PCOS anyone? (Full Version)

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NightDaughter -> PCOS anyone? (8/6/2004 9:24:43 PM)

Well I've had PCOS (Polycystic Ovarian Syndrome) offically since the start of this year. Though according to my doc, its likely I've actaully had it for the past 15+ years or at least since i was about 13 y/o.

At any rate I'm curious to know if others here also have PCOS and if so, how did you learn about it? How has it effected your play? How does your partner or partners feel about it?


Well take care everyone




MistressDREAD -> RE: PCOS anyone? (8/11/2004 6:17:46 PM)


PCOS is not the easiest thing to live with.
I Im glad that you finally got it diagnosed
but sad to know that if it got to the point
that it caused you to develope insulan
problems it is a fact you have had it for
sum time. There are so many other
health issues that are associated with this
including infertility, and abnormal bleeding
that if a hemophiliac can be life threatening.
Did your diagnose include removal or is diet
and change of lifestyle being tried for now Im
currious? Are you keeping tract of your estrogen
levals reguarly now? Hyperinsulinemia should be
kept close watch on as well. and Im sure you
have allready experianced the increase in body
hair and lower voice and thick body right? and
dont let the darkening of skin in thick areas of
your body worry you as this is a effect of the
insulan intolerance. Take care of your self
and get plenty of rest and if you have not looked
into the removal of the cycts do so if they have
been deemed operatable to save the overies if
anything not knowing how old you are. Not having
to take hormone treatments by keeping healthy
the overies makes life soooo much easier for woman.
JMO and experiance with others on the subject matter.




MistressDREAD -> RE: PCOS anyone? (8/11/2004 6:21:04 PM)

Ohhh yes one more thing,,
Keep tested for lost enzimes
and ACTH levels
that could cause congenital
adrenal hyperplasia [heart
troubles] JMO




NightDaughter -> RE: PCOS anyone? (8/12/2004 4:59:25 AM)

Hi MistressDREAD, its true its not easy to live with but like everyone out there, one still have to keep on living.

My OBGYN and Doc have said nothing about getting anything removed (save any cysts that get to large).

At this point in time, I am making dietary changes (which Master's help), with luck that will help get some of the things back on track.

My doc is keeping track of my estrogen levels, thus far no change (then again my T levels are high so its no wonder that my estrogen levels are low).

I've actaully not had any increase in body hair (infact, save for my head i'm prity hairless - and that's without shaving which i've not had to do yet in my life).

The lower voice, now that I have had since I hit my teens (I've never had a high voice, the only high voice I have is when I sing then its that of a dramtic high saprano).

And yes the weight issue has been an issue, again since I hit my early teens.

As to my overies, its still unknown if I have two or just the one (all ultrasounds have only ever spoted on of them, and not both. So things are beeing kept an eye on.

Well take care, and thanks for posting.




PranksterBitch -> RE: PCOS anyone? (9/4/2004 10:41:12 PM)

I was diagnosed in 1981 by Dr Robert Jaffe. It took all day in SF with 1/2 hour blood draws. At that time they called it Stein-Leventhal Syndrome. It's really frustrating at times, but staying low carb has been a big help along with the glucophage. I have two children, and the treatment for both infertility and insulin resistance has come a long way. Hang in there .. and find a doctor who gives you the time to talk about all the issues you have concerning PCOS.

It doesn't affect my play or my life much. I just can't let the extra weight sabotage my happiness. Depression is a side dish as is hair growth and acne, but excercise, lots of water and lower carbs in my diet have kept that from developing for me. Hang in there :)




srahfox -> RE: PCOS anyone? (10/18/2004 11:28:46 AM)

yep, it sucks. Unfortunately you may have to ask your doctor yourself about if you need surgery, unfortunately there are a lot of doctors that just don't give you any information about it at all. As far as play, never had any problem with that at all. However you name a symptom and I just about have it. Including not being able to get pregnant. Fortunatly we just got good insurance and I'm on my way later this month ot see what can be done.
Just ask questions, a lot of doctors out there don't really know alot about pcos or they just don't think to tell you. (I was on meds that made my hair fall out, I stuck with it, not knowing at the time that we weren't trying to cure it. When I went in with half of my hair gone and asked if we were curing it I was then told there was no 'cure'.
But really there is very little you should have to avoid as far as play goes.
good luck and never forget to ask questions




