Polycystic Ovary Syndrome (PCOS)

[ememdee19]

Anybody else out there have this or know somebody that does? My doc just diagnosed me w/ it and based on the limited amount of research I've done thus far, it looks like my chances of infertility and/or diabetes is pretty high (amongst other things).

Anyhow, would just like to hear from others who have experienced PCOS and what their doc did for treatment, etc. TIA.

 

[watercolor]

Hey em...

Sorry hon! But let me assure you. It doesn't cause infertility so much as they report. There are so many things they can do. clomid does wonders for one. ALSO- I know 2 people who have PCOS and concieved.

1st person- has 3 kids, 1 single and a set of twins
2nd person- has 2 kids.

They are testing me for PCOS soon.

Let me get some links... and I will get back to you ASAP

 

[ememdee19]

Originally posted by watercolor
Hey em...

Sorry hon! But let me assure you. It doesn't cause infertility so much as they report. There are so many things they can do. clomid does wonders for one. ALSO- I know 2 people who have PCOS and concieved.

1st person- has 3 kids, 1 single and a set of twins
2nd person- has 2 kids.

They are testing me for PCOS soon.

Let me get some links... and I will get back to you ASAP

Thanks for the info! This really blows.

I already have a bebe, but I'm just wondering what my chances of infertility are as I get older??

What kind of tests are they giving you?

 

[watercolor]

Hey em..

here are some links to this site I have found. Its a board, and many people on there including me, talk about this alot, not to mention other things you can try to lessen the cysts(if there is any at the present time)

I am posting the links to the direct threads along with the link to the board.


PCOS thread


Short but sweet

Pregnancy Lounge Website

Of course, with PCOS it can cause you to have anovulatory cycles, which in turn causes you to have issues with trying to concieve. But this doesn't mean they cant do anything to help.

Make sure to take your vitamins. I can also give you a list of what they call "the baby blend" which is suppose to help with getting your body ready to carry.

You can search that site, just like you do somd. There are alot of area's on there. And everyone is VERY friendly, and helpful. You would never think you saw so many people who feel the exact same way you do.. until you are like "I am scared", "Why in the hell is this happening", "What is wrong", "how can I go about this", etc. SO.. I hope this helps.. and I will check back often.

 

[ememdee19]

Originally posted by kwillia
Penn State's Women's Health PCOS link

4women.gov PCOS link

both look resourceful as well.... I'm sure you can do a search just as easy and will find many more...good luck...

Thanks, kwill!

 

[ememdee19]

Originally posted by watercolor
Hey em..

here are some links to this site I have found. Its a board, and many people on there including me, talk about this alot, not to mention other things you can try to lessen the cysts(if there is any at the present time)

I am posting the links to the direct threads along with the link to the board.


PCOS thread


Short but sweet

Pregnancy Lounge Website

Of course, with PCOS it can cause you to have anovulatory cycles, which in turn causes you to have issues with trying to concieve. But this doesn't mean they cant do anything to help.

Make sure to take your vitamins. I can also give you a list of what they call "the baby blend" which is suppose to help with getting your body ready to carry.

You can search that site, just like you do somd. There are alot of area's on there. And everyone is VERY friendly, and helpful. You would never think you saw so many people who feel the exact same way you do.. until you are like "I am scared", "Why in the hell is this happening", "What is wrong", "how can I go about this", etc. SO.. I hope this helps.. and I will check back often.

Thanks, WC. I'll def. take a look at these sites!

 

[JabbaJawz]

There are several people on the preggo board that I frequent that have PCOS. I don't know much about it, but they all swear they conceived on low-carb diets each time. It definitely doesn't cause infertility and can be managed.

 

[Dymphna]

My old boss had that. She had surgery once to have the cysts removed and they told her that it would have no affect on her fertility. 5-6 years later, she had more cysts and they wanted to do more surgery, this time to remove part of one ovary. She was experiencing occasional severe pain, which they attributed to the cysts bursting. Naturally, that surgery would affect fertility, just because there would be fewer eggs, but it wouldn't make conceiving impossible. My boss refused surgery because she eventually wanted more children (she had one) and decided she could live with the pain. She left the company shortly after that, so I don't know if she ever changed her mind or if she ever had children. :shrug:

 

[watercolor]

Originally posted by ememdee19
Thanks, WC. I'll def. take a look at these sites!

No prob em! They are all the same site...just different things.


If ya need anything, let me know.

Basically, they are going to start running blood work, and some biopsy's and such..

