I’ve been diagnosed with PCOS.
I have the hirutism, the acne, the obesity, the male pattern baldness… Is there any hope that these sypmtoms will be reversed with medication? Have you been diagnosed? What’s your story? What can I expect?
A very good friend of mine was diagnosed with PCOS quite some time ago. She recently became pregnant. I would say there’s hope 
Yay!
(BTW, I don’t want to have children, I just wanna stop looking like a hag!)
The main thing is to lose the weight (if you’re one of the majority of PCOS sufferers who is obese). Hair problems have to be dealt with separately, but the rest of it will probably go away once the weight is gone and your insulin levels have settled down.
http://www.soulcysters.net/ is a fantastic resource with a lot of reading and many supportive women who are dealing with exactly what you are.
I have it, though the only symptoms I have is the not getting my period part and being fat.
Birth control helped with this. Well not the being fat part, but hey. I don’t seem to have a problem with having this until, I guess, when we decide to have some kids.
What sort of medication are you on?
I was diagnosed with PCOS about three months ago, and it hasn’t been terrible so far. My doctor has me on birth control and Metformin/Glucophage. So far, it’s worked pretty well for making menstruation more regular for me, but it’s different for every woman. Were you diagnosed just with PCOS, or is it PCOS and Insulin Resistance? (Mine’s the second ever-so-fun one, which means a life of low-carb diets and stuff…I want a potato!)
My only symptoms, however, are the obesity, infrequent menstruation, and very mild problems with hair in strange places. So far, I’ve lost about 20 pounds (which is probably aided by the Metformin), but haven’t noticed any change in hair growth (however, I’m not really concerned about this and haven’t really looked into remedies; any irregular hair growth is in easily concealable places for me).
I also second phouka’s site suggestion, with the note that if you go near the message board, they sure love enormous, cutesy sig lines. 
May I be slightly nosey and ask this – when you say hair in “strange” places, do you mean facial hair? Heavier than typical facial hair? Heavier body hair than most women have? I wonder if this is what my sister-in-law is dealing with. She’s reticent to see her doctor because of her weight gain; her doctor is the condescending lecturing type. Hmm.
In my case, it’s just on parts of the stomach (and more than usual on the toes, oddly enough). There can be some facial hair associated with PCOS from what I’ve heard though, but that might have to be investigated more.
A friend of mine has PCOS and she is on Glucophage, which she says has helped her quite a bit. I have some symptoms of it myself but had not been diagnosed with it as of now. Haven’t been to the doctor lately, and I seem to be getting worse. My periods have gone rather wacky, and I’m shedding like a cat. Off to the doc as soon as possible.
TeaElle , I would urge my SiL to try out a new doc. If he/she is condescending to the point that your SiL is reluctant to visit and share her problems/concerns with him/her then the doc is pretty much useless. There are too many good ones out there for her to settle with that kind of treatment.
Regarding the OP: My daughter’s friend probably had PCOS for years (all the common symptoms) and was not diagnosed until her mid 20s when she developed uterine cancer. The PCOS was diagnosed, she had a hysterectomy (retained her ovaries) and is now on treatment with an excellent prognosis. Sorry I do not know all the details of her treatment but I do know that she looks and feels fantastic. The hirutism, obesity and skin problems are all in check.
She was passed off by docs earlier as just not having willpower, etc. Once she got treatment though it was easier to comply. So, I think the moral of her story is if you think you may have PCOS be persistent with your doc. You may need a vaginal ultrasound and hormone levels to get a diagnosis. Get a second opinion if need be…and don’t put up with a condescending, lecturing doc. :mad:
I was diagnosed with PCOS in 2001. I have (or had) the obesity, acne, hirutism, and the fertility problems. The one thing that I found that has been very helpful is a low-carb diet. Insulin resistance and PCOS basically go hand-in-hand (and it’s a chicken vs. the egg debate on whether it’s the PCOS that causes the resistance or vice-versa), and I’ve found that being on a low-carb diet has helped tremendously. Not only did I lose weight (40 pounds), but my menstrual cycle became almost normal–going from a period once every 4-6 months to every 4-6 weeks.
My acne did clear up some after a few months on the diet, too. The hirutism is still a problem–I have heavy hair growth on my arms, plus some male-pattern hair growth on my face. Before I was laid off, I was going through laser hair removal sessions, which definitely helped, although I need several more before it’s all gone. While I’m poor, I just get my face waxed about every 3 weeks to keep me looking like a circus freak.
As for the infertility problems, after being on the diet for over 8 months, I was finally able to conceive (I’m the one that Ginger mentioned ). So, I’m off the diet for now, but still watching my sugar intake. I’ll be very susceptible to developing gestational diabetes, so I still have to watch everything I put in my mouth.
I have not been on any medication, and have tried to avoid that route by diet and exercise. Before I was diagnosed, I was often put on birth control pills to regulate my periods, which caused nasty mood swings for me.
This book helped me tremendously to understand what was going on with my body: http://www.amazon.com/exec/obidos/ASIN/0944934250/qid=1099764683/sr=2-2/ref=pd_ka_b_2_2/103-7816487-9696620
So, yes. There is hope.
