PCOS

[luckystar112]

I decided to start this thread as to not hijack Gypsy's thread in BWW.
It seems like a lot of us girls have PCOS, and I was hoping that we could talk about it here.

As for me, I haven't been officially diagnosed with anything yet, but something is definitely "wrong". I went from a face as smooth as a baby's bottom to looking like I'm going through puberty all over again.

And the weight gain....I've definitely noticed that I've gained about 10 lbs since I've started noticing the acne.
My biggest symptom though, is my cycle. I used to have very regular periods, and now I'm lucky if I get AF every 50 days. This has been going on since August. Right now I'm on day 34 with no AF in sight. And judging by the last few cycles, I'm assuming I won't see her for about another two weeks.

So I ask, for those that have it...

How were you diagnosed?
What are you doing to manage it?
Are you afraid that your ability to conceive is threatened?
Any other ways it impacts your life?

Seems like a lot of doctor's (at least mine) have blamed my symptoms on stress. Like I don't know my own body.

Also, I guess there really isn't a whole lot of information out there. One of my doctor's, after asking about PCOS, said if I had it I would have stopped having my period completely.

Also, I read on a website that there is actually no way to diagnose it....which is why I was surprised when Gypsy said she found out by having an ultrasound.

I hope this thread will be beneficial to all of us who have PCOS, think they may have it, or just want to learn more about it.

 

[somethingshiny]

I only have time for a quick post, but since i think this affects women so severely, I wanted to jump in.

I was diagnosed by my 4th doctor. I had been trying to conceive for 4 years with no luck (and miscarriages). I had only a few of the symptoms of PCOS so the first 3 doctors kept saying I was fine.

The 4th doctor saw me and within 5 minutes told me I had PCOS and endometriosis. The only definitive diagnosis though is through laprascopic surgery. I had that approx 2 weeks after my initial appt. I was put out and had three small incisions. they took out all the cysts and endometrial tissue. Then, I went on a Lupron injection. I was supposed to be on it for 6 months but it made me crazy so I quit after 3-4 months. During that time I was also on a progesterone pill and an estrogen patch (after the first 6 weeks). The pain, heavy bleeding, etc all immediately stopped.

I still didn''t get pregnant for almost 2 years, but I carried to term which was a miracle for us. We were TTC since our son was born (he''s 2) without any luck. And, actually, yesterday I went on Yaz. I''m so screwed up again that I need to get regulated before we can continue TTC.

I have a very hard time with my weight. It takes a long time for my body to respond to diet or exercise. In fact, my doc is just happy when I can keep my current weight. Apparently it''s hard not to continuously gain for most women (including me.)

One of the other symptoms is excessive hairiness. I''m blonde and very fair skinned, but I get dark hairs sporadically around my body. I love my tweezers! I have to shave my legs and underarms everyday. Within 3 days, I could look like I was wearing socks!

It''s a pain in the butt (or abdomen really). It''s frustrating and disheartening, but for the most part, with a good doctor, it''s manageable.

 

[Gypsy]

Hi Lucky. I was only diagnosed a year ago, and I guess the best way to describe what''s going on with me is the diagnosis overwelmed me and I''ve been in denial.

We don''t know if we want kids, so we aren''t TTC or planning on it any time soon, so I wasn''t devastated the way others have been.

I was surprised by the diagnosis because I had an edocrinologist order blood tests for it, which came back pretty normal. But then I went for an internal ultrasound, and next thing I knew I was told that the ultrasound showed that I had it.

I do have excessive hairiness. My chin. Is. Disgusting. Nasty. Arms and hair are heavy, but I am middle eastern so I don''t know to what extent those are affected. But my chin is ABNORMAL. I''m not like a man, but... what I get are these horrible thick black hairs clustered.

My skin was just like I was going though puberty again, like you said.

My weight was NOT budging.

So, I went on Metformin, and Yasmin. My skin cleared up and looked better. I combined it with portion control and walking three times a week for an hour (2.5 miles) and lost 17 pounds in 2 months.

But I hate pills, hate having my life regulated by them, and went non-compliant after a few months. Skin got worse, my chin is worse... my weight is terrible.

So, that''s really my story to date. I don''t know if I REALLY REALLY have it. Like I said, I think I''m in denial. I don''t want to have it so I doubt the diagnosis.

