Has anyone had a good or neutral reaction to going off the pill???

mac · 05-28-2007, 03:53 AM

I already posted this on the hair loss section, but I thought it would be appropriate on this section as well. Sorry to those who are reading it twice.

Hi, I'm new to this forum. Technically, I haven't been diagnosed with PCOS because I think I may have developed it while on the pill (still on it.) So, no dr. will diagnose me since they don't know if I'd miss my periods or not. Very frustrating. I've experienced hair loss for the past several years on the pill and gained about 25 pounds. My younger sister has PCOS which is why I think that I may also have it. Also, Type II diabetes runs on both sides of my family.

I'm desperate to get off the pill after 6 years, but I'm terrified of going off the pill and making my hair loss even worse than it already is. After reading many posts, it seems like many if not most people go ON the pill to help symptoms. I'm thinking of going off of it. I have elevated liver enzymes, IBS, developed many, many food allergies, and the list goes on since I"ve been on the pill. I think it might be the culprit to all my problems including my hair loss, but of course as hair loss goes, stopping the culprit may not eliminate the symptoms and may also make them worse.

Has anyone had any success with their hair loss when going off the pill? Has anyone had at least a neutral reaction? At this point, no change is better than a worse change.

Thanks in advance!!

tariana · 05-28-2007, 11:45 AM

I become a horrible, hideous monster when off the pill. Hair sprouts, pimples pop out, I have HORRIBLE mood swings, and I generally feel terrible. I feel ugly and icky, both emotionally and physically. I definitely wouldn't recommend going off the pill, but there are lots of women here who aren't on it that do fine. I guess it's just me.

Mandi_C · 05-28-2007, 07:35 PM

the only thing that i could think of to offer as advice is to look into the herbal and natural section. They may have some advice for something that you could be taking that's more natural that may take away the symptoms if you really want off b/c....i personally haven't read that thread a lot so i honestly don't know if anyone can help though...so i make no promises, but it's just a thought.

AprilA7 · 05-28-2007, 10:07 PM

While my cycles were regular on the pill, I had terrible mood swings. They subsided some when I went off. And my cycles were fine for several months. In fact it took six months before they started getting longer with each cycle.

But as I understand it (I'm still new to this, but it's what my doctor told me) PCOS is something you're born with. The symptoms can worsen and get better, but it's not something you get later on in life. At the same time, some women have it, but have no actual cysts and have always had very regular cycles. While others may have cysts or practically no normal cycles, or really much of a cycle at all. I guess that's one of the reasons so many women don't realize they have it. There's so much variation in the cases.

Best of luck! If you do go off the pill and things get worse, at least you know there are several different treatments out there, including going back on bcp.

KatCarney · 05-29-2007, 01:04 AM

Quote:

Originally Posted by mac

...no dr. will diagnose me since they don't know if I'd miss my periods or not.

Run, don't walk, from any doctor who thinks that 'missed periods' are a must have for a pcos diagnosis.

There are many women who never miss a period who have pcos...

That said, I was 100% miserable on bcp's. When I finally came off of them, I dropped at least 5 pounds that same week.

Coming off of BCP's was one of the best things I ever did. (Certainly, it's not the right option for everyone, but for me it was best.)

mac · 05-29-2007, 04:59 PM

Thanks to everybody for their responses and support. And thanks KatCarney for replying about your good response to getting off the pill! I have horrible PMS on the pill, and I gained about ten pounds instantly (or at least it felt like that) when I went on the pill. But because of this horrid hair loss and my large potential for PCOS, I haven't gotten up the nerve to get off the pill for fear that it would get worse.

I totally chickened out on Sunday and started a new pill pack...my last I hope. But I'm glad at least somebody didn't have a horrid reaction to going off the pill.

Thanks again to everybody!

dani8477 · 05-31-2007, 11:11 PM

I'm in the same boat as you! I was diagnosed with PCOS in June '06 and started BCP (Yasmin) immediately. Of course my hair loss was the reason I went the doctor initially, and it was after that visit that she said PCOS. So the point being, I had hair loss just beginning then immediately went on BCP... of course the hair loss still continues but I have no idea what it would be like off of BCP. Who knows, maybe it would have been ten times worse if I never got on Yasmin, but I have no comparison ya know? I would really like to get off them though...all the risk factors just don't seem worth it! Besides my periods were pretty normal before BCP...I had a period about every 5-6 weeks. I guess I am just staying on because I'm hoping it will help with the hormone imbalances. I would love to go off of them but like you, I am scared to death that the hair loss would get worse. I always hear stories about dreaded sheds coming off BCP. =(

KatCarney · 05-31-2007, 11:19 PM

Quote:

Originally Posted by dani8477

I would love to go off of them but like you, I am scared to death that the hair loss would get worse.

