Re: Frustrated with lack of diagnosis

[Guest guest]

Maxine,

The Lidocaine can be compounded with a base that is less

irritating. Also, have you tried sitz baths? When I first

started out with this at the request of my doctor I was very raw

and irritated for a few days to the point of making me cry.

After a while it started to help heal the area a little bit.

Yes, I am able to get my pelvic exams and pap smears every year.

If you have a good primary care physician see if they can help

you get in to the dermatologist sooner. I'm curious to know one

thing. What is the name of this doctor that he wants you to

see? The reason I ask is because there is a doctor (can't

remember where she's located) by the name of Libby (boy

I hope I got that name right because I've not seen a topic about

this issue come up in a while) that is a dermatologist that is

experienced with vulvar issues.

Kristy

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[Guest guest]

Years ago I tried a lidocaine mixture but I didn't use it regularly, will have to get some from the Dr. The dermatoligist is in Toronto. Her name is Dr. Ryter or Richter, not sure how to spell it. I live near Toronto and the wait times to see specialists is crazy. It took me 5 months to see the other specialist and I have been waiting since June to see a pain management Dr. for other pain issues I have also undiagnosed for 2.5 yrs. There has to be someone who can help.Kristy Sokoloski wrote: Maxine,The Lidocaine can be compounded with a base that is lessirritating. Also, have you tried sitz baths? When I firststarted out with this at the request of my doctor I was very rawand irritated for a few days to the point of making me cry. After a while it started to help heal the area a little bit.Yes, I am able to get my pelvic exams and pap smears every year.If you have a good primary care physician see if they can helpyou get in to the dermatologist sooner. I'm curious to know onething. What is the name of this doctor that he wants you tosee? The reason I ask is because there is a doctor (can'tremember where she's located) by the name of Libby (boyI hope I got that name right because I've not seen a topic aboutthis issue come up in a while) that is a dermatologist that isexperienced with vulvar issues.Kristy

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[Guest guest]

Maxine,

First of all, premarin caused me to have a HORRIBLE reaction and is

usually not indicated for vulvadynia. Estrace cream, however is, and

is worth trying. I highly recommend you go to www.nva.org and get a

list of their docs and see one of them. It sounds like your doc

hasn't tried any of the oral meds (elavil, neurontin, etc.) or the

other topicals (estrace), so there are lots of things to try. Also,

physical therapy can be VERY helpful for some women and if you indeed

have vaginismus the treatment plan he put you on is certainly not one

I've heard of (I'm a marriage & family therapist with some training

in sex therapy) and there are MUCH BETTER interventions for

vaginismus. Take care and don't give up.

Lindsey

>

> I am fairly new here, have been lurking for the past couple of

months.

>

> I will start with a brief history. I first started having pain

with

> intercourse in my early 20's but wasn't that bad, I had chronic

yeast

> infections which I think may have started it. The pain is only at

the

> vaginal opening. I am now 34 and the past few years sex has been

> impossible. It feels like my skin is tearing. After seeing many

> doctors who said there is nothing wrong I was finally referred to a

Dr.

> that specializes in Vulvadynia and Vaginismus. I thought my

problem

> would be fixed. He told me all my problems were from vaginismus

> because when he examined me I would tighten up because it was quite

> painful. I know the tightening is a result of the pain. He gave

me

> some things to try -premarin for 3 months, lidocaine 2x a day for 6

> months and using my fingers while doing kegals to get me used to

having

> something inside of me. After 6 months with no improvement he

lasered

> off the flap of skin at the vaginal opening. He told me that would

fix

> everything. Well 4 months later I feel exactly like I did before

the

> laser surgery. I had my follow up today (I drove 2 hours each way

for

> my 5 min. appt ahhh...) and he said there is nothing he can do to

help

> me, that I am not normal because the lidocaine should take the pain

> away but all it does is irritate me for hours. It started really

> irritating me in August so I have stopped using it. He said the

> lidocaine is suppose to calm the nerves but I think it is irriating

me

> because the skin is raw. My skin is still sore and irritated and

in

> the past year isn't any better. The skin has been torn a couple of

> times by mistake by my husband just touching me.