I have to say that knowing I''m not alone. And seeing the posts and the advice and the stories on the BWW thread is just amazing. I have to respond to each of the posts in BWW, and well, its scary, because it''s facing something I''m still not sure I''m ready to face.

Sometimes we talk about having kids. And then everyonce is while there is this bone deep terror of infertility because of PCOS. And then I remind myself that I''d me fine with adopting a child from a foreign country. And that like my cats, there are unwanted children in the world who need a good home, that have been cast away and are adrift... and that I can bring home and love. It helps. But, if I had to be honest, the terror is still there. It''s like the CHOICE has been threatened. The choice of procreation. And it makes me sad, and frankly, angry.

Don''t know if this helps you... but that''s what''s been going on with me.

 

[somethingshiny]

I've found this site very useful and informative -- PCOSupport.org. And here is a quiz that is available thru that site. If you have these symptoms, DEFINITELY get further info.

PCOS Quiz

This quiz is intended for educational and informational purposes only. In no way should this information be used as a substitute for medical advice, and PCOSA strongly recommends discussing this information with a qualified personal physician. PCOSA will not be liable for any damage resulting from the use of the information on this site.

Section 1: Menstrual Irregularities

Score one point for each item unless otherwise indicated:

When not on birth control pills, do you have or have you ever had any of the following problems:
-- Eight or fewer periods per year
-- No periods for an extended period of time (4 or more months)
-- Irregular bleeding that starts and stops intermittently
-- Fertility problems
(Score 2 points if you have seen a fertility specialist or been treated with fertility drugs to induce ovulation.)

Section 2: Skin Problems

Score one point for each item unless otherwise indicated:
-- Adult acne, or severe adolescent acne
-- Excess facial or body hair, especially upper lip, chin, neck, chest and/or abdomen
-- Skin tags
-- Balding or thinning hair
-- Dark or discolored patches of skin on your neck, groin, under arms or in skin folds.
(Score 2 points if you answer yes to this question.)

Section 3: Weight and Insulin-Based Problems

Score one point for each item unless otherwise indicated:
-- Excess weight or difficulty maintaining weight
(Score 2 points if your excess weight is centered around your middle)
-- Sudden unexplained weight gain
-- Shaking, lack of concentration, uncontrollable hunger and/or mood swings 2 or more hours after a meal
-- Type II Diabetes
(Score 2 points if you answer yes to this question)
-- Family history of Type II Diabetes, Heart Disease or Hypertension

Section 4: Related Problems*
*Although there is little or no documented research, many women with PCOS have experienced the following problems.

Place a check mark next to each applicable item in this section.
-- Migraines
-- Depression and/or anxiety
-- Rapid pulse and/or irregular heartbeat
-- Pregnancy complications such as gestational diabetes or excess amniotic fluid


Here is the complete scoring card for your reference:

0 - 4 points
Although PCOS is possible, it is much less likely for you than for those scoring higher.

5 - 9 points
If you are concerned about your health and score in this range, you may want to consider talking to your doctor about the possibility of PCOS, as well as other disorders.

10 - 15 points
PCOS is a syndrome, not a disease, and most women experience some but not all of the problems listed above. The majority of women who are diagnosed with PCOS score in this range. If you scored in this range you should see a doctor about the possibility that you have PCOS.

15 - 20 points
A score this high warrants urgent consultation with a doctor for PCOS or other endocrine-related disorders.

PCOS Support Group

 

[Gypsy]

Hmm. I scored a 10.

 

[Clio]

Both my mother and my sister have PCOS, and I''m pretty certain I do as well. I got a 7 on the little quiz.

I brought it up at my last checkup, but my Dr. thought that because I''ve had no trouble with conception (3 kids in my 20s), I probably don''t have it. But, neither did my mother until she hit her 30s, and now that I''m in my 30s my cycles have gone seriously wacky.

I''m planning soon to make an appointment with either an OB/GYN who specializes in PCOS or a reproductive endocrinologist.

 

[nytemist]

I was officially diagonosed fall of 2006, but my doctor suspected that I had it long before that. Years ago my cycles used to be so spot-on regular you could set your clock by it- count 28 days and I''d get it. Then one year I had a period in January and didn''t have another until May. That year I only had four. She started to moniter things after that. Then in summer 2005 I started spotting pretty much every day, until about November. Spring of 2006 she and a specialist went through the entire checklist with me, I was/am having a hard time losing weight even though I eat healthy majority of the time. There are insulin issues but I''m not diabetic at all. The worse symptom is the increased hair growth, I HATE that. On black skin, all the new hair folicles on my jawline, neck and upper chest make dark spots.