I went off of BCP's and started Flutamide (aka eulexin). It was the most effective med I've taken for controlling androgens (which affect hair loss and growth.)

It's not an Rx for everyone, but for me it was wonderful. Othe cysters have had good success on it.

Keilygal · 06-03-2007, 12:36 PM

Hi there,
I was on BCP for 15 or so yrs. with gradual loss over the past six or so, with NO visible regrowth during that time. I had a baby last fall and didn't go back on the pill. Since then I've just been on Met and have been shampooing with Nizoral 2%. I DEFINITELY see lots of fine regrowth and a lot less shed (and this is not post-baby shed and growth - that already passed). I am convinced it's a combo of NOT being on the pill and the shampoo. I am trying my hardest never to go back on it - I think it contributed to the problem.
The only other thing I have is a bit of elevated liver enzymes - all other bloodwork and things are normal, no history of family hair loss, and I'm not overweight.
But the initial stopping of pill can definitely cause a shed. I can see how that's enough to scare anyone into staying on it.

Kittie · 06-06-2007, 09:23 AM

Quote:

Originally Posted by KatCarney

Run, don't walk, from any doctor who thinks that 'missed periods' are a must have for a pcos diagnosis.

There are many women who never miss a period who have pcos...

Just wanted to jump in and say that I'm one of those women, I had AF like clock work but was still diagnosed.

Good luck deciding what you want to do, remember if you change your mind you can always go back on them!

KatCarney · 06-06-2007, 10:21 AM

Quote:

Originally Posted by KatCarney

Run, don't walk, from any doctor who thinks that 'missed periods' are a must have for a pcos diagnosis.

And when you leave, give him the article in the link below, and tell him you're leaving to find a doctor who has read the research on diagnosing patients with PCOS who menstruate regularly.

Diagnosing PCOS in women who menstruate regularly

ibcnuldu · 06-06-2007, 04:20 PM

I went off Yasmin in March. My hair loss has not really gotten worse thank God, but I did see a little more hair growth. That's about it.

Jeanette · 06-10-2007, 02:46 AM

I have been on the New Zealand equivalent of Diane 35 for about 6 yrs and on a BCP for more than 10 yrs. When I was diagnosed I was still very young ie aged about 12. It was recommended that I take a spell off the pills after a few years, after an initial break through bleed, I think I managed a 3 month period off the pills, but my Dr decided that I should go back on.

I was in no way a classical cycle, I had period of 14 days with a week off and then back again. My cycles were very heavy and painful, after a night of constant bleeding having gone through more than 10 pads, I knew there was a problem!

Recently I have had concerns by my local clinic at being pushed off the med's simply because they are risky, so next time I go to the dr I plan to be referred back to the specialist I saw in the beginning to decide if it is still the best way for me.

I have had blood taken and ultrasounds. If you think you can manage 3 months off to clear the effects of the BCP on you body, which is recommended by some PCOS texts, then go for a hormone check and se if any abnormalities turn up.

Although there a only a few articles and some are a bit old, I found out some interesting info when searching http://www.pubmedcentral.nih.gov/

mac · 06-10-2007, 11:54 PM

Just wanted to thank everybody again for their responses! I don't know what I would do without them. In my efforts to not depress myself further, I've tried not to think about the pill and my hair loss. However, I lost my motivation to go off the pill in the process. I feel like this is a constant struggle I have. I get really motivated to go off the pill, but then I lose my motivation because I'm trying not to think about my hairloss!!

Although, I really can't forget that I have elevated liver enzymes which may be caused by Yaz. So, I guess, like Jeannette pointed out, I really should go off the pill to figure out what's really going on with my body. I don't know why, it just seems less scary to stay on the pill even though it may be contributing to my hair loss. It's just so hard to stop taking something you've been taking for six years! It's so hard to not feel like going off of it will make it worse. I really should've stopped last pill pack. I was so motivated then. I just chickened out at the very last second.

At any rate, thanks everybody!

Jeanette · 06-11-2007, 05:40 AM

I fully understand the scaryness of contemplating going off the pill, I am venturing into that territory myself again and after 10 yrs I'm scared of change when it has been a godsend and given me normality. That is why I want to see the specialist who confirmed my diagnosis, but I got scared & chickened out at my last dr's visit, will try again in 4 months when my pills run out!

Scared is normal, I hope the support of everyone here helps you to get to where you want to go