looking for answers

[Guest guest]

Hello My name is and I have a friend who had referred me to this group

a while ago. Her name is Lana. I posted a message and received some replies,

THANK YOU, I am going to post this message again in hopes that maybe I can find

some more answers to my problem. I have had irregular periods for 7 years now

and they steadily get worse. I sometimes have two or more within a months time.

Is this related to EDS? I have some of the other symptoms as well but this is

the most troubling for me to handle. I have been to the Gynocologist and all he

tells me is that I may be going through an early menopause, I somehow don't

beleive him. My emotional rollarcoaster of emotions, etc are horrible to

handle. If this is related to EDS is there a certain type of doctor I need to

be trying to go to? I want to thank you now for taking the time to read my

message and I hope you may be able to help me with some answers. Thank you

again.

[Guest guest]

Hi ,

I can't say for sure, but I do think I heard something somewhere about

endometriosis and EDS. It may have been about endo in the lungs (you can get it

in many different places), which is connected to spontaneous pneumothorax, which

can also be connected to EDS. My oldest daughter had the pneumothorax 3 times.

She also has very irregular (2-3 a month), very heavy and very painful periods.

Recently, she went on depo to get some relief, and it's working great. Don't

know if you want to look into that. The oral birth control pill also help a lot

of people.

My other daughter has very heavy and painful periods too, and she's begging to

go on the depo too, to get some relief.

Periods are such agony for some of us girls. The guys will never fully

understand it. I can't tell you the pain I've suffered from them my whole adult

life! I am so glad I don't have to worry about them anymore since I got an

hysterectomy last May. But mine was due to a prolapsed uterus. It was falling

out!!! OH!

It's really hard to say if it's due to something, or if it's just their lot in

life. But, I do have it listed on my health history for the geneticist next

month. Who knows?

Like someone said earlier - weird things? - blame it on EDS.

I assume that since you've been to the gyn that you've had a recent pap. Have

you been checked for endo, fibroids, and all those other pesky things that can

occur? How old are you (sorry, but that has to be taken into consideration - it

may be the big " M " ) I know of many women who suffered for years with it - the

irregular periods and the roller coaster of emotions. But, you say you somehow

don't believe your dr. I have found that my instincts are usually right.

Some people go on hormones, but a lot of them have bad problems with them (my

mom did).

So, ask for more investigation into the matter. If you just got a pap, and

haven't gotten the results back, maybe it will show something.

If nothing shows up, tell your gyn how miserable you are, and ask if there is

ANYTHING you can do to feel better. I'm sure there are lots of things you can

do, if it's the big " M " .

Good luck

[Guest guest]

Hi ,

The strange thing is I am 32, and the dr. even said I was too young for " M " but

he wasn't ruling it out. He has done several tests and took a sample of the

lining of my uterus and the results came back inconclusive. He couldn't even

tell the me the things that he normally could because of the strange results( in

his words). I also have some of the hypermobility of the joints as well and

that is what made Lana (my friend) think that it could be EDS and she told me

that someone on the list may have the same symptons, etc......

I have been on a lot of the different birth control pills and none of them

seemed to take care of my problem. The only other suggestion from my dr was to

have a hysterectomy ( sorry if my spelling is incorrect) but I don't know on

that issue, he did tell me that it was ultimately my decision. He gave me pain

pills for the cramping and you name it everything else. Nothing is seeming to

work. I do appreciate your reply though and I will be going back for my annual

in a couple of months. I hope maybe then he can give me some answers but my

thought on that is very unlikely.

Once again thank you very much for your reply on this I do appreciate it.

Take care.

Re: looking for answers

Hi ,

I can't say for sure, but I do think I heard something somewhere about

endometriosis and EDS. It may have been about endo in the lungs (you can get it

in many different places), which is connected to spontaneous pneumothorax, which

can also be connected to EDS. My oldest daughter had the pneumothorax 3 times.

She also has very irregular (2-3 a month), very heavy and very painful periods.

Recently, she went on depo to get some relief, and it's working great. Don't

know if you want to look into that. The oral birth control pill also help a lot

of people.

My other daughter has very heavy and painful periods too, and she's begging to

go on the depo too, to get some relief.

Periods are such agony for some of us girls. The guys will never fully

understand it. I can't tell you the pain I've suffered from them my whole adult

life! I am so glad I don't have to worry about them anymore since I got an

hysterectomy last May. But mine was due to a prolapsed uterus. It was falling

out!!! OH!

It's really hard to say if it's due to something, or if it's just their lot in

life. But, I do have it listed on my health history for the geneticist next

month. Who knows?

Like someone said earlier - weird things? - blame it on EDS.

I assume that since you've been to the gyn that you've had a recent pap. Have

you been checked for endo, fibroids, and all those other pesky things that can

occur? How old are you (sorry, but that has to be taken into consideration - it

may be the big " M " ) I know of many women who suffered for years with it - the

irregular periods and the roller coaster of emotions. But, you say you somehow

don't believe your dr. I have found that my instincts are usually right.