So in 2006, in between wedding planning and work, I was going to the dr.''s office evey two weeks to have blood pulled, have uterine samples taken, ultrasounds (to check for fibroids, cysts or other things) and my weight monitored. I was so down about not being able to really lose any weight before the wedding. I was tired of the continuous spotting, (having to wear a panty liner every day) and wanted to have the Mirena placed since they make your periods lighter (in my case, stop) We covered all the bases (saying we don''t want kids, but I really didn''t want TL surgery) so just to make triple sure that it was the PCOS/ovulating issue, I was put on ten days of progesterone to give me a period so they could put in the Mirena. I sat with the specialist for my 3 month check up April 2007 and he said my blood work is fine, I''m still not diabetic, he stressed that women with PCOS have a difficult time getting pregnant, since I have the Mirena and don''t really ovulate. I had about a 5-10% chance of conceiving even without the IUD. He said if I could live with the hair growth, I was ok.

Sorry so long but anyway:

-I was officically diagnosed fall 2006
-Not really doing anything to manage it, except really watching what I eat to try and keep my weight down. Not concerned about fertility since we aren''t having kids.
-The only impact is the spots on my skin. They really bother me. I''ve been using Ambi cream for lightening dark spots. It just sucks that every couple of weeks I have to shave my jawline and pluck my upper chest. Haven''t noticed an increase of hair on my legs, or any balding.

 

[somethingshiny]

SoulCysters is another great site for PCOS support. I don''t post on the forums myself, but I do read a lot on it. This particular link goes to a very helpful thread.


NYTEMIST~ Have you tried Vaniqa? I''ve heard it really helps decrease hair growth, so it should also decrease the follicular look as well.

and

A friend of mine also has PCOS with severe hair-thinning. Currently she''s being treated with Glucophage and somehow it has stopped the hair loss and she''s growing hair again. Don''t know if it specifically relates, but I thought I''d throw in that info.

 

[Courtneylub]

I just posted this in BWW.

"I haven''t mentioned this until now, but I was told by a OBGYN a few years back that I MAY have PCOS. Since then I have had a couple of cysts, one that ruptured, but it hasn''t been too bad lately at all. How would I know if I for sure had it? I have pains where my left ovary is about once a month. This causes insulin resistance? Which is what exactly...what is the result of that? Weight gain, slow metabolism?"

I only scored a 2.

 

[lisa1.01fvs1]

Hi Lucky and everyone here

Lucky I know we wrote to eachother in TTC and the possibility of PCOS.

Are you trying for pregnancy now?

If so get thee to a RE now.

After my visit on Wed. I am so relieved to have a Dx and plan. I don''t have PCOS but was definitely a candidate based on my cyst Hx.

There are many Tx and the specialists can really pinpoint where to start.

All women should have an antral follicle count to see what her ovarian reserve is. Some 20 yr olds can be infertile while 40+ can continue having pregnancies - go figure.

Age is not the most deciding factor in fertility.

Keep updates on your progress......

 

[swimmer]

Hugs to everyone who is struggling with this.
Well, I found the fastest way to get a gyno appt is to say, "well, I haven''t had a period in about six months." Yeah. Try it sometime, they miraculously find space for you. I hypothesize that my exercise anorexia (amenorrhea) is somehow connected to my PCOS. At age 7 I started swimming year round two practices a day. My friends got their period at 14...I was 17 and it never got regular. but being 5''10" and 140lbs (and able to bench press more than that), that wasn''t surprising to anyone. It was during grad school when I stopped working out so much that I started getting chin hair and gaining weight. My MD noticed that I have my armpits and inner thighs are tan year round (that is the skin discoloration mentioned on the quiz), and told me to never eat processed foods. Great tip.

Gypsy, I totally hated the idea of taking Metformin. No idea why. I just hated the lack of control on my part. But its like what my mom tells her patients (she is a therapist) who don''t want to take their meds, "OK, go home and change your brain chemistry." We can''t change our bodies'' chemical makeup. It took me a few weeks of uncomfyness, but I am now addicted to Metformin. Started out at 750 1xs and now take it morning and night. The lbs melted off and the migranes left. I had been about 180lbs, which is fine for being so tall, but I wanted something less statuesque and when I ate as little as 300 calories a day for months all that would happen was fainting. I am probably insulin resistant. Not sure, but the Metformin now keeps me regulated. When I forget to take it, or skip a meal I have terrible results. Think Steel Magnolias on her wedding day.

