Re: New to the group

[Guest guest]

hello felicia,

my name is Bridgette and two weeks ago I was diagnosed with a large fibroid.

I am 36 years old and would like to have a baby. In fact this year I was

planning to get pregnant, I am not in a relationship at the moment, but I

wanted to have a child. My gyno suggested to keep the fibroid in because of

my plans for a baby, however my reproductive endocrinologist suggest

surgery -- a myo.

I do not have any symptoms, no heavy bleeding, no painful periods, just - as

you - a pouch, I am 5'7 " and 135 pounds. So similar to you I do not know

what to do...

Maybe we can help each other.

Bridgette

Re: new to the group

> Hello group. My name is Felicia. I've diagnosed with two fibroids. One

> being 10 cm in size. I am 32 with no kids. I'm not married or in a

serious

> relationship. My gyn and infertility doctors suggest a myo. The plan is

to

> take Lupron shots for 3-4 months before surgery. I'm not having the heavy

> periods or painful cramps. I do have muscle spams from time to time. My

> periods lately have been the same. One month I had bad cramps where

Alleve

> didn't help me out for 2 days. My stomach looks like a pouch. Not mind

you

> I'm 170 lbs on a 5ft5in frame..so I could stand to lose 20 lbs. I am on

the

> pill. So I don't know if this one reason why I'm not having severe

symptoms.

>

> I'm not to keen on having this surgery but my doctors say it can

> help me in the long run. I'm very nervous about having this surgery. Is

> there anyone out there that has a large fibroid but no having any

symptoms?

> I don't want to wait until I'm having severe problems to do something and

> ruin my chances for having kids later.

>

>

>

>

>

[Guest guest]

Bridgette,

My situation was similar to yours (large fibroids, no symptoms) when I was

28 and newly married. We didn't want children yet and the reproductive

endocrinologist I consulted said that a myo was more likely to produce a

good outcome (i.e. maintain fertility) if I had it right before I was ready

to conceive. A couple of years later I had an abdominal myo during which 6

fibroids were removed ranging from small to grapefruit-sized. I was

pregnant four months later and delivered a healthy 8 lb. baby by c-section

13 months after the myo. A few years later we decided to have another child

but the fibroids were huge again. I finally got pregnant after trying for a

year but miscarried at 14 weeks. I had another myo a few months later and,

once again, delivered 13 months after the myo.

You could be one of the lucky ones whose fibroids don't return after having

them removed, but in my case, the doc's advice was good--have the myo

shortly before you're ready to get pregnant so you don't give them time to

grow back and interfere with the pregnancy.

I live in the Chicago-area too and thought the reproductive endocrinologist

I used was terrific, but unfortunately she moved to California so I don't

have any advice for you on docs. Based on your e-mail address, you work at

U of C--there must be someone good there. Good luck.

Ann S.

Re: new to the group

>

>

> > Hello group. My name is Felicia. I've diagnosed with two fibroids.

One

> > being 10 cm in size. I am 32 with no kids. I'm not married or in a

> serious

> > relationship. My gyn and infertility doctors suggest a myo. The plan

is

> to

> > take Lupron shots for 3-4 months before surgery. I'm not having the

heavy

> > periods or painful cramps. I do have muscle spams from time to time.

My

> > periods lately have been the same. One month I had bad cramps where

> Alleve

> > didn't help me out for 2 days. My stomach looks like a pouch. Not mind

> you

> > I'm 170 lbs on a 5ft5in frame..so I could stand to lose 20 lbs. I am on

> the

> > pill. So I don't know if this one reason why I'm not having severe

> symptoms.

> >

> > I'm not to keen on having this surgery but my doctors say it

can

> > help me in the long run. I'm very nervous about having this surgery.

Is

> > there anyone out there that has a large fibroid but no having any

> symptoms?

> > I don't want to wait until I'm having severe problems to do something

and

> > ruin my chances for having kids later.

> >

> >

> >

> >

> >

[Guest guest]

Ann,

Your story is very uplifting, it is giving me some hope. My Endocrinologists

is here at the U of C his name is Cohen. He seems very hopeful in

removing the tumor but more so, maintaining my uterus so I can later have

children, or at least one. I meet with him this Wednesday to go over the

test results and my options. I will let you and everyone in the group know

the outcome. Thank you all so very much.