MistresKatamaura -> RE: PCOS anyone? (10/19/2004 12:43:01 PM)

I was diagnosed by a doctor into the scene in Beverly Hills, Ca. I was diagnosised with it in 1996. PCOS sufferers are more likely to have prediabities or diabites. We all have hormone imbalances. I control it with diet and medication. Most never need surgery. Some doctors now won't remove the uterus. In the beginnings of PCOS they did remove the uterus. That made the hormone imbalances worse. Remember the uterus does produce hormones. But, the proclivity for not processing insulin properly in PCOS is the hidden problem. Managing this is the key to staying healthy. Make sure your doctor is treating the symptoms as a whole and not in little itty bitty parts. Testing for insulin, sugar, liver function, kidneys, thyroid, pitutary and Blucose tolerence tests are paramount to knowing how healthy you are.


To have PCOS you have to have 2 the symptoms in the DSM. No one has all of the symptoms. PCOS doesn't have to control you. You can control it. When you feel tired cut out all the wheat and rices. Cut out the wheats in bread, pasta and no white rice. You can make bread with soy flour. Brown Rice instead of white. Soy pasta instead of Semolina. Then soon you mightl feel better.

You can play all month. BDSM play is like anything else. No harsh extremes. No fisting. You will be more likely to bleed on your cervix if you have PCOS. I do play with submissive females with PCOS. If you are out of sorts, don't play. If you feel good enough to play do so. Allergies and asthma can play a part. I will spell it out. If you had an asthma or allergy incident that day or 2 days previously DON'T play. You will be more likely to have another. Let your body heal. Play is play, your good or bad health can mean living or dieing. Accidents do happen when people are run down or think that they are ok. You can't see inside your body. You can't monitor the beginnings of a silent attack comming from your body itself. Be safe and careful.

Mistress Katamaura




littlerosie -> RE: PCOS anyone? (10/24/2004 10:45:47 AM)

Hi,
Just to say that there is a misconception, understandably due to the misleading naming of PCOS, that the PROBLEM is cysts on the ovaries, actually it is just a symptom. PCOS is
actually a hormone imbalance causing many different symptoms. Removing the cysts or, god forbid, the ovaries, uterus ect will do nothing except send the body into hormonal shock causing a dramatic worsening in symptoms. This explains the dreadful reactions of UK woman who were until recently prescribed a high dosage version of the birth control pill.
As MistresKatamaura says, boringly enough the best way to control PCOS is through diet, cutting out all that refined wheat and gluten, drinking lots and lots of water and taking lots of exercise to regulate the testosterone and blood sugar, many women also have a good reaction to acupuncture.





MistresKatamaura -> RE: PCOS anyone? (10/30/2004 1:36:10 PM)

My roommate was just diagnosed this past Thursday. Her GYN is shocked that she actually had it. Just as shocked with the 1 1/2 inch cysits inside each of her ovaries.......I think sonograms should be required in all gyn exams. Then we would have less women going thru horrible problems with everything from weight problems to other problems associated with PCOS.




NightDaughter -> RE: PCOS anyone? (7/24/2005 5:45:07 PM)

Well since I did this post last year, a lot has happened with the PCOS. Its under control so to speak, and I've developed full type 2 diabetes instead of the IR that I once had when I was first told I had PCOS.

I hope that those who also have PCOS have had a good year and not had to many complications because of it.

Oh and my group PCOS and BDSM is still going strong, no thanks to the site that hosts it hoes deleted it a couple of times .. chuckles.

