Success Stories!!!

tuscar · 05-28-2002, 02:40 PM

Hey everyone!

I know that everyone on this site has something to complain about---PCOS is HORRIBLE, after all. Though it's extremely encouraging to share these woes with each other, it can also be depressing.

I thought I'd try a post with a change of pace. What I'm interested in hearing are all of your success stories. How much hair has grown back on your head, how much body hair (and where) have you lost, what were your most sucessful meds/treatments and why, how much weight have you lost, etc.

We aren't all doomed--there is hope.

(I'm feeling very optimistic today)

Me? well, I JUST (like 2 weeks ago) started meds so no results yet...but I will post when I see something happening!!!

Pandora73 · 05-28-2002, 09:58 PM

OK I'll chime in

- good topic... I think it's important to examine our successes, especially with this disease! Need all the help we can get. Let's see...

* I've been using Vaniqa for facial hair for a month now and I'm seeing great results!

* I've been on Spiro for the body hair for about 8 months, and I am seeing some results there - could be a bit better though

* I've lost about 10 lbs.... not much (especially in light of how much I NEED to lose

) but I am LOSING and that's the key!

* I've been faithful about taking my meds, which can be a feat in itself sometimes

* Along the same lines, I've also been really good about taking care of my face - washing every night no matter how tired I am - and my skin is clear

* I'm drinking more water!!

OK, I'll stop now. :o I feel better already though! Oh, and I should mention that I "fell off the wagon" with my healthy eating and exercise last week, but I'm back on today! Just got off the treadmill and I'm feelin' good again! That's a good feeling - knowing you can screw up but not beat yourself up about it... just let it go and start again.

Hope to hear some more!!

LuciaC · 05-29-2002, 01:51 AM

I like this idea---

I have had regular cycles for almost a year and a half now-without meds---just through changing what I eat and making sure I keep moving my body.

Also--I think my left ovary might have ovulated twice in the last year---which is awesome-- twice is better than the none that I was used to

The hair on my head, which was getting dry and brittle and coming out alot a year and a half ago, is back to normal and shiny. (Been taking flax seed oil and evening primrose oil religiously all this time)

I feel like I am kinder to my body now, especially since when I don't pay attention to it, it lets me know!

and the jergens ns has been working on my legs, which makes swimsuit season all the more welcome this year-

Let's hear some more stories!

dove22 · 06-01-2002, 12:46 AM

I like this topic..It is very refreshing!

I just found out I had mild pcos and IR about 9 months ago. I imeediately went on Metformin and Spiro. The meds helped me loose 35 lbs so far, which was impossible even with 5 days of exercising before meds.

My skin is also not so oily, so therefore less acne. I virtually have no acne now..just seems to breakout on my neck now during cycles.

I also now get my cycles every 28-30 days when before it was every 36-50 days.. I just hope I can ovulate eventually..as I have not as of yet.

I also feel good and have lots fo energy!

Now to just find a solution for excess hair shedding. I am on Ultra nourishair right now, so hopefully it will help, I am crossing my fingers..as this is one of the symptoms that most bothers me, and can be very depressing at times. I am sure something is out there that can help!

Bobbie

nae · 06-02-2002, 10:57 AM

I have lost 40 pounds after years of trying... it's been off since 2000... just by changing my eating... a lifestyle change!!

I've been using soy lecithin and it helps me keep 28-30 day cycles plus I check my BBT and it shows ovulation, but I don't know how much progestrone I'm producing to hold a pregnancy.

I've never been this thin before and I've never had regular cycles w/o med. before so I'm so excited that my body is working as it should.

keep on with the success stories.....

Erin31CA · 06-03-2002, 04:48 AM

Wow...it saddens me that over 200 people have looked at this post and only 4 have responded. Does that mean there are not many successes out there? Well I will share my story.