Some people go on hormones, but a lot of them have bad problems with them (my

mom did).

So, ask for more investigation into the matter. If you just got a pap, and

haven't gotten the results back, maybe it will show something.

If nothing shows up, tell your gyn how miserable you are, and ask if there is

ANYTHING you can do to feel better. I'm sure there are lots of things you can

do, if it's the big " M " .

Good luck

[Guest guest]

Hi ,

The strange thing is I am 32, and the dr. even said I was too young for " M " but

he wasn't ruling it out. He has done several tests and took a sample of the

lining of my uterus and the results came back inconclusive. He couldn't even

tell the me the things that he normally could because of the strange results( in

his words). I also have some of the hypermobility of the joints as well and

that is what made Lana (my friend) think that it could be EDS and she told me

that someone on the list may have the same symptons, etc......

I have been on a lot of the different birth control pills and none of them

seemed to take care of my problem. The only other suggestion from my dr was to

have a hysterectomy ( sorry if my spelling is incorrect) but I don't know on

that issue, he did tell me that it was ultimately my decision. He gave me pain

pills for the cramping and you name it everything else. Nothing is seeming to

work. I do appreciate your reply though and I will be going back for my annual

in a couple of months. I hope maybe then he can give me some answers but my

thought on that is very unlikely.

Once again thank you very much for your reply on this I do appreciate it.

Take care.

Re: looking for answers

Hi ,

I can't say for sure, but I do think I heard something somewhere about

endometriosis and EDS. It may have been about endo in the lungs (you can get it

in many different places), which is connected to spontaneous pneumothorax, which

can also be connected to EDS. My oldest daughter had the pneumothorax 3 times.

She also has very irregular (2-3 a month), very heavy and very painful periods.

Recently, she went on depo to get some relief, and it's working great. Don't

know if you want to look into that. The oral birth control pill also help a lot

of people.

My other daughter has very heavy and painful periods too, and she's begging to

go on the depo too, to get some relief.

Periods are such agony for some of us girls. The guys will never fully

understand it. I can't tell you the pain I've suffered from them my whole adult

life! I am so glad I don't have to worry about them anymore since I got an

hysterectomy last May. But mine was due to a prolapsed uterus. It was falling

out!!! OH!

It's really hard to say if it's due to something, or if it's just their lot in

life. But, I do have it listed on my health history for the geneticist next

month. Who knows?

Like someone said earlier - weird things? - blame it on EDS.

I assume that since you've been to the gyn that you've had a recent pap. Have

you been checked for endo, fibroids, and all those other pesky things that can

occur? How old are you (sorry, but that has to be taken into consideration - it

may be the big " M " ) I know of many women who suffered for years with it - the

irregular periods and the roller coaster of emotions. But, you say you somehow

don't believe your dr. I have found that my instincts are usually right.

Some people go on hormones, but a lot of them have bad problems with them (my

mom did).

So, ask for more investigation into the matter. If you just got a pap, and

haven't gotten the results back, maybe it will show something.

If nothing shows up, tell your gyn how miserable you are, and ask if there is

ANYTHING you can do to feel better. I'm sure there are lots of things you can

do, if it's the big " M " .

Good luck

[Guest guest]

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

From: michelle bartley

I have had irregular periods for 7 years now and they steadily get worse. I

sometimes have two or more within a months time. Is this related to EDS?

******************************************************

Hi , I'm Cindy C. First welcome to our group. Many folks here have

joined before the DX. Our family carries Type 3 EDS. All the women on my mom's

side have had terrible periods and early uterus removal for execcive bleeding.

For this family of women, we are lucky to have 5 days a month with out the

curse. I finally had my hysterectomy when my spleen stopped working from the

overload. I was in need of blood transfusions. Part of EDS?, I don't know for

sure, but my guess would be yes. Cindy C.

[Guest guest]

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

From: michelle bartley

I have had irregular periods for 7 years now and they steadily get worse. I

sometimes have two or more within a months time. Is this related to EDS?

******************************************************

Hi , I'm Cindy C. First welcome to our group. Many folks here have

joined before the DX. Our family carries Type 3 EDS. All the women on my mom's

side have had terrible periods and early uterus removal for execcive bleeding.

For this family of women, we are lucky to have 5 days a month with out the

curse. I finally had my hysterectomy when my spleen stopped working from the

overload. I was in need of blood transfusions. Part of EDS?, I don't know for

sure, but my guess would be yes. Cindy C.

[Guest guest]

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

From: michelle bartley

I have had irregular periods for 7 years now and they steadily get worse. I

sometimes have two or more within a months time. Is this related to EDS?

******************************************************

Hi , I'm Cindy C. First welcome to our group. Many folks here have

joined before the DX. Our family carries Type 3 EDS. All the women on my mom's

side have had terrible periods and early uterus removal for execcive bleeding.