Take care everyone.




greenie -> RE: PCOS anyone? (7/26/2005 12:40:09 PM)

I'm guessing that this thread is old but I had to throw in my 2 cents. I have always known something was wrong since I started my period at 12 and they were always at least 3 months apart but I couldn't talk to my mother about things. I was involved in a long term relationship w/o any birth control and never got pregnant, somehow I knew it was me and not him. When I married we decided we wanted children right away so I went to a ob/gyn to find out what we had to do and he diagnosed me with endometriosis (thanks to a laparoscopy) which is where the endometrium (normal lining of the uterus that is shed with the menstrual cycle) is emplanted in other areas other then inside the uterus, usually outside the reproductive tract. Mine was on the cul-de-sac of the uterus. He said that was the only thing keeping me from getting pregnant and causing my irregular periods. "But Dr. what about all my other symptoms?" Yes I have almost all of the physical symptoms of pcos minus the cysts and deep voice. He replied "they aren't severe enough to consider". He put me on Lupron which puts the user into temporary menopause with ALL the side-effects of menopause. Can you imagine going through that at 23 and newly married? Awful! My poor ex-husband. LOL no wonder he's my ex. Anyway after 3 months I wanted another opinion and this time from a reproductive endocrinologist (fertility specialist). No cysts and hormone levels were barely out of the ordinary however my physical symptoms pointed straight to pcos. We did do fertility treatments with alot of heartbreak but finally decided adoption was our only option. I now have 3 beautiful girls, siblings with same birth parents. I still suffer all the symptoms but they have gotten worse over the years and no I don't take anything for them, waiting for that ever elusive cure lol, and my periods are now about a year apart with the occassional spotting. I admit that my biggest problem is embarrassment by this "condition" and try to hide the symptoms as much as possible. I don't know about you others but this has seriously affected my self-esteem and it makes me feel ugly. On the surface I'm somewhat attractive but it's all smoke and mirrors.
BTW you'll notice I didn't mention my symptoms, that's how embarrassed by them I am.




subversiveone -> Newly Diagnosed (8/2/2005 6:57:31 PM)

As of 2 weeks ago i too have discovered i have PCOS.
ive been offline until today so im just now researching it.
The mass on my right ovary is large enough to be removed but we're trying hormone therapy first. Left ovary has less than a dozen cysts.
This explains soooo much in my life. i exhibit all of the symptoms i've heard of and am most concerned about the insulin resistance so far.
Are any of you on glucophage or similar?
Can i regrow my hair (head)?
Should my doc lyse the cysts or just take the whole ovary? He's talking removal but i don't want that....
im going to join a PCOS email discussion group but until then, glad to see others here to talk with!




boynicholas -> RE: Newly Diagnosed (8/4/2005 2:13:12 PM)

Some of the comments I am responding to are older, but bear with me.

In order to be diagnosed with PCOS, someone must have two of three diagnostic criteria:
1) chronic decreased or no ovulation (often manifest as decreased, irregular, or no menstruation),
2) multiple ovarian cysts, and
3) some evidence of elevated androgen levels.

Now that does not mean that those are the only manifestations of PCOS, but that these are the diagnostic criteria. For example, to diagnose diabetes, you need to have persistently elevated blood glucose... but you may get a lot more symptoms than that, and those other symptoms may clue your provider in to test you for diabetes.

So in addition to the diagnostic criteria for PCOS, some of the symptoms may be the following. However many women with PCOS have few or no symptoms. But you can get:
Pelvic pain
Decreased fertility
Signs of excess androgens: hair where you don't want it (and falling out where you do), acne, deep voice, increased muscle mass, changes in sexual arousal and response, etc.
Metabolic problems: overweight/obese, glucose intolerance or even frank diabetes, etc.

