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Re: AHHHH! to BCP or not to BCP, to Spiro or not to Spiro, to Gluc or not to Gluc, to struggle or to give up- these are my questions

From: anonymous (anonymous@obgyn.net)
Wed, 22 May 2002 11:01:14 -0500 (CDT)


Hey Valerie

I'm mostly sorry this is all making you so batty. In a selfish way, though, I'm GLAD this is making you batty... because then *I* feel less alone in my battiness!!! :-)

As far as treating the PCOS with medication, though, I have pretty much arrived at a decision (metformin and nothing but metformin...) so I will discuss treatment option battiness here and share my thoughts on the matter. Keep reading... I've gotten more fond of commenting my way through a message rather than dumping it all out before excerpting.

At Wed, 22 May 2002, Valerie wrote: >
>AHHHHHHHHH! I can't take it anymore!!!! 12 years post diagnosis and I am
>still going nowhere fast and I am angry and I am crying and I am
>depressed and I am beyond explainable! Someone help me please! I AM SO
>FED UP I COULD SCREAM... I HAVE NO ONE WHO REALLY UNDERSTANDS WHAT IS
>HAPPENING TO ME... I AM SO DAMN TIRED OF ALL OF THIS... I WISH I COULD
>TRADE MY BODY IN UNDER THE LEMON LAW LIKE A CAR THAT GOES BAD
>PREMATURELY DUE TO MANUFACTURERS ERROR!!!!!
>

Don't we all... :-/

>OK, I was diagnosed 12 yrs ago and had no real "treatment" until mid
>March. Endo Rx'd Gluc, 1000mg per day... I struggled to get there...
>not there yet... I was at 375 with breakfast and 500 with dinner...
>lately my health seems to be in the toilet (more so than just the Gluc
>side effects)

You know, the more I read, the more I feel happy that Gluc. did hardly anything to me with regard to side effects. I had no problems at all with 1000mg and went up to 1500mg after just a week. I only seemed to have problems if I ate certain foods, and I quickly figured out what those foods were. Any chance you could play around with your diet more, try to see if you just happen to have certain problem foods you need to avoid? Do you tend to eat the same thing for breakfast every day? If toying with your diet doesn't work - really cut out those high glycemic carbs! pasta in particular does me in - have you tried lowering your gluc dose even more? 250 at break and dinner instead of 500 and 375? Maybe even 250 at breakfast, dinner, and lunch? Taking the pill halfway through the meal? (I don't quite understand WHY, but this seems to help) Taking the XR version which has less side effects due to its gradual release?

Just some ideas...

>I started getting kidney pains 3 weeks ago and they gave
>me antibiotics for a massive kidney infection... I still test positive
>for infection, but at least the kidney pain is down to a dull roar that
>I can suffer through.

Hmmm... Gluc. is cleared through the kidneys. If you have a kidney infection, I'm wondering if it's harder for your bod to clear the glucophage? This might be worth considering... if that's true and you still have the infection, taking the gluc. now might not be so wise. Just a shot in the dark, but a possibility...

BTW my sympathies on the kidney infection... I've had two land me in the hospital. They stink!!!!!!

>I spotted for the first time in ages at about the
>same time- got excited, thought it was a period- NOPE! Braved the OB-GYN
>for the first time in a long time and he tried to talk me into BCP- I
>did BCP's for 7 yrs and stopped 3 yrs ago because they are awful...

Do not let ANYONE talk you into BCPs. I do not see anything wrong with a woman making an informed choice to take BCPs, accepting and knowing ALL the pros and cons to doing so... but I see no good reason to be talked into taking them if you have reservations AND have had bad luck in the past. There are other ways to treat PCOS now. Only when those fail do I feel BCPs should be falled back on...

>he
>Rx'd Provera because I refused to even consider BCP's (been so sick,
>haven't been brave enough to start the Provera yet) Went to the Endo for

Well provera is a good option for some... as long as you induce or have a bleed every 3 months, I belive it reduces the risk of endometrial cancer... but I understand being afraid to add more side effects to the problems you're already having. Still, it's good to have the option of provera every three months rather than BCPs all the time...

>a follow-up, with 875 Gluc a day I have had little change in my
>insulin/glucose, my testosterone dropped a bit while my free
>testosterone almost doubled!!! (Which accounts for the new bald spot the
>size of half a dime and the fact that my lasered face now bears a dozen
>or so black hairs- the laser tech did tell me to keep my testosterone
>under control if I wanted permanent results... easier said than done
>ay!)

875mg really is a low dose. I'm not all that surprised that it hasn't done anything... If you really cannot tolerate a higher dose of Gluc, have you considered other insulin meds? I shy away from them because of their weight gain potential... but if the met doesn't pick up soon, I might have to bite the bullet and give actos a try... (Of course I have no idea if the met is working now or not... should get a period this week if it is, I seemed to have hit a 5 week cycle... but I'm under so much stress lately that i'm not at all surprised I'm running late. the question is, is it stress making me late, or lack of met working? hard to say...)

>My endo says she feels it is in my best interest to begin taking
>Yasmin BCP for a while to get my androgens back in line... if not
>Yasmin, then Spiro with condoms as my birth control method.

So here is my problem with Sprio... or should I say problems?

