 pounds, small

framed and have a SENSITIVE stomach!!).

Anyways, I thought you may want to know about the Levsin and the

stomach acid production. Some of us are alkaline so we don't want to

decrease acid but increase our acid intake.

Love,

Seema

> Seema, I just wanted to tell you something that you said in your

email, for one, just because your boyfriend or family members are in

the medical field or they are worried about addictive medications,

son't mean we can't take them especially if they help us. Most people

who need pain medication or medications like Valium don;t get addicted

to them. I took a course last year on Addictive medications and the

pain patient and found that people who truly need these meds do not

get addicted to them, there bodies may become tollerated to them or

dependent on them but not addicted. If the Valium helps you or pain

meds help you then you need to take them and not worry about what

others think about them. Also I take narocotic pain meds and I can

take them or leave them, I take them because I need to because I am in

pain not because I want to. Also I take a medication that has the

levsin in it and it does not work like a antacid, I have never heard

of this. I am also in the medical field and have never heard of this.

I looked in my drug books and it did not say anything like this about

this medication. But Seema, you need to do whatever you can to make

yourself better and comfortable even if it means taking a medication

that can be addictive in some people. I even take Ativan, have been

on it off and on for years, more off the on. You might wan to look

into some info on the chronic pain patient and narcotic pain meds and

you will find a ton of info saying that chronic patients do not become

addicted. Any pain specialist will tell you this too. Now I could be

way off base here, but it just seems to me that you are maybe not

getting adiquate treatment because of others worrying about addiction.

So please don't suffer just because some other people may not like

what meds you are taking. Again I amy be way off, but I just wanted

to give you a little support.

> Sorry if I was off base or upset you in anyway.

> Traci adi

> ----- Original Message -----

> From: seema_sura

> To: VulvarDisorders@y...

>

>

[Guest guest]

Seema, I just wanted to tell you something that you said in your email, for one, just because your boyfriend or family members are in the medical field or they are worried about addictive medications, son't mean we can't take them especially if they help us. Most people who need pain medication or medications like Valium don;t get addicted to them. I took a course last year on Addictive medications and the pain patient and found that people who truly need these meds do not get addicted to them, there bodies may become tollerated to them or dependent on them but not addicted. If the Valium helps you or pain meds help you then you need to take them and not worry about what others think about them. Also I take narocotic pain meds and I can take them or leave them, I take them because I need to because I am in pain not because I want to. Also I take a medication that has the levsin in it and it does not work like a antacid, I have never heard of this. I am also in the medical field and have never heard of this. I looked in my drug books and it did not say anything like this about this medication. But Seema, you need to do whatever you can to make yourself better and comfortable even if it means taking a medication that can be addictive in some people. I even take Ativan, have been on it off and on for years, more off the on. You might wan to look into some info on the chronic pain patient and narcotic pain meds and you will find a ton of info saying that chronic patients do not become addicted. Any pain specialist will tell you this too. Now I could be way off base here, but it just seems to me that you are maybe not getting adiquate treatment because of others worrying about addiction. So please don't suffer just because some other people may not like what meds you are taking. Again I amy be way off, but I just wanted to give you a little support.

Sorry if I was off base or upset you in anyway.

Traci adi

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

From: seema_sura

To: VulvarDisorders

*****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****

[Guest guest]