Bridgette

[Guest guest]

Hi ,

I had a myo done in October by Dr. Wilf Steinberg out of St. Mike's (he's in the

book; his office is on Queen

St. East). He is a gynecologist but not an obstetrician. My gp referred me to

him after I told her that I wanted

to see someone who specializes in fibroids. He told me prior to surgery that he

has never had a myo turn into a

hysterectomy. he was also very aware that I wanted to have kids ASAP. I did get

pregnant 3 months after surgery

but miscarried - my gp thinks this is not likely due to the surgery. Dr.

Steinberg did tell me that it could

take longer to conceive, and said that I will need to have a C-section when I

do, but that a pregnancy would not

be considered high risk. He also told me that I could come back to see him if I

haven't conceived in 6 - 12

months. My main fibroids were submucosal, about 2 & 3 cm, plus a few tiny

intermural ones.

I am on a fertility group also and a woman there just had an appointment with a

clinic at Women's College - I'm

not sure whether it specializes in fibroids or in mixing traditional with

alternative treatments - she was quite

pleased with her appointment although it took some time for her to get in.

>

>

> I am also interested in getting a second opinion. Does anyone know of a

doctor who specializes

> in uterine fibroids in the Toronto area?

>

> Any info you may have would be greatly appreciated.

>

>

>

>

[Guest guest]

Hi ,

I had my myo done by Dr. Sved and he is located at the Minto Plaza on

Bay St. He has a very high successful rate with myos. If you want

anymore information feel free to email me personnally.

> Hello,

>

> I am new to the group and have many questions. I am 35 years old

and have known

> about my fibroids for just over a year. I have a 16 week enlarged

fibroid uterus.

> The ultrasound technologist described my multiple fibroids as being

similar to

> 'raisin bread' , with the largest being 10.9cm in length (I wasn't

given the other dimensions).

>

> I have no side effects other than often having a full bladder and a

larger than average stomach.

> I would however like to have children in the near future. My

doctor has advised that I have a mycomectomy.

> I am however concerned about the possible infertility (scarring,

hysterectomy) associated with the operation.

>

> My doctor has also said that it may be difficult to conceive

without the operation. If I were to become

> pregnant, the fibroids would likely become very painful and the

baby may be premature.

> She also mentioned that a C-section was very likely.

>

> Has anyone had a pregnancy with fibroids who could share their

experience with me?

>

> I am also interested in getting a second opinion. Does anyone know

of a doctor who specializes

> in uterine fibroids in the Toronto area?

>

> Any info you may have would be greatly appreciated.

>

>

>

>

>

>

[Guest guest]

,

I would like to share with you my story as I am in a similar situation. And have

had less than satisfactory results with surgery. I am 31 years old, and

married now less than a year with hopes for a family. In Feb. 2000 I discovered

I had a 3 cm fibroid. My ob/gyn advised me to " watch & wait " for the last two

years as I went in for annual check-ups. During my last visit, my doctor was

stunned to see that my fibroid had grown to 10 cm (grapefruit sized like yours).

As this was considered rapid growth, my doctor was concerned that I might have a

sarcoma (cancerous growth) and advised me to have surgery (myomectomy)

immediately for two reasons: 1st to obtain a biopsy to ensure it was benign, 2nd

to remove the fibroid.

I followed my doctor's instruction and went in for surgery this year April 15th.

To my shock & dismay, I awoke from my surgery to find out that they did not

remove my fibroid during surgery or biopsy that particular fibroid. My

pathology report states that my doctor and the specialist called in whilst I was

on the operating table could not identify the uterus as it was so enlarged and

distorted in form and therefore did not know where to begin myomectomy. My

uterus was described as very globular, with multiple fibroids or dips &

crevices between fibroids - with fibroids appearing intramural and joined. Maybe

something like your " raisinbread " . They were able to remove a smaller

pedunculated (stalk) fibroid and biopsy it, but he very large fibroid among

other intramurals remain untouched and are still growing inside me. I was told

that to remove these intramural fibroids within the uterine muscle tissue, they

would have to blindly cut me into " mincedmeat " as my doctor so bluntly stated

it, since they could not identify the exact location of the fibroids. This

mincedmeat meaning the scarring of my uterine walls which would affect my

fertility.

