Introduction

March 2, 2000

Welcome Beth, It's good to have you here but of course sorry for the reason

you need to be here. It's a great group of gals who are very supportive and

extremely informed. It's great to be able to hear all of the different

things they've tried, some with good results, some not. It really helps to

communicate with others that have the same problems. Warm regards, Donna

March 5, 2000

Hello Beth A. & everyone~

Not to get into the icky subjects but Beth A., I noticed you had a reaction

to your husband's sperm but didn't really mention what it was? I have one

too, it makes the burning intensified quite a bit, pouring that " salt " into

the wounds. I have pain with sex but regardless I attempt it anyway twice a

month. We MUST use condoms each time, to not is scary to me.

My question to everyone is that does anyone else have this reaction too? Is

it an allergy or an irritant?

Thanks as ever for all the help ladies,

B.

March 5, 2000

Hello Beth A. & everyone~

Not to get into the icky subjects but Beth A., I noticed you had a reaction

to your husband's sperm but didn't really mention what it was? I have one

too, it makes the burning intensified quite a bit, pouring that " salt " into

the wounds. I have pain with sex but regardless I attempt it anyway twice a

month. We MUST use condoms each time, to not is scary to me.

My question to everyone is that does anyone else have this reaction too? Is

it an allergy or an irritant?

Thanks as ever for all the help ladies,

B.

March 7, 2000

**From: White4Art@...

Welcome Beth, It's good to have you here but of course sorry for the reason

you need to be here. It's a great group of gals who are very supportive and

extremely informed. It's great to be able to hear all of the different

things they've tried, some with good results, some not. It really helps to

communicate with others that have the same problems. Warm regards, Donna**

Thanks for the warm welcome, Donna. I'm glad to have found this group.

Beth A

March 8, 2000

In a message dated 3/5/00 12:42:47 PM Eastern Standard Time,

llinda900@... writes:

**Beth A., I noticed you had a reaction to your husband's sperm but didn't

really mention what it was? I have one too, it makes the burning intensified

quite a bit, pouring that " salt " into the wounds.**

Itching and burning!

Beth A

March 8, 2000

Rita:

Poor baby, I will keep you in my prayers. Had a biopsy which caused

vestibulitis , with which I've been dealing since 1998. I'm in limbo land now,

not much the medical community can do for me anymore, everything else seems to

check out fine (no cancer, just a hyperplasia) and so I'm just doing what I can

to keep myself comfortable, but you've been through the mill. Wish I could

help, I know prayer will, but wish I could touch you and say be will. Keep up

your courage and know that someone thinks of you.

Regards,

JoanB.

--- RitaD@... wrote:

> Hello. My name is Rita. I have joined this group to help pass along info on

> my situation as well as hopefully find others out there dealing with same

> issues. I do feel alone. I am dealing with Vulva cancer in the beginning

> stages. Have had surgery, partial vulvectomy and laser site removal, all to

> no avail. I have also been told, by the doctors, that more surgery should be

> done, will eventually need reconstructive surgery and the topper is: it WILL

> come back. So for the time being, I have chosen not to do anything, allow

> nature to take its course.

> Is there anyone out there dealing with similar issues? Also, this

> generally affects women over the age of 50, I just turned 40, have been

> dealing with all this since Jan. 1996. Hope this is enough info for an

> introduction.

>

=====

Cheers

JB Bulharowski

--------------------------

jbulhar@...

--------------------------

__________________________________________________

March 9, 2000

Hi Rita, Welcome. I'm so sorry you have cancer. I know it has been

discussed here but don't know how many of us have or have had it. What were

your symptoms? Hope you can find some comfort here. Warm regards, Donna

April 5, 2000

,

You've definately come to the right place. My name is . I have also

been suffering for about 5 years. It gradually got worse. I've been married

for just about a year, and i have had hardly any sex life. My poor husband.

Although he has been great through this all. I too thought it was all in my

head. I thought i was crazy. I felt all alone too. My husband felt like i

just wasn't attracted to him or something. i even made us go to couple therapy

thinking it really was in my head. Last September, i gave my gyn all the

details. I had told him a few times before, but never the full details so he

never diagnosed me. As soon as i told him, he did what's called a " Q-tip test " .