Even with the Metformin and Yasmin, I have to work out every day. It regulates my sugar and keeps the metabolism going. I now weigh about 155 to 60 and feel that is a fine place to be. I would not be there without Metformin. Its totally not fair. I work out enough to have a supermodel body and have to eat so carefully just to maintain normalcy. I still resent PCOS but was once in a study on it at Mass General (they gave me some cash) and seeing all the women who were in the waiting room to discuss it was really moving. Do you see women out and about and want to tell them that they have PCOS? That there is a reason for what is going on, that its not their fault for their weight, and the hair is connected to a medical issue? I hate this condition, but I decided about a year ago to beat it and it seems to be working. I know that you can overcome it as well, but its still not fair and its not easy. More from me later, gotta run.

 

[luckystar112]

Hi Girls!

Somethingshiny, thank you so much for chiming in. It really is such a severe issue, and it's so good to know that we aren't alone. Thank you so much for the links to other sites. One question, What did your 4th doctor do that the others didn't? Did he/she do a different test, or did he/she just know more about PCOS than the other drs and you got lucky? It just seems like not many drs know what the heck I'm talking about when I bring it up to them.

Gypsy, Sorry this has been so awful for you. I have a question for you as well. Since your bloodwork came back normal, how did you decide to go ahead with an internal ultrasound? Did the doctor suggest it just to be sure or did you have to insist?

Nytemist--thanks for your story. I wish they knew what caused this!

Courtney--funny you should say the thing about your left ovary. I get weird pains in my RIGHT ovary every once in a while...and it's hard to explain, but it feels like the whole right side of my groin/bikini line just feels "different", not bad, but just like I'm more "aware" of it. Hard to explain....

Lisa I'm not trying for pregnancy now but I REALLY just can't wait to get this figured out. We'll probably end up trying for children in the next 3 years and I want to make sure that there are no surprises that will cause us to have to wait. Not only that, but if there IS someting wrong I'm worried about it getting worse!!! BTW, what is a Tx? Oh, and good point about the antral follicle count. How do they do that...with an internal ultrasound as well?

Swimmer--I should try that. Tell the secretary six months and then tell the Dr. I have no idea what she's talking about.

I got an 8 on that questionnaire, but there are certain things I couldn't answer...like if I'm having problems conceiving or the 8 or fewer periods per year (it hasn't been a full year yet but its looking that way!!!). I don't have a problem with excess hair anywhere, which seems to be pretty common. Could I not have that symtom but still have PCOS?
Really my BIGGEST fear is not being able to concieve, and it's so true that it's so much worse when you feel like your choice is being threatened.

You know what I'm really sick of though? Being told over and over again to get on BC. Here's my thing...I haven't been on BC in about 3 years. FI and I do the bare minimum to prevent pregnancy without completely throwing caution to the wind, and I guess I always thought we were "lucky". Heh. Anyway, I don't want to get on BC. It seems to be every doctor's miracle drug for everything girl-related. But to me, unless my problem is a hormone deficiency, I don't see the point in "masking" the problem with BC. Drives me nuts.
It's like throwing a blanket on top of a pile of dirty dishes. Doesn't make sense to me.

 

[Gypsy]

I don''t have weird periods as a general rule. They used to be like clock work, and they aren''t as predicable anymore.. but I still get them regularly. That''s one of the reasons I''ve always wondered if the diagnosis was right.

Well, my OBGYN is the one who wanted the ultrasound so she ordered that. And my primary care ordered the bloodwork after talking to his endocrinologiest freind. So they really didn''t have anything to do with one another, in terms of scheduling. And since I have had a dermoid cyst removed, I wanted the ultrasound (did not realize it was internal... nope, you should have seen my face) to check for anything like that anyway.

 

[somethingshiny]

Lucky~ I wasn''t diagnosed by the first several doctors for a couple reasons. First, when I first started going to the doctor, it was a GP, not a gyne. Then, I went to a NP. I didn''t know my symptoms weren''t normal. I knew my cycle was screwed up, but I thought every one had cramps and I wasn''t about to tell the doctor that I had hair growing on my breasts! So, that''s why the first doctor didn''t diagnose it. And, during exams, none of the doctors could feel cysts. Then I started going to Gynes.

