I want to stop the pill...bad idea? - Polycystic Ovary Syndrome (PCOS) Message Board

el_9_el · 02-20-2008, 08:36 PM

Hi there,

This is my background:

Always had irregular periods (3-6 weeks between them). At 20 I went through a stressful time and my period stopped (5-6 months) and I got severe acne. I'm not at all overweight and doctors used this to discount the possibility of PCOS for a while. My bloodwork showed very low androgen binding hormone and consequently high free testosterone. Ultrasound confirmed PCOS. I went on the pill and spironolactone to regulate my periods and tackle my acne. The improvement on the acne was really dramatic and it really quickly disappeared (leaving me with scars though!). Eventually I decided to stop the spiro and thankfully my skin stayed clear.

So I'm on Diane 35 at the moment and it's probably ensuring my periods are regular and my skin is clear...but I REALLY want to come off the pill because I hate not knowing what my body is really like. I really want to know the truth.

Is there a chance that the stressful period in my life brought on the symptoms and now that things are more on track, I may not have such severe symptoms? My diet is probably a bit better, having eliminated white bread and being aware of the affects of sugar.

I really really want to go off the pill and see whether I get periods again and whether my skin is okay (I can tolerate pimples but really couldn't handle going back to having severe acne). I'm so so scared of what I might discover though. I'd be devastated if my period never came on its own...I don't want to just depress myself.

One day I want to have kids and I don't want being on the pill for so long (so far 5 years) to reduce my fertility further than it already is from PCOS.

What do you recommend? Should I go off it and see what happens, or should I keep my head in the sand and wait until I NEED to go off it (ie. to try to conceive)?

Bemm4 · 02-22-2008, 09:56 AM

Hi El,

I have had PCOS for years. I am 43 years old now and just went off the birth control pill. I have been on and off the pill since I was sixteen years old. I had alot of issues with bleeding, 9 months straight once. The only time I went off was to try to get pregnant. I was on the pill for 8 years before I tried to get pregnant. I had alot of help with fertility drugs and surgery to get pregnant. I do not think being on the pill made it harder for me to get pregnant, I know it was the PCOS. I did go on to get pregnant five times. I had 3 losses and have two beautiful healthy children ages 14 and 8.

The only thing I can suggest is if you really want, try to go off the pill and see what happens. I know I tried going off a few different times because I was afraid for being on it for so long. My problems came back after stopping. I know everyone is different though. If you satrt having problems you can always go back on. I wish you the best. I have been there. I am so glad I am past all of this now. If I had to do everything over again I would in a heartbeat.

crissy124 · 02-28-2008, 05:08 PM

El.....The doctors didn't diagose me either until late because I am small....so when they ran the test that's when they found out. I was on the pill a couple of years ago but came off b/c I wanted to conceive....My period is regular when it wants to be...maybe u can ask ur doc about metformin it's suppose to regulate ur period.....but I think u should come off the pill

littlemissblush · 05-11-2008, 03:33 AM

I was on Diane for about 10 years and went off it 4 months ago. My skin is going crazy again!When I was on Diane,my acne was under control and my skin was perfect. I dont want to go back on it as i have been on it for 10 years and really dont want it to effect my fertility. So just be warned that this could happen to your skin. I am now thinking of cutting out sugar and carbs and hope this works for me. Diane has been the only thing to keep away my acne in the past but unfortunately I cant be on this forever. My periods are also irregular now too. Maybe try to go off it for 6 months and see how you feel. Every ones body is different.

el_9_el · 05-11-2008, 03:42 AM

Hi all,

Thanks for your tips. I decided to see a gyno before doing anything. She says that because I was diagnosed with PCOS 5 years ago, it is difficult to know if I have it now and how bad it is if I do have it. She told me to go off the pill for 6-8 weeks and to follow that with blood tests and an ultrasound. She thinks that my skin should be okay for that duration - she says it's usually around 3 months post-pill when the skin gets bad again. Does that fit with your experiences?

So far I've been off the pill for 3.5 weeks... I've noticed some changes - no pimples yet, but my skin is oilier. I feel like I have worse body odour and I also feel much more anxious or nervy. That's all I've noticed so far.

I'm very nervous about my tests results. I hope they're not too bad....only 4 weeks to go....