Which basically he takes a qtip and touches it to the vestibular glands. Boy

was that painful. He knew right away that i had vulvar vestibulits. I've had

it for like 5 years but never knew. The first thing he did was put me on

steroid cream. I went on that for about 3 weeks, but it did!

nothing. Then i went on antidepressants which is supposed to help nerve pain.

I went on zoloft for a week but had a bad reaction to it and was then put on

elavil for about 2 months. It didn't help me either. (By the way-different

things help different people). My last resort was surgery. I was so scared.

It was a minor surgery. I had it done March 24 (almost 2 weeks ago). The whole

thing took like 20 minutes and it was same day procedure. I was so nervous, but

i'm not in any pain now anymore. However it takes about 8 weeks in all to heal

so of course i don't know if i will still be in pain during sex. I shouldn't

though. I just went to the doctor yesterday for a post op exam and he said i am

healing perfect. So in about 4 weeks i should know if the surgery was

successful. Although i am very hopeful, it seems very hard to believe i will

have no pain during sex. Some people have pain 24/7, but i only had pain on

contact. So we'll see what happens. Anyway, i'm !

sorry this is so long, but i wanted you to know that you are not alone and you

are not crazy. If you ever need to talk, you can email me anytime either on

here or personally.

Hope everything goes well,

May 20, 2000

I live in Canberra, Australia

Hi Alison

Nice to see another Aussie on the list, My name is Trish and I live in

Ballina, NSW

I have had vestibulitis for 18 months and at the moment I am not in that

much pain so I am enjoying the breather....I went off the pill for 4 months

and was heaps better and only started back on a new pill last month , I have

had a couple of flare ups with it but nothing like the other pill I was on

so hoping it continues...

Hope you are feeling better

Trish

Mum to Danny (13) nds and Jodie (9) ds

ICQ# 58700171

Introduction

January 8, 2001

Hi!

I am resending this message because I didn't it appear in my inbox, so

I have no way of knowing if it was transmitted to the list. I neglected

to mention that my fibroids are subserosal :-)

Heidi

Hi!

I have been lurking for about a week. I would like to introduce myself

to the group. :-)

I am 46 years old (will be 47 in July) and was diagnosed with a fibroid

tumor in October, 1999. At that time it was under 2 cm. Actually,

my menstrual cycle changed in late 1998 from 8 or 9 days of bleeding

every four weeks to about 10 days of bleeding every three weeks.

In March or April of 1998, I had an ultrasound which showed a thickening

of the endometrial lining. However, the radiologist commented that

I should have a follow up ultra sound because the increase of the lining

could be the normal result just before a period.

I had another ultrasound done about two months ago and it revealed

that I now have two fibroids. One is about 1.60 or so and the other

is closer now to 3 cm. My periods are still every three weeks, but

I am bleeding and spotting for almost two weeks. My bleeding isn't

heavy - just irregular and my periods are more painful than they

used to be.

I have not had a D & C. I have had two endometrial biopsies. The

last one was done about a year ago. The doctor had indicated that

I was *definitely* in menopause until that time. He had been saying

that I was in menopause since I was about 41. Apparently, the

endometrial biopsy showed that my estrogen level was high. However,

he had prescribed a combination of Premarin and Provera at the time,

so I would assume that the extra estrogen would have affected the

results of the endometrium.

In 1998, when I had my first endometrial biopsy the doctor said that I

had polyps, because a piece of one had been included in the sample. <s>

I was so dizzy and bloated while taking the Estrogen/Provera during late

1999. I really wondered if maybe Prometrium would help. I did some

research on the web and found out that Prometrium was much better than

Provera. ( I mentioned natural progresterone, but he would not hear of it.)

Also, I thought perhaps the Prometrium would thin out the lining.

So, I have been taking Prometrium for the first 10 days prior to the

onset of my period for about a year now. (Actually, my last two

ultrasounds showed that there was no thickening of the lining of the

uterus.)

I am now at a point where I am probably facing a D & C and feel

very frightened. I suffer from a very severe heart condition.

In 1992 I was given a tilt table test. The test was positive for

autonomic nervous dysfunction. Apparently, my blood pressure and heart

rate are unstable when I am tilted in different directions. (This explained

why I could no longer stand for prolonged periods of time and was so

fatigued.) I had been on a beta blocker since 1983 to keep my pulse rate

down, and in 1992 Rythmol, a potent antiarrhythmic drug was introduced.

