Experiences with coming off the Pill

happierandstronger

Hi everyone,

I have struggled with weight issues most of my life and at 14 I was diagnosed with PCOS and Insulin Resistant as I wasn't having regular periods. At around the age of 16 my OB/GYN prescribed me with a low dosage pill (which I have never missed a day or taken a break from) as well as Metformin which I was to take 3 tablets a day. She also suggested I lose weight. The weight loss was a hard thing to do and she had been telling me for years I had to do it otherwise I would be diabetic by the time I was 25. From there I saw dieticians and took VLCD meal replacements and lost around 30 kgs but upon stopping those the weight went back up and I had gained 14kgs and was feeling like I was at my lowest point yet.

In October last year, when I was at this low point, it hit me and I decided to come on MFP. By March this year I had lost 10kgs and when I went to see my OB/GYN I was down 20kgs. At this appointment, she decided to reduce my Metformin to two tablets a day as I was probably around 40kgs lighter than when I first started seeing her. The other day I saw her again after I had lost another 8 to 9kgs. This time she told me to stop me to stop taking the pill to see how my body copes and also so I can get some blood work and an ultrasound done. She also prescribed me with some progestogen pills to use as a back up if things got really bad off the pill, however she said she didn't really want me to fill the prescription unless I gave her a call about it first.

Since stopping the pill a few days ago I have found that my appetite has increased to the point that all I want to do is eat, I am feeling tired for no reason, have had some bleeding and have gained almost 1.5kgs in the space of 3 days (I know it is not that much but in that space of time and for what I actually eat it isn't normal) and it looks like it is set to get worse.

I have found heaps of information about the side effects of going on the pill but nothing about what happens to your body when you come off it.

For those out there who have come off the pill, what have been your experiences and how long have the side effects lasted?

Thanks in advance for all your advice.

acupofcoffee

My experience with stopping the pill (I went back after two months) was acne, acne, acne and no period. I also take Spiro but no Metformin. I don't recall having any weight gain.

happierandstronger

Thanks for the reply acupofcoffee it's good to hear what others have experienced Thankfully I haven't gotten any acne - then again I never really had much of a problem with it before starting the pill. Fingers crossed it doesn't start up now!

CharRicho

I took my last pill in the first week of July, and I'm currently in my 4th cycle since then.

Before I went off the pill, I started seeing a naturopath as I was concerned about the potential side effects of my testosterone going up, and also because I'd never gotten my period with any regularity without being on the pill (like, maybe came once a year on it's own, just randomly).

The naturopath started me on a no-added sugar, low natural sugar, low(ish) carb, gluten free, high protein diet. She also started me on milk thistle - took this for about 3 months prior to coming off the pill, to be sure my liver was up to function, as with PCOS our livers have to do a lot of extra work to get the excess estrogen and testosterone out of our systems.

I'm not taking that anymore but I am taking Glucoplex (for blood sugar), Estro adapt (for estrogens), Tribulus (days 5-14, for ovulation), Vitex (general hormones and ovulation) and Progesterone cream (days 14-28 or post ovulation to period depending on cycle length, for low progesterone).

I am cycling regularly now, but so far no ovulation. But every month it seems like there are more and more signs and symptoms that it is trying to happen, so I'm cautiously optimistic that this is working.

The only side effect I've had so far since coming off the pill, is that the hair on my head is falling out
This is more than a little distressing, but I think (since I have no other symptoms of high testosterone - so far no increase in facial hair, no acne, no high sex drive, or any of the things I had before I knew I had PCOS and was not on the pill) that my genetics (bald men on both sides of my family) just make my hair especially sensitive to any increase in testosterone, even if very slight. I'm hoping it levels off soon, or if I'm able to get pregnant (the goal) it should stop. It's definitely something I will focus on stopping once I'm done having kids, but I can't take anything for it while TTC.

The other annoying thing that I have noticed is that my weight loss has stalled since coming off the pill. Luckily I lost 30 pounds before, and am fairly happy with where I am, being within 10-15 pounds of goal weight, depending on the day, so I'm trying to focus on fertility and not weight loss now. I don't know if it's related to coming off the pill, or because I've become a bit relaxed about the amount of food I eat (though not the content) - it's hard to be as committed to it when my focus is elsewhere and I'm feeling pretty good about how I look now.


So I don't really know what to tell you as far as how long the symptoms will last; you are on metformin so that should really help settle things down soon... the progesterone will help you cycle properly if that is an issue, or if you are TTC, definitely use it because low progesterone can cause miscarriages. But it will make you hungrier (only while actually taking it, not all month) so if you don't need it, maybe clarify with your doctor why she wants you to take it and if it's really necessary.

Not sure what you are doing with your diet, but at the VERY least, try to cut down (or cut out!) sugar. Sugar is the absolute biggest enemy for PCOS women, as far as hormones go and for weight loss as well (and will make you hungrier!). If you've already cut down or cut out sugar, then work on carbs, especially white carbs.