It is also important to understand that not everyone who meets those three criteria (or has some of the symptoms listed) actually have PCOS... there are other diseases that can have a similar presentation which are not PCOS. For example, NCCAH, non-classical congenital adrenal hypertrophy, is probably one of the most common 'masqueraders' for PCOS. So it is important not only to meet the criteria for PCOS, but also to rule out other causes of hyperandrogenemia (elevated androgen levels) which can cause ovarian cysts and decreased or anovulation.

Some (but not most) doctors actually routinely send an ACTH stimulation test or an am 17OHP level to rule-out NCCAH in newly diagnosed PCOS patients.

If your doctor did not do this, don't automatically assume he's a quack. It is fairly standard to not do that... mostly because it may not necessarily change management that significantly. And the goal isn't always to know exactly what minutiae of biochemistry causes your problems, but rather to fix the problems and ensure you are happy and healthy (i.e. to treat symptoms if there are any, and to prevent bad future outcomes.) So since PCOS is much more common, it is reasonable to treat someone as if they have PCOS, and if all symptoms resolve and there are no further problems just stay with what works. (Also its important to realize that regardless of which is the diagnosis... there is no magic pill to stop pelvic pain, make you have a normal weight, make you fertile, etc. And a lot of the treatments are exactly the same.)

In addition, you should realize that the majority of women who truly have either PCOS or NCCAH... have no idea that they have the disease – mostly because they have little or no symptoms and are not bothered by it. Moreover, sometimes the 'treatments' may be worse than the cure. So often in medicine, you need to remember that 'if it ain't broke, don't fix it' is a good policy.

Now, there are certainly some things we know that should be screened for: cervical cancer, high blood pressure, alcohol abuse, high cholesterol, breast cancer, diabetes, colon cancer, etc. But all of these diseases have somethings in common:

1) undiagnosed, they all cause problems for most people who have them,
2) we have decently accurate (and inexpensive) screening tests for them that can detect disease when it is either asymptomatic or with few symptoms,
3) if you diagnose it early, you can change the outcome of the disease.

However, not every test medicine has, or disease that we diagnose fulfills these criteria. In fact, in some cases, doing more tests and more treatments can be actively bad!

A really good example of this is those 'whole body CT scans' that were en vogue a few years ago. You could walk in, pay a grand or so, and have a head to toe CT scan done and read by a radiologist. The rad made some money. The guy who had the scanner made some money. The person getting the CT would either get 'peace of mind' or maybe early diagnosis of a cancer that would kill them. Plus this was out of pocket, so its not like it was taking money away from other health care services.

Sounds like a great idea right? In their ads, they would have these testimonials from 40 year old people who had an early small renal cell carcinoma detected that would have meant their almost certain death within 5 years. And I will tell you, those testimonials are probably entirely accurate and true. If that smiling guy in the picture hadn't had that CT, he'd have been in a casket today.

But I didn't get one. And in fact, I could order my own today, easily afford it, and still have yet to ever climb on a CT gantry in my life. Why not?

First and foremost I like to avoid all radiation possible, but also because of the people they don't tell you about in the ads. For every early asymptomatic renal cell cancer they detect, they have a dozen of the following: middle aged father of 2 gets a screening CT with one of these 'pick your scan' outfits – only his chest, because he's a smoker and he's worried about lung cancer. Well... they found something. A very worrisome mass deep in his lung that, given his history, and now knowing this scan result, has about a 50% chance of being a malignancy.

So they tried a CT guided needle biopsy. They couldn't get it, although they did succeed in giving him a pneumothorax – collapsed lung. So they went to the OR and did an open lung biopsy. While undergoing the surgery, he had an idiosyncratic adverse reaction to one of the medications he was given. He almost died and in fact had a heart attack on the table. He spent 2 weeks in the ICU and this was complicated by an episode of sepsis – severe hospital acquired infection, and a pulmonary embolus (blood clot in the lung).