I went for pregnancy/miscarriage related issues. I wasn''t aware of PCOS at the time so I didn''t think to mention it. That doc did some minimal fertility treatments (Clomid, blowing out the tubes, etc). Even if he asked me the questions on the questionaire though, I would have only scored 4-5 at the time. So, by the "scoring system", it wouldn''t have been a big deal. I did have several ultrasounds during the fertility treatments, but the cysts must not have been apparent at the time or he didn''t realize what he was seeing.

Finally, I said I''m going to a fertility doctor. That''s the doctor who realized what it was right away. He''s the closest thing to a fertility specialist in my area although he''s just an OB/GYN, too. He told me what it was during the internal exam. He must have felt the cysts and he told me endometriosis was holding my uterus immobile. He performed the surgery.

When I finally got pregnant almost 2 years later, he had moved his practice to Florida. So, when I was looking for a new OB, I made sure the doctor was very knowledgeable with PCOS and endo. I found a woman doctor to go to and I was very happy. My insurance dropped that hospital 6 weeks from my due date and I had to go to ANOTHER doctor. He performed my c-section and is very proactive in taking care of all of this junk. He''s not one to immediately put you on the pill. And, he actually sent me to a gastroenterologist, too. He thinks that there are a lot of digestive, ulcerative, bowel problems that accompany PCOS and endo. That was completely new to me, and I don''t know for sure how accurate it is, but I went in to the Gastro for a consultation and was immediately scheduled for a couple exploratory procedures.

I''m not against the pill for treatment of PCOS because it is a hormonal thing to begin with, so it stands to reason that by regulating hormones, the symptoms could decrease as well.

And, in the spirit of knowledge, I''ll share my initial "symptoms"
-period every 18 days that lasted 9 days (not exactly the 8 or less)
-limited amount of excess hair, but I also come from a very hairy family
-difficulty maintaining weight (I think that''s most of the population though)
-mood swings and shaking with hunger (again, not a huge deal)
-migraines (that I have had since I was ten years old, so not immediately recognized as part of PCOS)

So, even with severe cysts, you may not present many symptoms.

Sorry for the super-long post.

And, if anyone has any questions about the different procedures or whatever, I''ll be glad to answer as much as I can.

 

[lisa1.01fvs1]

Hey Lucky (Tx) = treatment sorry for the medical mumbo jumbo.

Antral follicle counts are done w/ trans vag ultrasound.

So glad to hear you are being proactive. You probably won''t be one of those "opps I wanted kids but never bothered to get this checked" women who could have been helped.

You are all such an informed bunch.

Its too bad that we have to be our own advocates and assert things like "I haven''t had my period in 6 months!" (although true) to get an appt. or light a fire.

Hey its not thier fertility I guess.

Be loud, persuasive and unafraid.

 

[lauralu]

my teenage daughter is being looked at for this. They have done a ct scan and have seen cysts. I am waiting to hear from her dr as they next step. However she mentioned an ultra sound. My daughter is not sexually active and has already said no to anything internal going on (internal ultra sound) I don''t blame her......

She has some facial hair. Not a huge problem, but definitely worse than the usual chin and side of the face hairs. She has some acne issues. More so on her back than face. The last 3 years she maybe has averaged 3 or 4 periods a year.

she is not overweight as in obese. However she carries extra weight around her middle.

Blood work as all came back pretty normal. Northing jumping out at anyone.

She suffers from debilitating migraines.

This is an interesting thread....

 

[alli_esq]

hey...I''m new here, but I''ve been "unofficially" diagnosed with PCOS...

I never (NEVER) get my period if I''m not on the pill. And my gyno just took me off an estrogen pill and put me on a progestine-only pill in August...and I only got my first period since then 3 weeks ago (and then again 2 1/2 weeks later).

The hair and acne are the biggest problems I have...and I am very nervous about conceiving when my FI and I decide we''re ready. I told him long ago there was a good chance I couldn''t have kids--there''s LOOOTS of infertility in my family...in fact, my mom didn''t know she was pregnant with me until she was 6 months pregnant (yes, that''s not a typo); she was told there was a 99.9% chance she couldn''t conceive.

I wonder if the fact that it''s so hard for me to lose weight is related--I''ve had the period and hair problem for maaaany years, but only in the past two years have I gotten a ring around the tummy (not that I was ever really skinny). I haven''t been to the doctor since August (even though I''m long overdue for a checkup) because I have horrific insurance and won''t be on a better plan until this summer.