The operation disabled me for several weeks. My incision was much like that of a

C-section approx. 5-6 inches laterally below the bikini line. Simple things like

urinating, coughing or spitting (while brushing teeth) became excruciating. You

can imagine my anger at having to endure all this, take time off from work , pay

surgery fees with less than satisfactory results.

The moral of my story is this. PLease get a second a opinion before going

under the knife. This is something I regret not doing. My doctor did not send

me for an MRI, only sonograms. Maybe with an MRI she would have seen that these

fibroids were intramural and could not be removed by myomectomy. I have since

then found a new doctor. I have an appt. August 6th with a specialist who is

supposed to identify each fibroid and its exact location to determine if it is

safe for me and potential baby to get pregnant and carry a full term pregnancy.

I will try to stay in contact to advise on results. In the mean time, proceed

with caution & good luck.

PS. I am from buffalo, NY

New to the group

Hello,

I am new to the group and have many questions. I am 35 years old and have known

about my fibroids for just over a year. I have a 16 week enlarged fibroid

uterus.

The ultrasound technologist described my multiple fibroids as being similar to

'raisin bread' , with the largest being 10.9cm in length (I wasn't given the

other dimensions).

I have no side effects other than often having a full bladder and a larger than

average stomach.

I would however like to have children in the near future. My doctor has advised

that I have a mycomectomy.

I am however concerned about the possible infertility (scarring, hysterectomy)

associated with the operation.

My doctor has also said that it may be difficult to conceive without the

operation. If I were to become

pregnant, the fibroids would likely become very painful and the baby may be

premature.

She also mentioned that a C-section was very likely.

Has anyone had a pregnancy with fibroids who could share their experience with

me?

I am also interested in getting a second opinion. Does anyone know of a doctor

who specializes

in uterine fibroids in the Toronto area?

Any info you may have would be greatly appreciated.

[Guest guest]

Hi Tim,

My name is Chrystine, and I am 21 years old and from New Jersey... I have had rsd for 5 years now... It is in both feet, both hands, and my abdomen... I got rsd from a cortisone injection....

Chrystine

[Guest guest]

Hi Chrystine

It's so nice to hear from you. What part of Jersey? I am in South

Jersey we moved here from county 2 years ago. After thinking

back I realized that this must have started when I was around 8 years

old and finally caught up with me in 98 when I had a bad bout with H-

Pylori. My RSD started in my left breast and back and over the last

13 months progressed into Full chest/ ribcage, abdomen,both feet and

hands, neck, legs and now it is working on my face. Sometimes it

feels like I am being possessed or slowly getting eaten alive. I hope

the doctors can at least help me to stop it from getting worse but as

for the spreading I don't think there is too much more of me to

spread it to. The worse part is in looking as healthy as an ox but

feeling like your on a bed of nails or roasting on an open fire or

left out in the bitter cold. The pain meds help to tolerate much of

it but when all of the symptoms attack at the same time there seems

to be no power on earth to help and I have to hide from friends so

they don't look at me with pity and helplessness. I feel so sorry for

them. I know how much love they have for me and I know that feeling

of helplessness so well and would not wish it on anyone. Anyway I am

just rambling again. It's another one of those nights with no sleep.

Everytime I lay down I sleep for 10 min and wake up from pain or

noises you know the score. I am glad to here from you and all that

have introduced themselves. This is the first group that I have

belonged to in awhile that really has some nice people. Eventually I

will get my story done and post it but for now it's just drips and

drabes like scraps of memories. I'll pull it together soon. I see my

doctor on Friday and then she will let me know where we stand and

what the numerologist has suggested. He wants me to go back to him in

Nov. for an EMG on my hands and arms. He did not like what I was

telling him when he did the needle test. I thought he was poking me

with a needle or a sharp object and my friend that went with me told

me he was using a tweezer and a pencil. He said the doctor was

surprised that I felt the tweezer as one point and not two. Anyway

hope you are feeling OK. I only wish that someone as young as you did

not have this as it is a very scary thing to go thru even when you

have people around it scary. I am also finding it hard to reply to

people at times in emails and in the groups as it feels overwhelming

I have to keep telling myself it is not. I hope to hear from you and

others and be there for others if they need me or any advice.