First, it really does work for the hair and acne problems. It really does. However, I know that I am going to want to TTC fairly soon - actually, at this point, in one year 4 months and 11 days - and I do not want to take Sprio for a given amount of time... see great improvements... then go off it and have it all come back. You cannot take spiro and TTC. The effects of spiro are disgustingly fleeting. I see no point in beginning spiro if I can't stick with it long term. Just as I am seeing great results, I'd have to stop! I'll just shave and pluck and revel in cold-weather clothing, thank you. Sounds like you could find yourself in a similar boat. What if you decide in 4 months that you want to ttc again?

Second, spiro has some very undesirable side effects for me. Inability to orgasm and oh happy fun constant bleeding. When this side effect first came on I was excited because I thought it was a period. Three weeks later, the novelty had worn off. Due to the bleeding effects of spiro, I would have to take BCPs while on spiro... and I never want to take BCPs again. I have had too many unpleasant experiences with them. This bleeding effect is common enough that a lot of women take BCPs with the spiro for that reason... so if you want to avoid BCPs, you should know that you might have to take them with spiro (Or else bleed all the time... take your pick.)

>Furthermore,
>she said my side effects of Gluc were really abnormally bad and that it
>is my decision how long I want to battle with Gluc, she said for as much
>as I am suffering I can respectably give up at any time and since I
>would be using some method of birth control then I could take something
>other than Gluc though I will need to stop when I get the nerve up to
>TTC again. I AM SO ANGRY WITH MY BODY RIGHT NOW! My husband and I have
>been TTC for 3 yrs and now I am not even serious about it anymore... my

In my mind, the nice thing about gluc and TTC is... well, you don't HAVE to be serious about it. If you get pregant, great. If not... well, at least you're not trying too hard. At least you don't have to worry about terotogenic effects... you don't need to go out of your way "preventing" pregnany that isn't likely to occur anyway... You can just sort of pretned you're a nomral healthy couple and have sex whenever or don't have sex if you don't feel like it. Of course, if the gluc is making you miserable, this isn't really important. It sounds like you definitely need a break from TTC and need to get your body in line... Whether or not you want BCPs and spiro to be part of this process is up to you.

>new approach is that I will get brave one day and do the whole 9 yards
>with the fertility drugs, but frankly I feel I can't now... my body is
>in awful shape... I get excrutiating daily headaches, I have had to
>drop my Gluc down to fluxuating between 375 and 750 per day because my
>stomach is in awful shape, my anus can bear little more of this, I am
>going bald fast, I have no real great friends around and DH is
>supportive but its just not enough to bear the pressure that is welling
>up inside me... a couple of months ago newborn babies made me sick with
>envy- now I get sick with envy if someone isn't pill popping all the day
>away... is it possible to be addicted to Immodium Advanced (the
>anti-gas kind?) because its the only thing that stops the cramping... I
>am petrified to give up the Gluc completely but I am petrified to stay
>on it... I have no choice but to lower my androgen level with something
>and the question is WHAT??? What won't make my system more screwy... I
>am so fatigued that I put in my work week scarcely able to concentrate
>even 75% of the time, I come home and veg out every evening and sleep my
>weekends away. I don't feel I have the brains for these decisions
>anymore! Yasmin is a BCP- does it truly have an anti-androgen component
>or am I just pumping a stupid BCP with all kinds of chemicals into my
>personal chemical disaster of a body to further screw me???
>

Yasmin really does have antiandrogen properties. It is made with a derivitive of spiro... so you could take yasmin instead of BCP + spiro. There actually are good reasons to take BCPs prior to ttc... the pill-induced hormonal normalicy can result in a few months of normal ovulation after you stop the pill. For the record, though, I NEVER have had this happen to me until I took both the pill and glucophage. When I quit BCPs in the past, I would go months and months with out a period. When I quit the pill on glucophge, I had a period 28 days later.

One thing to consider, though... if spiro results in birth defects... does yasmin? would you have to wait a while to concieve after quitting yasmin? you might then lose the ovulation-inducing normal hormone levels... I don't know.

>Yasmin or Spiro...or Saw Palmetto or???

I have no faith whatsoever in saw palmetto... but I believe some have had success with it...

>
>Gluc or Gluc+Actos or Gluc+something or Actos or???

If you can try another insulin med, go for it. What about low carb and exercise? I must say I personally am all about sensible diet, exercise, and medication... i know that I cannot stay on a low carb diet and I think going on and off it is probably worse than eating carbs all the time. If you can do low carb, try it. If you can do actos, try it. But with the possibility of TTC in the future, and your aversion to BCPs, I would personally avoid spiro. I can definitely see a year or two of BCPs plus an insulin med as being helpful in your situation... but only if you can find a BCP that you can tolerate. By no means do I feel you have to take BCPs. I just think you should know there are pros as well as cons.

Just do not feel that BCP alone is enough! The cause of PCOS needs to be addressed as well as the symptoms.

>
>I am sorry for the length of this, but I am at my wits end and I swear I
>am nearing nervous breakdown... I can't help but wonder WHY IS THIS ALL
>HAPPENING TO ME?!?!?!?!?! I am 22!!! I swear my quality of life is
>running in the negative numbers right now... and I almost wonder is I
>am imaging that it seems I felt alot better before I did any of this!!!
>I have like NO APPETITE until 4pm and cannot even force it or I puke...
>I puke pure bile like its a sport lately... I am crying and I cannot
>take anymore!!!
>
>--
>ValerieC

I feel I've probably only confusaed you more... but hopefully if nothing else, you'll realise you are not at all alone in your confusion here.

>

- jodi




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