Going off Diane

I was prescribed with Diane 35 for Polycystic Ovarian Syndrome (PCOS) about 10 years ago.

PCOS is a relatively common condition for women, however, the root causes are not totally clear. It can cause tiny cysts to develop in the ovaries due to an imbalance of the following hormones – oestrogen, progestogen and androgen.

Potential long-term problems with PCOS include: increased risk of developing type 2 diabetes, high cholesterol levels, high blood pressure, increased risk of stroke, heart disease and higher risk of developing cancer of the uterus.

At first I took Diane 35 without asking questions, trusting that it was the right medication for me. I didn’t have any noticeable side effects, however, as the years passed, I started wondering when I was actually going to be cured. The truth was that Diane 35 is not a cure for PCOs, it just deals with the symptoms.

Diane 35 is a medication that consists of a combination of two hormones: cyproterone acetate – a progestin that counters the conversion of androgen to its more active forms – and Ethinyl Estradiol, the estrogen component of most birth control pills.

By impeding ovulation, Diane 35 prevents the formation of cysts and the development of its symptoms. Diane 35 has been prescribed not only for women suffering of PCOS or related conditions, but as a contraceptive pill in many cases.

However, the side effects of Diane 35 are vast, including: nausea, unusual tiredness or weakness, weight gain or loss, headaches, depression, apnea, migraines, increased blood pressure, liver problems, changes to the shape of the eye, vision changes, blood clots, breast cancer, and stroke.

Last year Diane 35 was banned in France after reports of women dying as a consequence of taking it. The US has never approved it.

I have visited different gynecologists and specialists throughout the years in many countries, but when I ask about the timeframe for going off Diane, they always answer the same: some women’s bodies adjusts naturally and they can go off it without major problems, but others have to take it for the rest of their lives.

A few doctors suggested that I try to stop it for 3 months and see what happened. I tried and all the original symptoms returned, but stronger, and I felt forced to start taking it again.

During those years not one single doctor ever suggested that food and lifestyle could have an influence over my health issues. A few of the doctors I visited even advised me to eat whatever I wanted since I was thin.

The words exercise, nutrition, sleep, or stress were never part of the medical vocabulary during my appointments.

I insisted at the time that I was concerned about taking such strong chemicals over such a long period of time, but my doctor simply recommended that I switch to Jasmine and then to Evra Patch as I was told that the doses were lower. Yet, after only a few months on these medications, things got worse and I had to start taking Diane again.

Eventually, I started developing other medical problems and it took me a while to understand that they were side effects of Diane. I was constantly ill, tired, had frequent migraines and started to lose a lot of weight which was, for someone that is already thin, bad news.

By 2012, I was diagnosed with pre-diabetes, hypothyroidism and metabolic disorder. I started to spend my holidays not visiting capital cities or exotic locations, but medical specialists, taking all sorts of tests.

One night I was sitting at the side of my bed, my face covered in tears, thinking about quitting my job and altering the plans I had at the time. I was no longer able to work properly, partly because I was feeling incredibly tired, but also because I felt overwhelmed with all the diagnoses. I felt nobody could understand what I was experiencing as the symptoms with these kinds of health issues are not always visible to others.

That night I started doing research about my conditions, and I found blogs by people sharing their experience on how they reversed all sorts of medical problems by changing their lifestyles. The very next morning I decided I was going to take my health into my own hands.

It is important to note that I do not blame doctors nor do I think that medicine should not exist. But in my case, my doctors did not guide me in a fashion that would help heal my body.

It is now almost two years since I started to change my lifestyle. I have learned a lot about healing and helping my body to find its own balance. I have successfully gone off medication for insulin resistance and hypothyroidism, and I am currently going off Diane progressively by reducing the dose every 3 months.

Diane has been my companion for more than 10 years now and I wish my doctor would have first tried a natural way of healing.

Yet, if my experience serves to help other women taking this medication look for alternatives, then I feel my experience will have been worthwhile.

21 Comments

  1. Hi Jenn! I have been off the Diane for 4 months now and my skin is slowly becoming worse and my hair is falling out. I’ve seen several forums in which women say they have been off the pill for years and the problems still haven’t stopped. I was curious to how you feel a year after “stopping” it?

    • The Green Diary

      Dear Ermina,

      I have been off Diane for a little more than a year now (15 months exactly) and I have barely any symptoms.
      Before changing my lifestyle, I was on it for about 12 years (for PCOs) and every time I tried to stop using it I got several problems (plus the risk involved with blood clots) included an important amount of cystic acne and hair loss. Not to mention the mental exhaustion and depression associated with it.
      I have been changing my lifestyle for about 3 years now and slowly reducing the dose of medications, Diane included. I didn’t stop Diane overnight, it took me almost three years and I was basically cutting down the dose each month while making sure I was taking care of my body in all senses (good nutrition, correct type of exercise, stress reduction and proper sleep). Through the process I made sure to check with my doctor, who was very open to monitor my progress of going off Diane and I took blood tests once a year. I also had a diary where I wrote down my progress and the dose of Diane that I was taking each month.
      I went off Diane completely last January, my period returned to normal in February (after 12 years so quite an achievement) and I only have the occasional spot here and there when I eat junk food or after a stressful event.
      Of course this is a simplified version of my journey and everybody is different so what worked for me might not work for everybody. I wouldn’t cut it off in one go, simply because it can be too much of a shock for your body (learnt it the hard way) but since you’re already 4 months without it I think you could simply focus on helping your body get back on track naturally. It might take a few months to see improvements but it’s worth it.
      I hope this answer helps 🙂

      Jenn

  2. Hi Jenn,

    Your experience is very helpful. I would also like to get off of Diane. I’ve been on it for 10 years and am definitely ready to stop due to the health risks and to stop putting something unnatural into my body. I am now eating a very healthy diet and living an active lifestyle so think it’s the right time.