In 1997 I was diagnosed with lupus after having a long bout with a sinus

infection. I ended up losing about 25 lbs and lots of hair within about

seven weeks. Autoimmune tests revealed that I had lupus. The ENT

wanted to do sinus surgery, but the cardiologist said that I could suffer

a stroke under a general anesthesia.

So, it is really risky for me to have general. I asked the cardiologist

about a caudal/spinal and he said that this was equally risky because

of my autonomic nervous system problem. It would be difficult to keep

the blood pressure up during the spinal as well. <s>

I don't know really what to do at this point. I really am confused as

to why these tumors have grown at this point in my life. Both my mom

and older sister had fibroids and had hysterectomies. (Actually, my

mom had a fibroid tumor when she was pregnant with me.)

Any and all input would really be appreciated.

Warmly,

Heidi

January 8, 2001

Heidi,

Do see if hysteroscopic resection with local anaesthetic is suitable for you, as Dana suggests.

If not, look into having UAE with conscious sedation.

You mention a thickened endometrium. Your heavy bleeding may be due to other causes than the fibroids and then the above treatments may not solve your problems

Could the autonomic nervous dysfunction be related to anaemia due to the heavy bleeding? Also, I don't know what effect beta-blockers and other drugs for the heart and circulation have on the menstrual cycle.

January 9, 2001

Heidi,

I see from your second letter that hysteroscopic resection isn't as option as you have subserosal fibroids. These could be removed by myomectomy, but that involves general anaesthesia and a difficult recovery period.

I don't know whether any form of myolysis (see archive messages about MRI assisted cryosurgery) can be done under local anaesthaesia or - like Uterine Artery Embolization - with conscious sedation. Perhaps some more knowledgeable person on the list can comment?

I wasn't reading your letter very carefully when I commented on your thickened endometrium. You say it was likely to have been caused by hormonal treatment and has since cleared up. But I still think with all your health problems that there could be another cause of heavy bleeding apart from your fibroids. And fibroids on the outside of the womb shouldn't cause much period problems such as you describe, especially small subserosals. Although you need to keep a careful eye on the growth of the fibroids, maybe treatment of the fibroids is not a priority treatment at present and/or maybe killing the fibroids is not going to improve your menses. (You mentioned polyps; they would cause menstrual difficulties.)

Reflexology is supposed to be helpful for hormone balance, so if you can find an experienced reflexologist you might try that therapy alongside your conventional treatments.

January 12, 2001

Thank you so much for this information. You have given me a lot to

think about. I know that a D & C would clarify things, and I am just

trying to weigh the pros and cons and make the right decision.

Thanks again. :-)

Heidi

In a message dated 1/9/01 5:07:05 PM, you wrote:

<<Heidi,

I see from your second letter that hysteroscopic resection isn't as option as

you have subserosal fibroids. These could be removed by myomectomy, but that

involves general anaesthesia and a difficult recovery period.

I don't know whether any form of myolysis (see archive messages about MRI

assisted cryosurgery) can be done under local anaesthaesia or - like Uterine

Artery Embolization - with conscious sedation. Perhaps some more

knowledgeable person on the list can comment?

I wasn't reading your letter very carefully when I commented on your

thickened endometrium. You say it was likely to have been caused by hormonal

treatment and has since cleared up. But I still think with all your health

problems that there could be another cause of heavy bleeding apart from your

fibroids. And fibroids on the outside of the womb shouldn't cause much period

problems such as you describe, especially small subserosals. Although you

need to keep a careful eye on the growth of the fibroids, maybe treatment of

the fibroids is not a priority treatment at present and/or maybe killing the

fibroids is not going to improve your menses. (You mentioned polyps; they

would cause menstrual difficulties.)

Reflexology is supposed to be helpful for hormone balance, so if you can

find an experienced reflexologist you might try that therapy alongside your

conventional treatments.

>>

March 4, 2001

I was diagnosed with a second fibroid one year after I had a myomectomy.

I wanted to have a second child.

My fibroid was a submucous cervical fibroid around 7 or 8 cm.

My reproductive Endocrinologist/infertility doctor told me to go ahead and

try to get pregnant.

I did and now have a wonderful 2 year old running around. The only

complication from having a myomectomy before this and having a fibroid in my

uterus during pregnancy was that I had to have a cesearian birth instead of

natural.

I would suggest you adk your Gynecologist to refer you to a Reproductive

Endocrinologist for advice on your fibroid. This may give you another option

before having surgery.