I’m not on any meds right now as I am back to no insurance, and the finances are razor thin! (Dang. That makes me think of that stupid Deli Selects commercial… )
I’ve been to the Soul Cysters site and am hoping that diet and some of the herbal remedies recommended would work. If not, it’s off to meds.
You know, I stopped having my period in 1999/2000 and mentioned it to my doc. She said that there was nothing to worry about, that I didn’t “have to have” my periods. :eek: And I believed her. (And there I was at 199 lbs, with acne and a moustache!!) Makes me pretty tee’d off now. Even my gyn here didn’t mention it until I mentioned it first, and even then I had to specifically ask for the blood work (although I didn’t do the blood sugar test, and she didn’t ask). You would think since PCOS can lead to diabetes (right?) that gyn’s and doc’s treating women would be more aware of it.
And that leads me to my next question, since I’ve likely had this since for many years now, unchecked, have I done any permanent damage to my body?
Sadly, there are quite a few doctors that are ignorant about PCOS, and I do believe that as the obesity rates in America rise, that hopefully more will understand the consequences of PCOS on women’s health. It’s one of the top reasons for infertility in American women, and it is often a precursor to Type II Diabetes and Cardiovascular Disease. Amenorrhea is also linked as to being a risk for uterine cancer.
If you are a member of livejournal, an excellent community to watch is the PCOS Journal (http://www.livejournal.com/community/pcos_journal/). The members link to all kinds of articles about PCOS, and what new medical research has turned up.
I can’t tell you if there’s permanent damage or not–the medical research out there isn’t even sure about that right now. There are obvious health risks, but changes in diet and activity level do help quite a bit.
Oh, and I had to come back and reply to this. I had several doctors over the course of about 6 years tell me that my not having regular periods was “nothing to worry about, but here, we’ll give you birth control pills if it bothers you that much.” No tests were ever given, no guesses given to the source of the problem. It pisses me off, too. Healthy women menstruate regularly, and the absence of a regular cycle should be a huge clue to a problem.
You know how I got diagnosed with PCOS? It wasn’t until I had been doubled over in pain for two days that my doctor sent me to an ob/gyn who was familiar with PCOS who took an ultrasound that concluded I had a huge ovarian cyst rupture.
I’ve said it before and I’ll say it again…Dianette. It’s also known as Diane 35 and Diane 35 ED.
It’s birth control, with 35mcg oestrogen plus a progesterone-like anti-androgen (Cyproterone acetate) instead of the normal progesterones in other pills. It reduces acne and hirsuitism, and works like a normal birth control pill in every other way.
I don’t have PCOS, I take it for birth control (because I get really bad side effects from the progesterones in other pills) and I can testify that it clears up acne incredibly well. I have a friend with PCOS who found that it helped her a lot too.
If you have no problems taking a contraceptive pill, this would be the most useful one for you.
I’m not 100% sure that it’s licensed in the USA, but it does exactly what it says on the tin, and if your doc suggest birth control or Cyproterone acetate on its own, Dianette is the all in one combo to go for.
Good luck, I hope you can find something that works for you.
My problem with this (and any other form of birth control prescription used for PCOS) is that it only helps alleviate symptoms, but doesn’t do a thing to the root cause. It doesn’t help in any way the insulin resistance which is the truly destructive part of the syndrome.
Let’s see, symptoms I have:
- irregular periods (though I’ve been on the Pill since I was 19, and I’m almost 33)
- central obesity
- hirsuitism (I shave my neck and chin every morning. I look forward to when I can afford laser hair treatment)
- hypo/hyperglycemia
- acanthosis nigricans
- depression (linked to PCOS, but not necessarily caused by it)
Meds I’m on include:
- Yazmin BCP (I love it)
- Prozac (2nd lowest possible dosage, and it does the trick)
- Metformin (500 mg currently, though I will ramp up to 1000)
- Toprol XL (for an unrelated benign heart arrythmia, it has the positive side effect of lowering my blood pressure)
The only time in my life I have ever lost weight and seen symptoms lessen or disappear was when I quit drinking sodas and started exercising hand an hour a day. When I stopped exercising regularly, all the weight came back, plus more, plus the symptoms. sigh
Hi
I was diagnosed with PCOS and IR about 5 years ago. I tried Glucophage and it worked for a bit and then I started throwing up everytime I took it. Same with the Metformin. sigh
I’ve been working very hard on the Weight Watchers program, exercising and watching my simple carbohydrates (but eating the good for you complex ones!) This has helped quite a bit, however I still have the feeling sometimes of beating my head against a brick wall.
A great book I found is PCOS: The Hidden Epidemic by Samuel S. Thatcher M.D. Ph.D. You may also get some great info out of It’s My Ovaries, Stupid! by Elizabeth Lee Vliet or What to do When the Doctor Says it’s PCOS by Milton Hammerly and Cheryl Kimball. All of these books helped me as well as the soulcysters site.
Hope this helps and feel free to email me (I think my email is in my profile) anytime if you need someone to chat with!
Cats~