    I was wondering whether you could share how you reduced your dosage? I.e.did you take it every 2nd day for the first month or every 3-4 days? Would love to get the specifics of how to reduce your dose and wean yourself off of it without causing a massive shock to the system. I’ve also heard of Saw Palmetto – a natural herb that could be helpful to replace it.

    Any help would be much appreciated.

    Cheers
    Lisa

    • The Green Diary

      Dear Lisa,

      Thank you for reading my story and for sharing your experience. Regarding your first question, first of all I made sure I had medical supervision, I was very lucky my doctor was very supportive during the entire process. Second, I made an agenda/diary to calculate the time it would take me to go off Diane slowly but also when I needed medical checkups and blood tests (once every six months or once a year, depending on your case). For reducing the dosage, there are many ways of doing it, I guess the easiest would simply be to take one pill less every month (which would take about one and a half years to completely go off Diane).

      However the way I did it is a little more complicated, I was basically dividing or cutting every pill using a very small sharp knife. I was able to cut them in 12 parts so I would take 1/12 of each pill everyday for three months and I progressed 2/12, 3/12 etc every three months. It took me three years to totally go off it, the reason is because it takes about 3 months to start to notice any symptoms related to the change of dosage in Diane. Now looking back I could probably have divided it in eights, but I was just being very cautious and I didn’t know anyone else doing what I was doing. But patience paid off. This process also allowed my body to slowly get used to the changes without causing a major shock. I have to say every three months I would experience small symptoms that would fade away very quickly in a matter of days.

      For my entire process I used the official information from the medication’s website to guide me on pharmacodynamic properties of Diane but also on when (and under what dosage) there is a major risk of Venous thromboembolism (VTE) or cerebrovascular accident. This is REALLY important because the idea is that you minimize the risks associated with going off the medication, which as you might know are also quite serious.

      Important note: from the moment the dosage of Diane is reduced there is no longer a contraceptive protection, therefore an additional contraception barrier method is required.

      I also avoided any supplements, mainly because of possible counter-interactions with the medication but also because I didn’t want to go from depending on one substance to another one. For this reason I never tried Saw Palmetto or any other herbal replacement during the three years I was going off medications and I only focused on having a nutritious diet, exercise, sleep and stress management. Nowadays I do take Maca and Agnus Castus tincture but only in the very rare occasions when I let myself go for weeks of bad habits, but 90% of the time I focus on simply having a healthy lifestyle.

      I hope this helps,

      Have a good day,

      Jenn

      • Tanya Flores

        Hi Jenn,

        I have been using diane 35 since 2012 beginning with 6-month on-off interval (6months on, 6 months off) for my PCOS. My hands then started turning yellow/orange sometime in 2013. I thought then that maybe I could have developed jaundice as a side effect of the bcp. I undergone blood tests, hepa tests and liver ultrasound but everything is normal so I was diagnosed with carotenemia (too much carotene in the body) since my eyes remain white.

        When I consulted another OB, I was asked to do numerous hormonal tests and ultrasound of the ovaries to identify the cause of my PCOS. Unfortunately, only the ultrasound follows the symptoms of PCOS and my hormones are balanced which is confusing because I started having acne again which normally appears 5-6 months after stopping diane 35. The doctor informed me that too much progesterone(? Not sure anymore if this is what she mentioned) in the body can cause yellowing of the skin and is harmless so far.

        At first, I would rather have yellow hands than stop the pill and deal with my cystic acne. But now, people think I’m sick because of it and I would gladly go off the pill if there’s away without having worse breakout. I thought of slowly limiting the dosage of diane from every 6 mos to every 3 mos. Unfortunately, I don’t know how to continue from here. How do I reduce the dosage? My OB doesn’t seem to have experience on this.

        Any suggestion will help

        Thank you,
        Tanya

        • The Green Diary

          Hi Tanya,
          The first thing that I would be worried is going on and off Diane in 6 month intervals. The reason is because of the risks associated in the first 3 months after either starting or stopping the medication. These risks are mostly related to blood clots. I would suggest you to do some research on the medical information about Diane35 and the risks associated with doing this on/off Diane, you can use Vademecum for example, the Bayer site or this document also from Bayer last revised March 2017 http://omr.bayer.ca/omr/online/diane-35-pm-pt3.pdf

          I would rather go on diane for a full year but reducing the dosage gradually, all with medical guidance. However, because of what you mention of yellow hands I am concerned about your liver, kidneys or pancreas being affected, this is definitely a major concern.