Also where your fibroid is located may be another issue but I would surley

get a scond opinion on having a baby now or after a myomectomy.

another thing after I had my baby my fibroid had shrunk by about 2 cm during

pregnancy and nursing. The nursing decreases your hormone levels naturally

which can control the fibroid growth somewhat untill you stop. But after you

stop nursing it may grow rapidly so you would need to be ready to have some

type of treatment plan afterwards.

I am dealing with that now.

The problem I am having is getting a consult on myomectomy.

My previous reproductive Endocrinologist will not see me due to insurance

issues.

So I have had to find another one. This has created a nightmare since I was

so dependent on what my Reproductive doctor recommended I do.

One other thing I feel because I waited to have children this may of made

things worse since fibroids usually affect women over 30 more and both my

sisters had children younger than me and both have not had problems with

fibroids.

I hope this helps.

Patty

March 4, 2001

I was diagnosed with a second fibroid one year after I had a myomectomy.

I wanted to have a second child.

My fibroid was a submucous cervical fibroid around 7 or 8 cm.

My reproductive Endocrinologist/infertility doctor told me to go ahead and

try to get pregnant.

I did and now have a wonderful 2 year old running around. The only

complication from having a myomectomy before this and having a fibroid in my

uterus during pregnancy was that I had to have a cesearian birth instead of

natural.

I would suggest you adk your Gynecologist to refer you to a Reproductive

Endocrinologist for advice on your fibroid. This may give you another option

before having surgery.

Also where your fibroid is located may be another issue but I would surley

get a scond opinion on having a baby now or after a myomectomy.

another thing after I had my baby my fibroid had shrunk by about 2 cm during

pregnancy and nursing. The nursing decreases your hormone levels naturally

which can control the fibroid growth somewhat untill you stop. But after you

stop nursing it may grow rapidly so you would need to be ready to have some

type of treatment plan afterwards.

I am dealing with that now.

The problem I am having is getting a consult on myomectomy.

My previous reproductive Endocrinologist will not see me due to insurance

issues.

So I have had to find another one. This has created a nightmare since I was

so dependent on what my Reproductive doctor recommended I do.

One other thing I feel because I waited to have children this may of made

things worse since fibroids usually affect women over 30 more and both my

sisters had children younger than me and both have not had problems with

fibroids.

I hope this helps.

Patty

March 4, 2001

But I am worried about the reconstruction of

my uterus and wonder if I'll be able to carry a full

term baby after it. Any info/experience?

Hi , I had miscarriage before my myomectomy and was told I wouldn't be

able to carry a baby to term. Afterward they myo, my fibroids returned and

were a bother but my first daughter was delivered at 38 weeks and my second

at 39 weeks. Doesn't get much more full term than that. :-) Best of luck.

March 4, 2001

But I am worried about the reconstruction of

my uterus and wonder if I'll be able to carry a full

term baby after it. Any info/experience?

Hi , I had miscarriage before my myomectomy and was told I wouldn't be

able to carry a baby to term. Afterward they myo, my fibroids returned and

were a bother but my first daughter was delivered at 38 weeks and my second

at 39 weeks. Doesn't get much more full term than that. :-) Best of luck.

March 4, 2001

<<having a myomectomy before this and having a fibroid in my

uterus during pregnancy was that I had to have a cesearian birth instead of

natural.>>

<<. The nursing decreases your hormone levels naturally which can control the

fibroid growth somewhat untill you stop>>

Hi Patty,

That sounds just like me. My biggest fibroid during pregnancy was located

near the same spot the one I had removed was. So my doc wasn't sure how the

internal incisions would hold up during labor. I also had 3 fibroids big as

her head. So I got a c/sec. The second c/sec we planned from the start.

I got preg with my 2nd daughter (still nursing the first one and on the

mini-pill) so she had a better start, the fibroids were small to begin with.

I can't believe we tried to get preg for 4 years for the first one and the

second one snuck up on us, LOL. Shock was an understatement but so was

completely thrilled.

I just stopped nursing her in Jan. I have had my period for a while but this

month it was back to gushing. So I'm looking for a new doc and some new

options to insist on. I guess the fibroid(s) have grown since I stopped

nursing!

I am so glad I found this group, I am learning so much from you ladies.

Take care, Reba

March 4, 2001