Laying off the pill for awhile...conducting research

gwenlexky · 08-20-2004, 04:51 AM

Does anyone remember the thread on here about talking about bcp actually increasing insulin secretion therefore causing insulin resistance and that they only mask some of the symptoms? I found it quite interesting. So, a couple of weeks ago or so, I was looking at glamour or cosmo or some other magazine of high academic quality (LOL). Well, you know how they always have those advertisements for various bcp's and on the back is the summarized complete presribing information. Well, I got to reading them and there it was on the prescribing information in plain english. I have been taking ortho tricyclen lo since Feb 04.

I am going to lay off the bcp's for awhile and see what happens. I have been off them for about 2 weeks now. Has anyone else done this and if so what was the result? I am starting spiro tomorrow and am going to get back on my met. I got really sick awhile back and was not eating so I did not take it.

Ok...so give me some feedback ladies.

gwen

MyJourney · 08-20-2004, 06:16 PM

Personally I went off the pill for TTC. I have since stopped TTC, but will never ever go back on the pill. I do not mean to flame, it is just a personal belief.

BUT, I must warn you that all those symptoms that the pill has masked may come back to bite you in the ....
Going off the pill really made me deal with PCOS on a day to day basis. You have to watch what you eat, stress, excercise. Not forget to take the bunch of other pills you use to combat the symptoms etc.

gwenlexky · 08-20-2004, 08:41 PM

Well, I really would not call that a flame. Just a statement.

Yes, I know that the symptoms that it masked will most likely come back. Not real sure what symptoms it mask anyway. Does anyone else know? I know that when I took the bcp that I could not usually tell when I had cysts and that it can help with acne. Funny though, I had a bad breakout while taking ortho tricyclen recently. I am talking about a cystic type breakout.However, I have been doing extensive research on acne and the root cause is an overproduction of male hormones (testosterone). So, I am thinking that spiro may be of a great help for me in this area.

Really, I think that md's feel pressure to prescribe meds from pharmaceutical companies. There are advantages for them for doing so.

Would like to hear from more of you who have any experiences to share.

gwen

sharone · 08-20-2004, 11:10 PM

Gwen~

I was on the pill for 15 months and then I went off because of insurance reasons. One of my symptoms for having PCOS has always been frontal hairline hair loss. When I went off the pill for about 3 months, I shed like CRAZY....it literally poured out of my head. I cried and cried and cried about it. I thought I was going to go bald. I went to a doctor and they put me back on spiro and bcp. Now I've been back on BCP for 5 months and my hair isn't shedding as bad anymore but my frontal hair line hasn't really come back to where it used to be.

So it's true...when you go off the BCP expect whatever your worst symptom was to get even more worse!

Honestly, I don't want to be on BCPs forever. But if it can keep me from crying every night because of the clumps of hair that came out as I showered and brushed my hair, then I will take this until they find a drug for PCOS hair loss.

Good luck!

MyJourney · 08-21-2004, 05:44 PM

I my case the symptoms that appeared were:

no AF - I was very regular before BCPs, but I think that PCOS started relatively late for me, while I was on the pill.
Body Hair - always was a problem, I think it go worse after I went off the pill.

It was and still is a challange, but it is possible to get a handle on the symptoms without BCPs. It takes time, dedication and patience.

Sharone - I do not mean to offend you by giving my opinion, and I totally respect your decision.

Gwen - I neglected to welcome you aboard the 1st post. So, welcome to SC.

Oshrat

crystal307 · 09-03-2004, 02:26 PM

Hi, there. I read your comment, gwen, about the back of the BCP ad. you're right, it does explain very clearly that insulin resistance may be caused by the pill and will worsen IR in women who already have it.

As I look back on the past 10 years since i have been going on and off the pill, i realize that everytime i went off the pill, my hairiness has gotten worse and so have my cycles. in addition to that, my body reacted so weird while on it: deep depression and moodiness, gained weight very quickly (6 lbs), sleeping problems.

Now, I am convinced that the pill messed me up more than i was before i started it.

I believe very strongly that the pill shouldn't be taken lightly by PCOSers. Don't let those docs push you into taking it w/o doing your own research! Be sure to do your research!

With Love,
Crystal

Roses · 09-03-2004, 08:37 PM

I have been off the pill since Jan...
I believe that if I had never gone on the pill, that maybe my PCOS either wouldn't be as bad, or would have developed. I think when I initially went on it and had a weight gain, the 'triggered' my PCOS. Might be a big call to make, but its what my 'womens intuition' tells me.
I have spent the last 8 yrs going on & off the pill - this is the longest I have been off it and I don't think i will go back on it...its hard trying to stick with it & all the yucky symptoms that go with it!

good luck

gwenlexky · 09-06-2004, 04:02 AM

Roses,

That is interesting and I can relate. Funny how none of these symptoms came about until after I stopped taking the pill.That was about 5/6 years ago. Some would say it was masking it, but my women's intuition says something else. Call me crazy!

gwen

Scyg · 09-13-2004, 01:58 AM

Just a note- if you go off bcp and start taking spiro, be careful about getting pregnant. From my personal research, I've heard spiro can cause bad effects to male babies. So be careful.