I''m curious--for those of you taking it, what does the Metformin treat exactly? It has never been suggested to me...

Just thought I''d pipe in, since I can relate.

 

[somethingshiny]

alli~ I don''t take metformin myself, but HERE is a link that gives a good overview.

 

[nytemist]

Somethingshiny- sorry for the late response. I''ve read up on Vaniqua but have not tried it. I don''t know if it would work. Meaning maybe hair will grow back since I will still have the condition causing it to grow, know what I mean? My friend (PCOS also) did electrolysis sessions and after 6 months of so the hair came back.

I''l do more research and see if it''s a good option though.

 

[CrownJewel]

PCOS is a lot more common than most people think, but not too many people know anything about it. I starting getting my period at age 11, and around that time I had my first fainting episode. My cycle was always irregular...ranging anywhere from 31 to 101 days. I never knew when AF would visit (maybe 4 or 5 times a year). None of my doctors were concerned. This past November, at age 27, I finally met Dr. B (my 4th gyn I think) who said, "hm, has anyone explained to you why your cycles may be irregular?" I told him no, all my previous docs said it was nothing to worry about but they never said why. Dr. B said "Indeed, it is nothing to worry about because you don''t have any of the physical characteristics of someone with PCOS. But let''s do an ultrasound so I can explain what''s going on."

So the ultrasound showed my ovaries with the "string of pearls" appearance, which is the term often used to describe polycystic ovaries. But once again, Dr. B said "there''s nothing wrong with that. For some women, they may have these cysts on their ovaries, but it doesn''t affect them in any way...it''s like saying, she''s about 5''0" tall, black hair, polycystic ovaries, brown eyes. It''s just a way to describe how you look." But my hormones are screwy and that''s why I don''t get my period regularly. I thought that was my only PCOS related symptom.

Then I went to see a dermatologist this February (probably the 4th dermatologist I''ve ever seen) who, upon hearing that I still have acne at age 27, none of the acne treatments have worked so far, and that I have irregular menstrual cycles said, "let''s do a blood test and measure your sex hormones." He figured the PCOS was screwing up my hormone levels. Sure enough I had higher than normal levels of testosterone. So he prescribed Spironolactone, which helps to even out the production of androgens (male hormones, which all women have). I love love love being on Spironolactone. I do have to get a blood test every 6 wks to make sure my potassium levels are good, because spironolactone is a potassium sparing diuretic pill. I''ve noticed so many wonderful changes since being put on spironolactone in the past 3 months. I''ve had thin-ish hair (not balding, no bald spots, I just have a really skinny ponytail) ever since my early teens, and lately I''ve noticed a lot of tiny baby hairs which may mean my hair is growing back thicker. I used to have to wash my hair every day because my hair would get so oily (but I thought it was normal) but now I can go 4 days or so before my hair starts to look gross. In general my hair has a lot more "life" and volume. My skin used to be so oily and clogged up, but now it''s so much better. And I think the PCOS may also explain my fainting episodes. There was never anything wrong with my heart, so the docs couldn''t explain why I was randomly fainting...but I think it has to do with how PCOS affects the way my body processes food sometimes. I do have to eat often or I will shake and get extremely grouchy and can''t concentrate, but I don''t have hypoglycemia.

Currently I''m not worried about conception. Dr. B (gyn) said that the only reason I may have trouble conceiving is because it''s like trying to hit a moving target, since I''ll never know when I am ovulating. I guess I got off lucky, because I don''t have the weight issues (just a couple extra pounds here and there, but it''s not serious) or the hairiness or the diabetes. For now I''m just perfectly happy with my spironolactone.

Sorry for the long post, but it''s so exciting to finally have an explanation for the past 16 years of wacky hormones!

 

[somethingshiny]

I know I''ve posted a lot here already, but I do think it''s a great thread to have for all of us.

I just wanted to share my recent experience with you.

As I''ve said, I''ve had cysts, lapro surgery, lupron, for short term results of lessened pain. I will start the pill Friday and see if that helps with the PCOS or Endo.

BUT---good news---I had so LITTLE pain when my period started this month, I actually didn''t know it was coming! I have been doing yoga (just a television program, not a class) several times a week for a few months. I haven''t exactly lost weight although I''ve seen a few changes in my physique. But, my pain has significantly lightened, even my "normal" cramps are better. Exercise usually made the pains worse, but his easy-going yoga has helped.