Sincerely

Tim

> Hi Tim,

>

> My name is Chrystine, and I am 21 years old and from New Jersey...

I have had

> rsd for 5 years now... It is in both feet, both hands, and my

abdomen... I

> got rsd from a cortisone injection....

>

> Chrystine

[Guest guest]

Hello Tim,

Well, another NJ person! I'm also from NJ, the Northwestern part, near PA

at the Delaware Water Gap. Not far from County, which we call the

" real world " compared to here in Warren County.

Chrystine is down near AC. She has also started a NJ based online support

group, I'm sure you'll get an invite to that as well.

There are many good Drs. in the Philadelphia area, are you able to see one

of those with the Medicaid? My Dr. here keeps telling me I should go to a

pain clinic in Philly, but it's about 90 miles from me. I'll have to ask

him which Dr.

If there aren't any in NJ, and they admit that, maybe they will be open to

PA, especially since it's close.

Hugs,

Jo

Re: New to the group

> Hi Chrystine

> It's so nice to hear from you. What part of Jersey? I am in South

> Jersey we moved here from county 2 years ago. After thinking

> back I realized that this must have started when I was around 8 years

> old and finally caught up with me in 98 when I had a bad bout with H-

> Pylori. My RSD started in my left breast and back and over the last

> 13 months progressed into Full chest/ ribcage, abdomen,both feet and

> hands, neck, legs and now it is working on my face. Sometimes it

> feels like I am being possessed or slowly getting eaten alive. I hope

> the doctors can at least help me to stop it from getting worse but as

> for the spreading I don't think there is too much more of me to

> spread it to. The worse part is in looking as healthy as an ox but

> feeling like your on a bed of nails or roasting on an open fire or

> left out in the bitter cold. The pain meds help to tolerate much of

> it but when all of the symptoms attack at the same time there seems

> to be no power on earth to help and I have to hide from friends so

> they don't look at me with pity and helplessness. I feel so sorry for

> them. I know how much love they have for me and I know that feeling

> of helplessness so well and would not wish it on anyone. Anyway I am

> just rambling again. It's another one of those nights with no sleep.

> Everytime I lay down I sleep for 10 min and wake up from pain or

> noises you know the score. I am glad to here from you and all that

> have introduced themselves. This is the first group that I have

> belonged to in awhile that really has some nice people. Eventually I

> will get my story done and post it but for now it's just drips and

> drabes like scraps of memories. I'll pull it together soon. I see my

> doctor on Friday and then she will let me know where we stand and

> what the numerologist has suggested. He wants me to go back to him in

> Nov. for an EMG on my hands and arms. He did not like what I was

> telling him when he did the needle test. I thought he was poking me

> with a needle or a sharp object and my friend that went with me told

> me he was using a tweezer and a pencil. He said the doctor was

> surprised that I felt the tweezer as one point and not two. Anyway

> hope you are feeling OK. I only wish that someone as young as you did

> not have this as it is a very scary thing to go thru even when you

> have people around it scary. I am also finding it hard to reply to

> people at times in emails and in the groups as it feels overwhelming

> I have to keep telling myself it is not. I hope to hear from you and

> others and be there for others if they need me or any advice.

> Sincerely

> Tim

>

>

>

>

>

>

> > Hi Tim,

> >

> > My name is Chrystine, and I am 21 years old and from New Jersey...

> I have had

> > rsd for 5 years now... It is in both feet, both hands, and my

> abdomen... I

> > got rsd from a cortisone injection....

> >

> > Chrystine

>

>

>

>

[Guest guest]

Yeah Beckie, your one of the first I can remember that is on the Duragesic Patch!!! I take it also and it not only helps with the pain but my mind is much clearer than on Oxycontin. How much do you take Beckie? Do you change every 3rd day? Just interested if that is okay. Would like to know do you also have Fibro as I do and that is awful. Take care

s Momma

JoAnn

Re: New to the group

Hi Tim,

My name is Beckie and I have full body Rsd and some internal.I have been battling Rsd for 3 years and 4 months now.I also have Dystonia and equinovarus deformity in my left foot secondary to the Rsd.And last month I was diagnosed with Fibro as well.

I am on the duragesic patch for pain.And I can honestly say that this is the one medicine that was able to bring my pain under control.

I look forward to getting to know you better.

Hugs,Beckie