I have had syptoms of PCOS since puberty. Although I was never overweight, I had the hairness and irregular periods from the time I was 12. I usually only had 3 or 4 cycles a year, which declined over the years until I was into my early 20's and then I had maybe 1 or 2 cycles a year. About 6 years ago everything went haywire and I stopped having my period all together, I gained a ton of weight in a very short time, the hair got worse, and I developed a bunch of skin tag, and skin problems. Over the course of that time I saw a bunch of doctors who all pretty much shrugged off my symptoms. Finally, just last year (at the age of 31!!) I read an article about PCOS in a magazine. I so totally identified with the article that I immediately knew that I had PCOS. I went back to the doctor and insisted that I be screened for PCOS. My doctor ran blood work, but refused to recognize that anything was abnormal (She even told me that my testosterone level of 98 was only "slightly" elevated). So, I insisted on being seen by an endocrinologist who diagnosed me with PCOS on my first visit. That was just in December of 2001.

So, I began to do research on PCOS. Although my doctor diagnosed me, she really didn't offer a whole lot of suggestions on what I could to to improve. So, on my own, I started an exercise program and I began to eat a low carb diet. I worked out at least 5 times a week (30 minutes of aerobics and 30 minutes of weight lifting). I eliminated all refined sugars, white flour, pasta, rice, and potatoes.

I began to lose weight....something that I had been unable to do for that previous 6 years or so. My body shape changed as well, as I gained more tone and defintion from working out so much. And my low carb diet really helped me to feel better. Gone were the shakes and fuzzy head that I used to get all the time. And I had so much more energy. After about three months of that, I had my period without the help of Provera. I hadn't had it in years without Provera, so I was surprised. Then, the next month I had another one....and I was really surprised. Now I have had my period four months in a row....something that I have never had in my life. I feel so much better too.

I have gone from 265 lbs to 188 lbs. I intend to lose another 30-40 lbs if I can. My cycles, while still long (45ish days), are occurring on their own with no help from BCP's or Provera. My testosterone which was at 98 is now down to 59.

I have started laser treatments to get rid of some of the excess hair and have had great results with that so far.....

The only issue that still seems to be not improving is my hair loss on my head....but I am working on that.

Overall, though....I believe I have been relatively successful in getting a lot of my problems under control. In all, I feel a lot healthier than I did at this time last year. And I haven't been at this for very long either. I self-diagnosed myself in October (01) and was officially dx'd in December...so it has only been 8ish months. I plan to continue improving my health by being diligent and continuing my research. I believe my health is in my own hands, and not the hands of my doctors.....

Serena · 06-03-2002, 07:33 AM

After three years of treatments for my infertility, I fell pregnant with my first son

After two cycles of treatments, I fell pregnant with my twin sons

I'd had 10 years of electrolysis, with no improvement (nothing else available then) After 2-3 months on aldactone, I saw some improvement, after a year it was really great! I've been on maintenance ever since (12 years all up) and only have to wax my upper lip once every 2-3 months, shave my legs even less.

With the Aldactone, my oily skin and hair are both normal.

I'd only ever been able to lose weight with prescription tablets I now know were amphetamines (they did that 2o plus years ago) I now do control carbing and have (albeit slowly) lost 27 pounds, none in the last few months, but have dropped 3-4 dress sizes all up. 2 sizes have been without weight loss!

bandanna · 06-25-2002, 07:42 PM

hi all,

i like this forum....

i am thankful that i found this site - i was diagnosed in april and my excess hair growth is really bothering me... i have it all over.

but i'm thankful that i am on medication now. i am thankful that i have found this site for info on hair removal method - in particular, laser which i am seriously considering once i have my hormones under control.

question: for those of you who are taking spiro - how many mgs are you taking?

thanks,
bandanna

Moongirl · 06-26-2002, 03:43 AM

Hi bandanna!

I think it is a personal issue, when it comes to how many mg will work for you. It takes up to a year to determine your results on your current mg. I was on 100 mg for a year, with NO results!

So my Endo upped me to 200 mg a day. (100 mg in AM & 100 mg in PM) It is too soon for me to know (2 months) if this dosage is working, but I really hope so. I have all terminal, coarse, and as luck would have it, black hair on my chin, neck. and sideburns....I swear, I could win a beard growing contest hands down! LOL Not to mention about the body hair....I would maybe give yourself 6 months and then talk to your doctor, if you do not notice any results. Sorry I couldn't be of more help!