>

> This is taking a huge toll on my marriage. We haven't had sex in

years

> (well except to tear it hoping that the doctors can see something)

and

> my husband has just about had it. If I don't get this resolved

soon I

> know my marriage is over. He already has had one affair but that

is a

> whole other story.

>

> He is referring me to a dermatologist who specializes in vulvar

> disorders. I really hope she can help. it is going to take a

couple

> of months to get an appt. though.

>

> Are you able to have pap smears and exams with your problems? My

last

> pap smear 1.5 yrs ago was so painful that I skipped it this year, I

> just can't handle the pain.

>

[Guest guest]

Maxine,

Lidocaine didn't work for me either - there are SO many other options!

You need to get to a different doc, ASAP. You should be checked for

lichen sclerosis or other skin conditions, that may be a cause of the

tearing. Estrace should help with that.

Melinda

[Guest guest]

Hi Maxine, I am you to a " T " about the pain situation. Also paps are horribly painful for me, I just went 3 years without getting one, had one scheduled, and due to my IC there was no way I could even think about it. I'm sorry I'm not any help, I'm seeing a specialist in Nov. I just want you to know, I know how you feel. My husband doesn't do well with these problems either.

I am fairly new here, have been lurking for the past couple of months. I will start with a brief history. I first started having pain with intercourse in my early 20's but wasn't that bad, I had chronic yeast infections which I think may have started it. The pain is only at the vaginal opening. I am now 34 and the past few years sex has been impossible. It feels like my skin is tearing. After seeing many doctors who said there is nothing wrong I was finally referred to a Dr. that specializes in Vulvadynia and Vaginismus. I thought my problem would be fixed. He told me all my problems were from vaginismus because when he examined me I would tighten up because it was quite painful. I know the tightening is a result of the pain. He gave me some things to try -premarin for 3 months, lidocaine 2x a day for 6 months and using my fingers while doing kegals to get me used to having something inside of me. After 6 months with no improvement he lasered off the flap of skin at the vaginal opening. He told me that would fix everything. Well 4 months later I feel exactly like I did before the laser surgery. I had my follow up today (I drove 2 hours each way for my 5 min. appt ahhh...) and he said there is nothing he can do to help me, that I am not normal because the lidocaine should take the pain away but all it does is irritate me for hours. It started really irritating me in August so I have stopped using it. He said the lidocaine is suppose to calm the nerves but I think it is irriating me because the skin is raw. My skin is still sore and irritated and in the past year isn't any better. The skin has been torn a couple of times by mistake by my husband just touching me.This is taking a huge toll on my marriage. We haven't had sex in years (well except to tear it hoping that the doctors can see something) and my husband has just about had it. If I don't get this resolved soon I know my marriage is over. He already has had one affair but that is a whole other story.He is referring me to a dermatologist who specializes in vulvar disorders. I really hope she can help. it is going to take a couple of months to get an appt. though.Are you able to have pap smears and exams with your problems? My last pap smear 1.5 yrs ago was so painful that I skipped it this year, I just can't handle the pain.

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[Guest guest]

Premarin didn't work and gave me bad acne. I just need something to toughen up the skin and I think I will be ok. I really don't think I have vaginismus, I just happened to clench because the Dr. was causing me pain so he said thats what I have. I used to try to have sex but have given up, it has really made me avoid any sexual contact because I now I associate sex with pain. My husband won't go to counselling, he said i am the one with the problems so I need to fix them. I have other chronic pain issues that have made me depressed. I was on neurontin for nerve pain in my arms but it didn't help my vulvar pain. The side effects were so bad that I had to stop after 5 months because I couldn't think or speak properly. Another Dr. recommened Elavil for my arm nerve pain but my family doctor said there are too many side effects and she didn't think it would help. My only pain is where the skin is irritated I suppose I am

fortunate that is my only pain.

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[Guest guest]

,

Sorry you haven't been able to find a med that works for you - I was

not able to use any of the oral meds. either but thought they might

work for you.

Where are you in Ca.? My hubby is from Nova Scotia.

Melinda

[Guest guest]

,

Sorry you haven't been able to find a med that works for you - I was

not able to use any of the oral meds. either but thought they might

work for you.

Where are you in Ca.? My hubby is from Nova Scotia.

Melinda