Also, on the other notes, when I took a break from bcps the facial hair got a lot worse and I could feel my cysts when the dh and I got intimate.

Now, I'm back on bcp, but this time instead of OrthoTricyclen, the dr. put me on Yasmin. I'm not sure why.

bloo · 09-13-2004, 09:13 AM

when i told my gyn, i wanted to get off the pill for danger of ir she said she had never heard of such an effect. well, she supports my experiments with natural treatments (see my signature) and letÂ´s see what happens. so far i can live with the hair loss and acne, it is treatable and bearable, but this has been cycle nr. 2, letÂ´s see how it will improve or worsen with the progesterone treatment along with the herbs.

my blood work is due at september 21 when iÂ´ll have my first appointment with an endo. so after 6-7 monts of treatment i will have the hormone levels checked back and see if it will be within a normal range.

about yasmin:
it is a rather young bcp and seems to be well adopted. i liked it a lot when i took it (as soon as it was on the market some 4 years ago, i think) and wouldnÂ´t mind going back on it.

Shannon816 · 09-15-2004, 03:11 AM

Scyg- My last gyno told me Ortho TriCyclen is about the worst thint a woman with PCOS can take. The "tri" means the hormones being released in several spurts during the day, making your hormones go up and down all through the day. Yasmin is a "mono" bcp, which means the supply of hormones stay steady all day, which is supposed to make you feel better.

As for me, I have had problems since I was 9, but no doctor would take it seriously until I was 17. I've been on and off some kind of bcp since then, frankly because they still refused to figure out why I was having problems. No bcp (including Ortho tricylcen: the end all, be all, cure all doctors believe it is) ever really helped, and when I got off of ortho the last time, my symptoms went WILD. Massive weight gain (almost 100 pounds in 2 yrs), thinning hair on my head, hair where it shouldn't be and a lack of it where it should, and my poor family can tell you stories about my mood swings.

Finally, a doctor finally listened and agreed that I had PCOS and I didn't have to argue that I wasn't taking ortho....again. However, I developed bad side effects she didn't want to address, so currently I'm not taking any bcps. I started using Estroven, which is at least making me have a period when I should, even though the weight and hair issues are getting out of control again.

crystal307 · 09-15-2004, 01:53 PM

Shannon,

You might consider looking into taking a drug called metformin. It may help get your hormones back in order. do a search and/or look on the metformin board for more info.

Best,
Crystal

Shannon816 · 09-16-2004, 02:21 PM

Thanks for the suggestion, Crystal. Actually, I talked to my primary doctor about taking it the last time I saw her, but in the end, both of us agreed it wasn't a great choice either. According to her, she gives it to her patients who are trying for a baby, and she didn't think it would fix a lot of the problems I was having. More importantly, I developed "dumping" a few years ago after gallbladder surgery. If you are unaware of what that is, your food basically runs right through and you have the runs all day long. That's finally not an issue anymore, and I can't go through that again. Since a lot of people get sick on Met, she said she wouldn't even put me on it after she found out about the dumping.

So, I'm back to square one. I did get some advice on doctors in my area, and will be making an appointment soon. Hopefully, I will finally get a better idea of what to do.

Again, thanks for trying to help.

crystal307 · 09-16-2004, 02:25 PM

You are quite welcome!

I really do hope that you find a solution to this. Have you thought about going on spironolactone. It has REALLY helped with my hair issues. I wish I had found both of these drugs long ago.

My PCOS problems have gotten worse as the years have gone by & this has helped tremendously.

fitness_chick · 09-29-2004, 11:50 PM

Well, I was on Demulen for eight years to regulate my periods and after I went off it my body went haywire. But sometimes when I was on it, I would have other symtpoms return too - acne (before accutane) and lose my periods. I would go off it for a month, restart, and then it seemed to be ok again. Not sure why.

Finally I went off it after losing AF again, but then gained a bunch of weight, etc. I tried on and off to go on it with mixed results, but then after begin dx'd with PCOS last March and starting Metformin, which didn't seem to do much, I went back on the Demulen in May.

I lost my periods again in June with bad fatigue. Also, I am not hairy to begin with, but what irregular hair I had got worse, which had not happened before (don't know if it was because of the combo of Met and Demulen changing things - previously had just been on the Demulen).

Well I changed doctors and they found out in August that I am hypothyroid and after a month of taking medication for that, AF returned. Due to that, I am going off the BCP - I don't want to take anymore medications than I have to. But if the severe PMS returns, bloating, etc, I have a prescription for Yasmin waiting. But I am going to try to go it this month and see what happens. So far, I am more tired, but I don't know if that's the thyroid medication still adjusting or what. It's all so confusing!!!

-Amie