See, as you well know...your body all works together. The pituitary and the thyroid, and hormone levels and such work together. Excesive hormones can cause the cyst's to go arry(sp) but they can help things with that when you do get pregnant.

But that is why PCOS plays a part in the hard times of getting pregnant, because with lack of progesterone which plays a huge part in getting and staying pregnant. Well, the thyroid and the pituitary work right along side of this, and your pituitary will play along with the ovaries sending their signals saying "hey, Im ready to release"...but with the cyst's it kinda either delays that and or makes you have anovulatory cycle.

So, see what I am saying?

They put me on provera because I was having anovulatory cycles, and such. I then when on BCP, which they came fine every month. They said, that once I came off the BCP that I would be fine, and my cycles would go back to normal. well they didn't. I got one just fine, and then they once again disappeared....which is now making them want to test me for this. I had to do the provera again, and it came with the help of that....but I would rather NOT take the provera.. because of the nasty side effects from taking it for a long time. Which in turn now, will lead them to clomid, which has had much success with people concieving.


They can do all sorts of things, IUI, HSG, Clomid, etc

So dont fret to much hun....there is alot they can do to help you...when the time comes

 

[ememdee19]

Thanks for all of the advice and info, everybody. I'll be doing quite a bit of research in the coming days...

 

[alex]

I have it and I was never able to have children. We adopted.

First, got to a good endocrinologist. They should do a complete blood, etc. workup. They can tell you if you are insulin resistant which can lead to diabetes but not always. You may also have weight problems that infertility treatments can make worse (been there). Also some cases of PCOS are not as severe as others. Some symptoms are thinning hair at an early age, skin tags, excessive body hair and very irregular periods. It can also cause a host of other health problems.

If you are trying to have children find a good OB/GYN who knows about this problem. Don’t just let them pump you with clomid. I started with a simple amount of clomid that grew and grew until the pharmacist actually called the doctor about my last prescription because they had never seen it prescribed that high. After 2 years of all types of tests I was finally referred to Johns Hopkins for infertility help. They actually have one of the best reps in the area. They offered two choices of treatment – drugs or surgery. We went with the drugs and let me tell you that was another nightmare. The constant hormone changes were a nightmare of severe mood swings and weight gain plus cost if your insurance doesn’t cover them combined with almost daily blood work and internal sonograms. Then they tried artificial insemination and one month they told us we had 7 very viable eggs and we had to be careful of a large multiple birth. When they started talking various forms of invitro we decided to adopt. Invitro still has a poor success rate. The number of women who carry the baby to full term are small compared to the number of procedures performed.

The links provided above are good starting points and I wish you a lot of luck.

edited to add: I still can go months w/o a period which I think is great. If I go more than 10 months w/o one my dr recommends an biopsy of my uterine lining to check for cancer otherwise I just enjoy the freedom from the monthly curse.

 

[hardlyworkin]

I also have PCOS. I have taken clomid, and provera many different things. But I have now decided to take the pill to regualte myself. My doc told me that once me and my fiance decide we are ready to try again than to just skip pills. There was a bunch of different tests i had done. i had an hsg done, bloodwork, etc. But it is better to know you have it then not to know. It is also something that you can control. My doc has told me it will be difficult to conceive but it will happen. So em.....if you need someone to talk to about it just let me know.

 

[ememdee19]

Originally posted by alex
I have it and I was never able to have children. We adopted.

First, got to a good endocrinologist. They should do a complete blood, etc. workup. They can tell you if you are insulin resistant which can lead to diabetes but not always. You may also have weight problems that infertility treatments can make worse (been there). Also some cases of PCOS are not as severe as others. Some symptoms are thinning hair at an early age, skin tags, excessive body hair and very irregular periods. It can also cause a host of other health problems.

If you are trying to have children find a good OB/GYN who knows about this problem. Don’t just let them pump you with clomid. I started with a simple amount of clomid that grew and grew until the pharmacist actually called the doctor about my last prescription because they had never seen it prescribed that high. After 2 years of all types of tests I was finally referred to Johns Hopkins for infertility help. They actually have one of the best reps in the area. They offered two choices of treatment – drugs or surgery. We went with the drugs and let me tell you that was another nightmare. The constant hormone changes were a nightmare of severe mood swings and weight gain plus cost if your insurance doesn’t cover them combined with almost daily blood work and internal sonograms. Then they tried artificial insemination and one month they told us we had 7 very viable eggs and we had to be careful of a large multiple birth. When they started talking various forms of invitro we decided to adopt. Invitro still has a poor success rate. The number of women who carry the baby to full term are small compared to the number of procedures performed.

