Re: gyn problems and questions - Hormone Replacement

[Guest guest]

I am wondering about the merits of estrogen replacement therapy for me,

having had a hysterectomy 10 years ago. I remember seeing Dr. Cohen

say (wish I could remember where) that he recommended HRT for anyone

with a mito condtion after menapause. I was on it for a while, and

then stopped when i had a breast cancer scare (turned out to be

negative, big surprise to the docs). They said I could go back on it

with the same risk as any other person, but I have postponed the

decision to do that.

Any thoughts for mito patients and hormone replacement therapy?

Thanks

Happy Spring

Sunny

> Debra,

>         I had problems with clotting.  Mine sounds a lot like yours. 

> At

> first they thought of a tubal ligation, than a thermal ablation, then

> the

> doctors finally decided that I needed a hysterectomy .All these

> thoughts

> and final decision were made within 8 weeks, so the doctors were

> really

> thinking. The clotting had been going on since I was 19 and my periods

> were very irregular, so in July of 2002, at age 25, I had my

> hysterectomy.   It doesn't sound as if a hysterectomy is going to

> work in

> your case, as it didn't in the past.  I think thermal ablations, the

> burning off of the uterus lining can be done under local anesthetic,

> so

> you wouldn't be put totally under.  I don't know if that would help or

> not.  I'm sorry I can't help you more.

>

> Smiles and hugs,

> a

>

> On Sat, 17 Apr 2004 16:39:32 -0600 " Debra Beckmann "

> beckmann@...>

> writes:

> Several times I have posted that Dr Alice thinks I am positive for

> mito

> just not diagnosed...this group is full of people more aware of their

> bodies and medical changes than most doctors and I would like some

> guidance and feedback.

>

> I am 49 and diagnosed with Lupus maybe, been on prednisone since 1997

> and

> having gynecology issues since 1998. For severe bleeding used IM

> Depo-Provera MONTHLY for six months and when it stopped working I was

> scheduled for an emergency hysterectomy(Nov '99). I could not be

> intubated and woke up five hours and three units of blood later with

> only

> a D&C. In 2000 we again started the monthly Provera and when it quit

> again, I got IM Depot Lupron for a year stopping that in July of 2001.

> November of 2003 and two years with no cycles my lab work showed the

> ovaries to be shut

> down. February those ovaries woke up and I have been bleeding since

> March

> 24th. This is showing all the signs of like before when I collected a

> pint fruit jar of clots more closely resembling calf's liver, in a

> weekend. I hate to gross everyone out but I am sure many have

> experienced

> this as well.

>

> Does anyone have experience with bleeding and options to control it?

>

> Thanks,

> Debra

>

>

[Guest guest]

Sunny

I also remember Dr. Cohen writing about it somewhere. Even before that I

asked him about it. He said that unless there was some reason not to take

it, that he felt it should be taken. I have been on it for about 20 years.

The idea behind taking it is that the aging process is due to damage to the

mitochondria and since we are already low in this department, that the

estrogen will help to slow down that normal process of aging.

laurie

> From: z39z@...

> Reply-To:

> Date: Sat, 17 Apr 2004 23:16:37 -0400

> To:

> Subject: Re: gyn problems and questions - Hormone Replacement

>

> I am wondering about the merits of estrogen replacement therapy for me,

> having had a hysterectomy 10 years ago. I remember seeing Dr. Cohen

> say (wish I could remember where) that he recommended HRT for anyone

> with a mito condtion after menapause. I was on it for a while, and

> then stopped when i had a breast cancer scare (turned out to be

> negative, big surprise to the docs). They said I could go back on it

> with the same risk as any other person, but I have postponed the

> decision to do that.

>

> Any thoughts for mito patients and hormone replacement therapy?

>

> Thanks

>

> Happy Spring

>

> Sunny

>

>

>

>

>

>> Debra,

>>         I had problems with clotting.  Mine sounds a lot like yours. 

>> At

>> first they thought of a tubal ligation, than a thermal ablation, then

>> the

>> doctors finally decided that I needed a hysterectomy .All these

>> thoughts

>> and final decision were made within 8 weeks, so the doctors were

>> really

>> thinking. The clotting had been going on since I was 19 and my periods

>> were very irregular, so in July of 2002, at age 25, I had my

>> hysterectomy.   It doesn't sound as if a hysterectomy is going to

>> work in

>> your case, as it didn't in the past.  I think thermal ablations, the

>> burning off of the uterus lining can be done under local anesthetic,

>> so

>> you wouldn't be put totally under.  I don't know if that would help or

>> not.  I'm sorry I can't help you more.

>>

>> Smiles and hugs,

>> a

>>

>> On Sat, 17 Apr 2004 16:39:32 -0600 " Debra Beckmann "

>> beckmann@...>

>> writes:

>> Several times I have posted that Dr Alice thinks I am positive for

>> mito

>> just not diagnosed...this group is full of people more aware of their

>> bodies and medical changes than most doctors and I would like some

>> guidance and feedback.

>>

>> I am 49 and diagnosed with Lupus maybe, been on prednisone since 1997

>> and

>> having gynecology issues since 1998. For severe bleeding used IM

>> Depo-Provera MONTHLY for six months and when it stopped working I was

>> scheduled for an emergency hysterectomy(Nov '99). I could not be

>> intubated and woke up five hours and three units of blood later with

>> only

>> a D&C. In 2000 we again started the monthly Provera and when it quit

>> again, I got IM Depot Lupron for a year stopping that in July of 2001.

>> November of 2003 and two years with no cycles my lab work showed the

>> ovaries to be shut

>> down. February those ovaries woke up and I have been bleeding since

>> March

>> 24th. This is showing all the signs of like before when I collected a

>> pint fruit jar of clots more closely resembling calf's liver, in a

>> weekend. I hate to gross everyone out but I am sure many have

>> experienced

>> this as well.

>>

>> Does anyone have experience with bleeding and options to control it?

>>

>> Thanks,

>> Debra

>>

>>

[Guest guest]

Under: MEDICATIONS CONTRAINDICATED IN MITOCHONDRIAL DIESASE

Hormonal Birth Control

Any ideas on why this would be listed and it would be OK to take

HRT? I had thought it was the estrogen that was thought to be bad

for mito (but I don't know).

Maggie

[Guest guest]

Maggie,

I can share my own experience and a little of that of my two daughters. We have

difficulies with any of the progestrine meds as every time we have taken it, we

develop severe side effects. I was put on birth control 39 years ago and

developed clots and very severe migraines. They immediately took me off. My

daughters have problems with migraines. They can tell you more than I can about

their own difficulties with it but when it came time for me to go on estrogen, I

opted out not only because of the threat of breast cancer which is in my family

but my past history with a like drug.

You are also correct that Hormonal Birth Control is listed in the med list that

Dr Cohen and Dr Shoffner consider contrary for Mito patients. It's interesting

that some individuals with the disease are able to take these without problems

but I do know that my family has to avoid them. This is just a reminder that

what each of us does has to be under strict medical supervision.

Alice

[Guest guest]

I did not know there was a list of contraindicated meds for mito.

i am still newly diagnoses and wonder where can I get this list?

thanks susan

> Under: MEDICATIONS CONTRAINDICATED IN MITOCHONDRIAL DIESASE

>

> Hormonal Birth Control

>

> Any ideas on why this would be listed and it would be OK to take

> HRT? I had thought it was the estrogen that was thought to be bad

> for mito (but I don't know).

>

> Maggie