Take Care! ~Christine~

yistersister · 06-26-2002, 12:39 PM

This is great to post what we feel successful about. I have been battling this "syndrome" for 7 years dx and all my life undx. I think my biggest success is that I have learned more about my body. There is power in knowledge. When my doctors ended up being morons and making my hormonal imbalance worse, I took maters into my own hands and am better for it. I know more about my body than I ever thought possible and I feel like I am in control now and taming this wild beast. After researching herbs for about a year, I finally started taking them and am very pleased with my initial response. For the first time in 10+ years, I actually had a cycle on my own. No provera/prometrium. I am VERY excited about that. It means that my body is starting to wake up and do what it is supposed to do!! I haven't been as religious with my eating habits but like the herbs, slow to start while I am soaking in what would be best for my body. I told my DH last night while I don't wish this PCO on ANYONE even my enemies, the positive is I have taken responsibility for my body and knowledge of how it works. I am making Lemonade outta the lemons life threw me!!

Take care and raise your heads high.

tuscar · 07-11-2002, 10:11 AM

Well it's been over a month now since I started this discussion, and and I finally have a success story to tell!!
It's only been about 2 months since I started taking meds (spiro, vaniqa and rogaine) and even though I still haven't gotten an official dx, (I have an appointment with an endo for the first time next week) I'm already seeing improvement. I definetley have more hair growth on my scalp. It's still much, much thinner than it used to be, but my widening part has closed up and I can see new little hairs growing all the time in places where they haven't been in a while. Yes if my hair isn't completely flat against my head and I'm in the sunlight, you can still see my scalp in front.....but I always wear my hair natural (flat against my head) anyway so no one but me notices anymore. I'M SO RELIEVED!!!!! That's what was bothering me the most--the hair loss. I used to cry all the time to myself about it. Now even though it's thin, at least it FINALLY looks more "normal." ALso, the spiro/vaniqua combo is really working for me as well. I used to have to pluck hairs EVERYWHERE twice a day. Now I only do so once every 2 or 3 days. I've even lost a few pounds. IT'S A MERACLE!!! The only complaint is the expense of my maintenace, but it's SO WORTH IT!!! I'd rather be in debt than be bald with ape hair any day. I have to say, if I had left it all up to the doctors and not done research on my own, I never would have taken the initiative to demand the perscriptions I needed or the nerve the buy the rogaine. I've learned a lot during this ordeal about how to care for myself. I am a little excited to see a real endo soon, though. It's always nice to have an understanding doctor.

LuciaC · 07-14-2002, 01:36 AM

Tuscar,

Congratulations!! Glad that you are seeing some results and advocating for yourself more. It is awesome that you are also using this to understand more about yourself and what you need for your own health and well-being. I wanted to mention one thing: Have you ever tried Nioxin shampoo and conditioner for your hair? My mother and I both use it and it has thickened up both our heads of hair.
Take care and keep us updated,
Luci

cndysue36 · 08-06-2002, 07:27 PM

can you take rogain if you are going to try to start to conceive
with fertility drugs? If not, what are my other options because my hair is seriously getting way to thin,. i've always had a lot
of hair and the last year or so it's been getting way worse.
any suggestions?

Pamlyn · 08-07-2002, 10:16 AM

This is a great thread! I have had my dx for almost 12 yrs. or so. Here are some of the successes I've had:

*I have learned to ask questions of my doctors, and not leave my health completely in their hands. I do alot of research like many of you have mentioned.

*I have been able to lose 26 pounds this year by eating less and more healthy. I also exercise 4~6 days a week, generally for 30 min. I also drink around 90~100 oz. of water a day.

*I believe I am seeing results with the Spironolactone. It's very subtle so far, but I just upped my doseage to 200 mg/day so we'll see what happens down the road.

I have recently started taking Ultra Nourishair so we will see if that helps with hair loss on my head. My dream is to get off the b.c. pills and have regular cycles on my own. Some of the posts in this thread give me hope that it just might work! If I decide to do this, I'll definitely let you all know the results.

Pam

Kate H · 08-08-2002, 07:02 PM

Success...well, let's see...

*I was successfully diagnosed! (Hey, you got to start somewhere.

)

*I have a terrific doctor who has my best intrests at heart.

*My acne is gone, gone gone!

*I have lost 40 pounds, and am hoping for another twenty.

*My facial hair, while not gone, is at least thinner.

*I eat better than I ever have in my life, and have way more energy.

Yup, I guess I've been fairly successful in treating the disease.

Here's wishing well to my fellow Cysters that they may see success as well!