Seema, I see now about the drying up of secretions, which it does dry you up, that is for sure. And for me personally, I would beleive a pharmacist about drugs and side effects before I would take any word over my doc, and this is because doctors do not know all of the side effects of medications and I persoanlly would not expect them too. They usually hear about a drug from a pharmaceutical representative who has brought them a whole bunch of pens and calendars and note pads and little gadgets. A pharmacists on the other hand has to know all about the medications and the chemical structures and the interactions with other medications. I have personally had many docs tell me to take this drug , it is the safes drug there is only to find out later at the pharmacy that it isn'tor looking it up on my own and finding out that it is not as safe as this doc made it out to be. I ahve also had reactions to medications that my doc had never heard before, like for instence, he told me to try Neurontin, he told me this was one of the safest drugs out there, well it made me bleed vaginally constantly, like I was having a period that would never stop. Now I looked it up only to find that this was a side effect opf the medication, So I asked me doc about it, he had never heard of this, bit I told him it was listed as a side effect of the medication so we stopped it and the bleeding stopped, so after a week we tried it again, and again, I started bleeding again, so I stopped it and the bleeding stopped, so this is just one example of the fact tha doctors do not know how all of these meds work or their side effects and I feel it is up to us as patients to find out on our own. Now you can choose to beleive what you like my only point is to make sure you get all of the information you can. It does not matter how long someone went to school or what they have done. it all comes down to documented to proof and that is what I look for. But that is just me. But I can also tell you that with these meds that you can get a tolerance to that you do nto always need higher doses constantly. As for Valium and stuff like that you find a dose that works for you and go with it and if over time you need a stronger dose then you move up, I can tell you from experince that it is better to take meds wether they are addictive or not, then to suffer constantly from one day to the next. I understand that you are small and have a sensative stomach but aren't you sick of suffering? I really feel bad for you because you really are having a hard time with this. I will tell you that pain medication has given me my life back. I have end stage interstitial cystitis as well as VV. Now this sporonox seems to help with my VV. But the pain medication helped me get my life back from IC. I have three small children and I could not enjoy my kids. I could not read them a book, I could not do anything until I got on pain management. Pain management saved my life along with many others. This may be something you might want to try, just to see if it will make you feel better. I don't understand the endless suffering if you can take meds to help you. Alot of people have a hard time taking meds but you just have to find out what med will work for you. I dont constantly pop pills. But if I had to I would to be able to have a better life. I do not get the euphoria feeling from my pain meds I never have. I also could take them or leave them, I take them because I have pain not because it is time to take one. I think if you manage your medications wisely then you can take them wisely.

I don't know much about this alkaline theory but from what I have heard from it with IC our bodies are way too acidic, so how could this be that VV is from too much alkaline? how coulf you have both and one be from the other? Levsin just helps dry things up. that I did know, but I dont hink it stops stomach acid production completely, if that was the case they would use it in people with GERD. But anyway Seema, these are just my personal opinions from my personal experiences and nothing more, I hope you would appreciate it as that. I just think maybe if you found a pain medication that helped you or any med that helped you make your symptoms go away or made them more tolerable that you would not have to suffer and from your posts you seem to be suffering alot. I personally don't see the point when you could take a medication that would help you. Also do you think you could take a medication if you had cancer or diabetes or something like that? I am just wondering what your fear is in taking medication, just trying to understand you a little bit better. is it because you came from a family who did not take medications that you have some sort of fear in taking them? And also could you please tell me about this acid thing? I would think we had too much acid and we would need to get rid of this acid not need more of it. This I do not understand at all. Especially since IC seems to worsen with acid, I know you do not have IC but for most of us IC and VV go hand in hand.

Thanks for all your input, I appreciate it. I just hoe one day you can find something that you feel comfortable taking so that you dont suffer so much, I just dont understand why you would rather suffer then take something that might help.

Traci

Re: To Seema -- maybe a clue

Hi , Actually, I did check online and Levsin does reduce stomach acid: http://www.ahealthyme.com/topic/topic100590452. You don't upset me at all - I appreciate your input. I trust my boyfriend as he has had 6 years of experience in pharmacy - 3 of which are at a hospital. So, I think he is much better than a Walgreen's pharmacist - he also reaffirmed this in his drug books!! So far, he has been dead right on all of the medications. He just says that he recommends Valium when it's an acute thing - when you need it once in awhile, but like you said, you develop a tolerance and then constantly need to increase the dose. He is also an expert in pain management and does say that the pain patient does not usually get addicted because they don't get the euphoria but rather they feel normal. He has encouraged me before to try some pain medications, but I refuse. It may be hard to understand, but I come from a family where even Tylenol was never used. Also, I have drug hypersensitivity - meaning I don't tolerate drugs too well. So, it's not my family or my boyfriend who discourages me not to take pain meds. I, personally don't want to - there are several women with vulvodynia who have told me that they became dependent on a lot of the pain medications - I don't want that happening to me. I just don't want to be popping pills constantly. Some people can handle drugs well - I am not one of them (keep in mind, I am 89 pounds, small framed and have a SENSITIVE stomach!!). Anyways, I thought you may want to know about the Levsin and the stomach acid production. Some of us are alkaline so we don't want to decrease acid but increase our acid intake. Love,Seema> *****END OF MESSAGE*****-------------------------------------------------To post message: VulvarDisorders To Subscribe: VulvarDisorders-subscribe Unsubscribe: VulvarDisorders-unsubscribe List owner: VulvarDisorders-owner *****