When he was finally discharged from the hospital, he was unable to work, on half a dozen medicines for his congestive heart failure, to keep him from developing another clot, etc. His wife had to take FMLA to stay at home and take care of him because he couldn't even bathe himself. Eventually, since he was an otherwise healthy middle aged man, he did regain some of his health. He was able to return to work part time and actually got to see his two kids graduate from college – which was what motivate him to get the scan in the first place.

Oh, and the biopsy was negative. It was probably an old granuloma from a fungal infection he had in his youth.

The moral of this story though is one of the rules of the 'House of God' (great book, BTW) - “13. THE DELIVERY OF MEDICAL CARE IS TO DO AS MUCH NOTHING AS POSSIBLE.” Though, while most of the rules of the HOG are absolutely true 9 and 13 are the only ones that should be qualified... I would rephrase 13 as “The delivery of good medical care is knowing when to do as much nothing as possible.” That is, unless its something for which there is a good evidence base for screening and unless the person has symptoms, don't look for trouble. Moreover, if the person has symptoms, the safest and best method is doing those tests which are the ones that will answer a question and are the least invasive and least likely to lead you down the path of causing iatrogenic assault on your patient.

And so I judge a physician as better in general if he does less tests or diagnostic procedures. (The only exception being those tests that we have good evidence help more people than they hurt by screening: http://www.ahrq.gov/clinic/uspstfix.htm)

Nick




boynicholas -> RE: Newly Diagnosed (8/4/2005 2:26:02 PM)

quote:

ORIGINAL: subversiveone

ive been offline until today so im just now researching it.
The mass on my right ovary is large enough to be removed but we're trying hormone therapy first.


Yes! Surgery is only if you can't do something with medicine.

quote:

ORIGINAL: subversiveone

This explains soooo much in my life. i exhibit all of the symptoms i've heard of and am most concerned about the insulin resistance so far.
Are any of you on glucophage or similar?


Your doc is on the right track with glucophage. The more we learn about that drug in PCOS, the better it looks. Its also an older drug that is cheap, and more importantly, been used in gajillions of people so far. Thats always preferable to the 'new' pill.

And the insulin resistance is probably the most worrisome 'long term' aspect of PCOS (really the whole metabolic syndrome which insulin resistance represents.) And the best thing to treat that with is diet and exercise. It sucks and its the hardest, but you can do it. Though after that (and perhaps even with success) glucophage is also great. Though if you are overweight and lose the weight, the majority get significant improvement in PCOS (if not making it no longer detectable.)

quote:

ORIGINAL: subversiveone

Can i regrow my hair (head)?


No, sorry. But you CAN make further hair loss less likely by decreasing the elevated androgen levels – with weight loss, glucophage, and even if necessary, some doctors use use antiandrogens (if there is NO chance at all that you will get pregnant.)

quote:

ORIGINAL: subversiveone
Should my doc lyse the cysts or just take the whole ovary? He's talking removal but i don't want that....


Negative. Negative. Danger Will Robinson. Danger.

Surgery is for when medicine won't work.

Mother Nature gave you two for a reason. She wants you to keep 'em.

That said, if you have symptoms that are untreatable by any other acceptable means or if there are other good reasons to take it out, go for it.

Its like I said about Rule #13 from the HOG: ““The delivery of good medical care is knowing when to do as much nothing as possible.”

Nick




subversiveone -> RE: Newly Diagnosed (8/7/2005 9:22:25 PM)

Nick, I should've said this sooner, but THANK YOU... Lots of great info. How in the world do you know so much about PCOS? Just curious....
I'm not trying to conceive at the moment but I dread the difficulties when we do.
One comment my doc made does seem a little off. Upon reading a 'checklist' id answered he matter-of-factly said "Menopausal are we?"... I didn't know what to say. Yes, I think I get the occaisional hot flash, hormone imbalance, scratchy/lowered voice, etc But peri? I don't think so... Of course this was a few min's before he really go to the heart of the matter:PCOS. From what i understand, the symptoms are so similar, given my age one wouldn't usually go jumping to menopause.
Keep up the great posts!




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