For this family of women, we are lucky to have 5 days a month with out the

curse. I finally had my hysterectomy when my spleen stopped working from the

overload. I was in need of blood transfusions. Part of EDS?, I don't know for

sure, but my guess would be yes. Cindy C.

[Guest guest]

Hi,

If the tests were inconclusive, I would ask him to do them again.

Have you tried the depo? It actually makes you stop having your period while

you are taking it.

Some people do start menopause young. There may even be a name for it. Or it

just may be called early menopause.

Hope you don't mind me asking, but do you have kids, or are you planning on

having them?

The reason I asked was cause after my 3rd kid, I had my tubes tied. I knew I

didn't want any more, and my dr told me not to have any more after the 2nd,

cause I had a bi-coruate uterus and had to have c-sections. All my kids were

transverse.

I knew then that I had a prolapse. Anyway, I waited till last May to go ahead

with the hysterectomy, and It's the best things I've done.

But, it's a hard decision to make, especially at your age. I even had a hard

time coming to terms with the reality of no more kids, even though I didn't want

more and I'm older.

You should go to this web site - www.hystersisters.com

It's a support group for hysterectomys, and a lot of the women on it are like

you. Having problems, some are facing the decision of getting a hysterectomy,

some are getting one, some have had one.

I can't tell you how much information and support I got from them. That was the

first message board I ever tried, and it is what made me try this one (after

Cindy C. told me about it).

You can go on and tell them what's going on, and you will get so much help,

information and support, you won't beleive it.

I really encourage you to try it. You'll probably get so many responses of

women dealing with the same things you are.

Of course, you probably won't find anyone suffering with EDS, but you will find

help dealing with this particular problem.

I even made a new friend from the group, who lives just a mile away from me.

And I e-mail back and forth with another. I haven't been to the site in a few

months, but I just may go back and check in with them all.

[Guest guest]

Hi,

If the tests were inconclusive, I would ask him to do them again.

Have you tried the depo? It actually makes you stop having your period while

you are taking it.

Some people do start menopause young. There may even be a name for it. Or it

just may be called early menopause.

Hope you don't mind me asking, but do you have kids, or are you planning on

having them?

The reason I asked was cause after my 3rd kid, I had my tubes tied. I knew I

didn't want any more, and my dr told me not to have any more after the 2nd,

cause I had a bi-coruate uterus and had to have c-sections. All my kids were

transverse.

I knew then that I had a prolapse. Anyway, I waited till last May to go ahead

with the hysterectomy, and It's the best things I've done.

But, it's a hard decision to make, especially at your age. I even had a hard

time coming to terms with the reality of no more kids, even though I didn't want

more and I'm older.

You should go to this web site - www.hystersisters.com

It's a support group for hysterectomys, and a lot of the women on it are like

you. Having problems, some are facing the decision of getting a hysterectomy,

some are getting one, some have had one.

I can't tell you how much information and support I got from them. That was the

first message board I ever tried, and it is what made me try this one (after

Cindy C. told me about it).

You can go on and tell them what's going on, and you will get so much help,

information and support, you won't beleive it.

I really encourage you to try it. You'll probably get so many responses of

women dealing with the same things you are.

Of course, you probably won't find anyone suffering with EDS, but you will find

help dealing with this particular problem.

I even made a new friend from the group, who lives just a mile away from me.

And I e-mail back and forth with another. I haven't been to the site in a few

months, but I just may go back and check in with them all.

[Guest guest]

Hi,

If the tests were inconclusive, I would ask him to do them again.

Have you tried the depo? It actually makes you stop having your period while

you are taking it.

Some people do start menopause young. There may even be a name for it. Or it

just may be called early menopause.

Hope you don't mind me asking, but do you have kids, or are you planning on

having them?

The reason I asked was cause after my 3rd kid, I had my tubes tied. I knew I

didn't want any more, and my dr told me not to have any more after the 2nd,

cause I had a bi-coruate uterus and had to have c-sections. All my kids were

transverse.

I knew then that I had a prolapse. Anyway, I waited till last May to go ahead

with the hysterectomy, and It's the best things I've done.

But, it's a hard decision to make, especially at your age. I even had a hard

time coming to terms with the reality of no more kids, even though I didn't want

more and I'm older.

You should go to this web site - www.hystersisters.com

It's a support group for hysterectomys, and a lot of the women on it are like

you. Having problems, some are facing the decision of getting a hysterectomy,

some are getting one, some have had one.

I can't tell you how much information and support I got from them. That was the

first message board I ever tried, and it is what made me try this one (after

Cindy C. told me about it).

You can go on and tell them what's going on, and you will get so much help,

information and support, you won't beleive it.

I really encourage you to try it. You'll probably get so many responses of

women dealing with the same things you are.

Of course, you probably won't find anyone suffering with EDS, but you will find

help dealing with this particular problem.

I even made a new friend from the group, who lives just a mile away from me.

And I e-mail back and forth with another. I haven't been to the site in a few

months, but I just may go back and check in with them all.