Good luck! Lots of peeps here in the same or similar positions so hopefully we can all help and encourage each other

(Sorry for the ridiculous long reply!)

residentangel

Since coming off the pill I have been 100 times more bloated, tired, moody etc and on top of that have gained just under a stone in weight. Ive been off it 3 months now. When my new cycle starts Im going back on it!

To make matters worse, my GP has tried to revoke my PCOS status, saying that she believes I dont have it (my last GP diagnosed it due to my testosterone being almost double the lab recommended normal range for a woman and a TVUSS showing multiple raised follicles consistant with someone with PCOS).
My most recent blood work had my testosterone within normal range by 0.01!!! and my LH was on its mimmum "normal value"
Now as I had been on the pill for 8 years and the blood test was taken barely 3 weeks after stopping the pill youd have thought the doctor would have agreed with the diagnosis but no.

All of the sypmtoms that were pretty well controlled whilst on the pill have come back, including the excessive hair growth (chest,chin etc) and then hair loss (head), acne etc

Im hoping that if I go back on the pill again my symptom control will be better but it is really getting me down. :sad:

happierandstronger

Thanks ladies for the advice and apologises for not replying sooner. Your advice has been very much appreciated and has helped me piece together what the hell my body is doing!

***Just an update***

It has been 3 weeks since I've come off the pill. The constant hunger and the bleeding has stopped so I'm just keeping an eye on my monthly cycle at the moment to see if it comes by itself. I have noticed on that the hair loss hasn't been as bad but I have had more pimple than I ever remember having! The facial hair growth still seems to be the same. Hopefully things have started to stabilise!

Bellasarah28

I've had just the opposite results coming off the pill. The last pill I was on (Reclipsen) did not work with me at all. I was incredibly hungry, moody, tired and felt "out of it" most of the time. As I don't have insurance at the moment, I let the RX run out. Since coming off I've lost 20 lbs and feel more in control. Granted this could be because the last pill I was on was not a "PCOS" pill (no insurance means no say from the clinic lol). My new ins. is kicking in soon and I'm planning to see an endo to figure out if I even need to take a pill. That's always been so confusing for me - whether the pill is necessary or not. Anyway, just thought I'd add to the other side of the coin. I do have to say though, that in the first two weeks off I had slight cramping on my right side. I thought it might have been a cyst, but then I started to think that maybe I was ovulating (miracle of miracles!) but still haven't gotten my period. I've been off since around Christmastime.

miranda_mom

^^^ I had a lot of PMS/period like symptoms when I went off the pill, right up until I got pregnant, which was a year and a half later. It was very frustrating - every month I would have ovulation and PMS symptoms and then a lot of times even pregnancy symptoms (second pregnancy so I was aware what it feels like). I would have the one-sided cramping too but then not get a period. The only thing I could think of was that maybe the early process of ovulation (IE the egg getting ready to break out of the ovary) had occurred but not the final result?

lmhbuss

I got pregnant. Instantly. It was like magic pregnancy inducing stuff. It was crazy. My daughter is 3 now and I haven't gone back on hormonal birth control. I've lost enough weight at this point that my body seems to be coping with it ok, although I am more moody around PMS time.

jmzz1

After reading all the opinions I have a question and it is can pcos people reduce weight without any medicines?

laleonadr

I have been off the pill (Monanessa) since last week AND I FEEL SO MUCH BETTER.

I sleep better, my energy is up, I feel full after I eat, I feel "normal," I do not feel like a giant balloon, etc etc

My mood is still stabilizing. I feel less depressed for sure. My cramps and such are the same as usual

I am crossing my fingers that my menstrual cycle is able to come on its own. So far only extreme weight loss, Metformin, or the pill have been able to bring it about. I'll see how it goes for 6 months....

skroeze87

My doctor took me off the pill in june because I want a baby. It sucks. I was constantly bloated, crave salt and sugar. I am 26 and having to get my moustache waxed off. I have permanent acne. I haven't had a period since, I have no cycle. The OB/GYN I see hasn't seen one this bad in a long time. The progesterone pills he gave me caused a blood clot, so I can't have them any more.

My hormones are so out of whack and I have suck bad insulin resistance. All because PCOS went untreated for almost 10 years, my last doctor didn't investigate my lack of periods until it was too late. I have never had a period without the pill, but have had several surgeries to remove cysts. Doctor figures I don't ovulate since I grow cyst almost monthly.

Things have gotten a lot better with my new diet. the low carb and low salt is really helping. Bloating is better and all the water is helping my skin. Not much that can be done for the facial hair growth. And I am losing weight with eating right. 17lbs since beginning of december. If I can get enough weight off my doctor has better hopes for me.

miranda_mom

Skroeze87, your story sounds almost exactly like mine. I went off the pill in December 2011, had one normal length cycle and then nothing for seven months. Also, my PCOS symptoms became terrible after going off the pill. What worked for me was Metformin. It still took me a long time to get pregnant (a year and a half but that includes the seven months when I wasn't even ovulating and I'm almost 10 years older than you too!). Good luck!