Just a thought for those who are having significant pain.

See ya, Cysters!

 

[lauralu]

Its official....the dr says she definitely has PCOS. They saw lots of cysts in her ovaries and have diagnosed PCOS.

The only thing she said to do to manage it was exercise, healthy eating and weight loss..

 

[somethingshiny]

lauralu~ Diet and exercise can help to manage the insulin resistance that often accompanies PCOS, but if your daughter is experiencing acne, facial hair, etc. the pill/shot could help. And as you can see earlier in the thread, glucophage is also used as treatment. It can help to restore periods, improve fertility (so she doesn''t lose it when the time comes) and helps with weight loss (because it allows the insulin in your system to work properly.)

I am not a doctor, but please, if you and your daughter are unhappy with this "treatment", seek a second opinion. I just wish mine would have been diagnosed and treated earlier, maybe I wouldn''t have had miscarriages for years.

Also, the PCOS often accompanies fibrous breasts. So, when your daughter does her self breast checks, make sure she knows to really get in there and feel. If she does have fibrous breasts, she may feel "peas". Sometimes they change with your cycle. She should have a good breast exam with a doctor and then keep a journal or something to keep track of any changes. Sometimes they are also painful.

Good luck to her and you!

 

[Gypsy]

CJ-- my dermatologiest perscribed me Spironolactone but I never got it filled. Denial. I''m terrible. I think with you experiences I will give it a try! Thank you! This thread has been so helpful.

Laura, I''m sorry your daughter has PCOS, but at the same time I''m glad they''ve caught it early, and I know that its easier to have a name and face to a problem that just a vague idea something is wrong. ((HUGS to you and your daughter)).

 

[lauralu]

Thank you ladies.....We are kind of putting this all on hold until summer and school is out as far as what step to take next. She has alot going on with school and all. She is suppose to take a 10 day progestron pill to bring on her period. However, I won''t be giving that to her until school is out due to the risk of a period from H*** and right now, she cannot afford to miss anymore school. She misses alot due to another health issue.

So far none of her blood tests have come back with anything out of the ordinary. Do you think that this is a careful watchful situation? Having her blood taken each year and watching for any irregularities? Like insulin resistance, high testosterone ect. She has been through so much the past few months health wise. We came close to losing her.

 

[somethingshiny]

Lauralu~ I don''t know what is the appropriate treatment for your daughter, especially considering she''s had other health issues.
But, if she has more facial hair (or hair on her breast, chest, etc) then she obviously has a higher than normal amount of male hormones. That is a problem right there. Is it enough to be treated for? I don''t know, but I''d get a second opinion.

btw- I started my period at 14, got married at 19 and by the time I was 20, I had my first miscarriage. So, in 6 years I had enough problems to keep me from carrying.

 

[somethingshiny]

quick question:

I assume we all want this thread to continue to help us with managing PCOS and support each other. Do we want the thread to be moved to the new Healthy Lifestyles forum??

 

[CrownJewel]

Gypsy, I was skeptical too. 12 years of different dermatologists, different treatments, oral contraceptives...and nothing worked for my skin. I have terribly sensitive skin to begin with, so I just figured my skin overreacts to everything. Then this new guy prescribed the spironolactone, and voila! My skin is not perfectly clear yet...but it is really on it''s way. I could write pages on how much better my hair and skin feel.

I wish you luck Gypsy. Keep me updated.

There''s a book called Patient''s Guide to PCOS by Dr. Walter Futterweit. He''s an endocrinologist that my dermatologist referred me to. It seems like it''s very popular among PCOS patients. I read a little excerpt on Amazon and Barnes and Noble, and it seems very easy to understand.

SS, where is the Healthy Lifestyles thread? I can''t find it.

 

[CrownJewel]

Lauralu, how comprehensive was the blood test? Did it include sex hormones? I can''t say for sure, but I don''t remember in my whole life, a doctor ever ordering a check on my hormone levels in a blood test, until this year by my ob/gyn and dermatologist.

I''ve had the symptoms for the past 16 years, but didn''t find out until I had a sonogram and blood test for sex hormones. Just double check with the doctor that they actually tested for testosterone. If your daughter has excess facial hair and doesn''t have high testerone levels, then I would guess (although I''m no professional) there must be some other problem in the picture. How old is she?

 

[somethingshiny]

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