The links provided above are good starting points and I wish you a lot of luck.

edited to add: I still can go months w/o a period which I think is great. If I go more than 10 months w/o one my dr recommends an biopsy of my uterine lining to check for cancer otherwise I just enjoy the freedom from the monthly curse.

Thanks for the info, alex. It is much appreciated.

As far as going to see good specialists...it will most likely be a snowball's chance in hell. I'm a military dependent and I'm going through a battle w/ Tricare at this very moment in regards to obtaining an approval to see a specialist. My family practice doc is doing her best to help me out, but her hands are tied when it comes to our insurance.

As far as I know, my symptoms aren't as bad as some have described. I obviously haven't been fully tested, but it still worries me. I have a couple of questions, though...

What is Clomid? Is that the same as Glucophage? My doc has put me on a BC to regulate the hormones, etc. The odd thing is that she wants the cycles to stop for 3 months to see if that helps any. Seems strange to me - who knows? I'm hoping a GYN can provide me w/ more insight, but most likely I won't get much from the providers on base. We'll see. Thanks again!

 

[ememdee19]

Originally posted by hardlyworkin
I also have PCOS. I have taken clomid, and provera many different things. But I have now decided to take the pill to regualte myself. My doc told me that once me and my fiance decide we are ready to try again than to just skip pills. There was a bunch of different tests i had done. i had an hsg done, bloodwork, etc. But it is better to know you have it then not to know. It is also something that you can control. My doc has told me it will be difficult to conceive but it will happen. So em.....if you need someone to talk to about it just let me know.

I'm not very concerned about having another just yet. I plan on waiting a few more years, but I am concerned that age may be a factor when it comes to PCOS. I'm just keeping my fingers crossed. Thanks for your help!

 

[alex]

Clomid is a low level infertility drug. It is usually the first step a doctor takes after minor testing for women who are having trouble conceiving. The heavy duty hormones (usually injected) are seldom prescribe by a general OB/GYN.

It sounds like you have a minor case of PCOS since you already had one child and that may be why your dr is using BC to regulate your hormones.

I found local OB\GYNs, when told about PCOS, automatically jump to putting me on BC or Provera. Even after I tell them I run high blood pressure and don't want to take these drugs. That is why I recommend seeing an endocrinlogist if possible.

Glucophage is a pill that can help if your blood work comes back that you are insulin resistant but not yet a diabetic. It can keep you from becomming a diabetic.

One of the PCOS websites has a really good brochure you can print and take to your doctor. It really helps them to get you the correct treatment.

 

[alex]

Hardly - I would be leary of placing too much on the doctor telling you that you will be able to conceive later on. When I first realized there was something wrong - no periods for several months at time, sometimes years - I went to several doctors. Each time they told me not to worry about. Once I was ready to have kids it would work out.

Well I can tell you right now that they were WRONG! WRONG! WRONG!!!! It didn't work out at all. No decent doctor should tell you something like that.

Also, I have never heard of being able to control PCOS. How do you do that? I would sure like to know because I hate my thinning hair and would love to have my thick locks back.

 

[hardlyworkin]

alex

I was told that you can take the pill to get your hormones and everything back to normal for the time being. This stuff never goes away. I haven't had any symptoms of loosing my hair or anything. The only major symptom I have had would be no period. Not unless I have had some symptoms, and don't realize that is what they are for..........

 

[alex]

Yeah they told me that too but my BP spikes up on BC so I don't like to take and then when you go off it they go out of wack again.

Plus fertility treatments (which are basically hormones) don't always help.

My hair didn't start to thin until I reached my mid-30's and again it may be that your case of PCOS is not severe as mine.

 

[hardlyworkin]

The thing that bother me the most with PCOS is you really don't know you have it until you get tested. Some women would think it is a blessing not to have a period. I don't think my case is that servere, I do know I have had this for a while. I was on Noraplant from the time I was 15 til I turn 18 and took it out on my own. I am now 21, and I think I have actually had maybe 6 periods on my own since then. It sucks!!!

 

[alex]

ememdee19 - had a thought last night about your medical insurance problem. how does Tricare handle testing for diabetes? I know that most doctors refer people to endocrinologists for this. Can your GP do this for you? Once there, you can get the diabetes testing since it can be a part of PCOS and then the rest of the stuff for PCOS.