          Regarding the yellow hands I don’t know what could be causing this and a doctor needs your entire medical file to determine this issue. Yellow hands could be related or not to Diane, to the combination of medicine, food or any other factor. I am glad you did blood tests and other studies and I suggest to keep insisting until you are 100% sure on what is causing that.

          For reducing the dosage, unless your doctor is very open minded and understands about nutrition, I do not think he/she will be favorable of reducing the dosage. What I can advice here is to first make changes in your lifestyle based on your own medical problems (adjust nutrition, type of exercise, sleep patterns, stress management, avoiding chemicals- from plastic containers, comercial lotions and shampoo etc…). The only thing that I would not do is to take any herbal remedies while on medication because of the interactions between chemical- I would leave herbal remedies and extracts until after you are off medication. Balancing your body takes time so you can start there without even changing your dosage and once you are very stable on that side, you can start then reducing dosage. As I mention in my articles, what worked for me was to reduce my everyday dosage by cutting the pill but it was all very calculated and I kept a diary for 2 entire years about everything I was doing. I also had second opinions with doctors and made blood tests every 3 months.

          I know it sounds like a lot of work and it is, that is why instead of rushing to stop medication I took 2 years to balance my lifestyle and reducing medication so that my body had time to adjust without putting too much stress in it. I had no secondary effects, all my symptoms are gone, have no cysts in my uterus and no acne.

          If you would like to skype one day let me know, all I can help with is with my own experience as by no means I am a doctor nor I can give medical advice, but if I can help you to at least reduce the impact of the medication in your body let me know and I am glad to have a chat.

          All the best and keep us updated!

          Jenn

          • hello Jenn,

            Thank you for sharing your experiences.. can i ask one question please. i took diane 35 for 4 months because of my pcos however it doesnt help me a lot with my symptoms thats why i stopped taking it. i am off with it for 8 days now and i am having palpitations what should i do? my ob advised me to take yaz but i am afraid my body will depend on medicines thats why i am planning not taking anything.. i will appreciate any advice from you.. thanks in advance.

            Gie.

          • Dear Gielian,

            The problem with both Diane and Yaz are similar in regards to blood clots and vascular risks. For the palpitations I suggest you visit a cardiologist as it could or could not be related to the pill. If you are already off any pills perhaps it would be worth it to try a natural approach (plant-based, non-processed and nutritious dense foods, exercise, good sleep and stress management) for a few months and see if that helps with your PCOs. Your hormones start responding after 3-4 months. Please do if possible with supervision/monitoring from your doctor.

      • Hi Jen, did you experience any periods or spotting during the time of reducing the dosage?
        Thanks. Romina

  3. Hello Jenn!

    My name is Avantika, I’m a 22 year old who has been on Diane 35 for the past 3 years due to PCOS. I believe Diane has greatly improved my skin, as I used to suffer from breakouts, and up until now I don’t think I’ve had many side effects like depression. I have lost a lot of weight though (for the better since my doctor recommended it and am of a normal, slightly underweight weight at the moment). I’m quite careful about my eating, and as my mother has suffered from PCOS I’m extra careful to make sure I live a healthy lifestyle.

    However, lately I have been wondering about what the pill has been doing to my body. Doctors have recommended that I go off it for 1-2 months and then if my symptoms return I can go back on it, but I’m quite scared to stop Diane. What if I start breaking out again? Or start putting on weight?. As someone who is anxious/a bit stressed by nature, I could certainly do without worrying about more things. Diane seems to have helped me, and while logically I know I should do something to stop having to depend on it for a regular period, it eases the distressing symptoms (acne, weight gain) that PCOS brings.

    I guess what I want to know is, from your experience, did stopping Diane entirely make a big difference? and would you recommend cutting it out entirely for about 1-2 months, or taking a more gradual approach? You’d said somewhere that you’d cut up your pill into really tiny pieces but honestly I feel like I’d probably lose pieces so would maybe taking a few less pills work? I’m a bit wary of skipping pills, because that might have some side effects too right?

    Also, in your research did you come across anything that said stuff about how you lose weight on the pill? I couldn’t find anything conclusive so I don’t know if I lost weight because of what I’ve been doing or because of the pill.

    Anyway, sorry for the long rant. Thank you for sharing your story! It is inspiring in some way to know that getting of the pill is possible in the long run.

    Hope to hear from you soon!

    • The Green Diary

      Hi Avantika,

      Every case is different and as I am not a medical practitioner I can only suggest based on my own experience.
      I think you have been on the pill for a good few years now and your body is used to it by now, but I also think psychologically you might also be attached to the pill because it gives you a degree of security that you are not experiencing PCOs symptoms. As I have mentioned before I think the best approach is first make sure you are leading a healthy lifestyle -not the commercial approach of healthy -but truly looking if possible into mostly plant-based, non processed, nutrient dense foods, a healthy way of exercising (not over exercising but combining cardio with strength) and in your case I would really work into anything that triggers your anxiety or stress. Stress releases cortisol and interferes with your sleep patterns which are crucial for balancing the health of the body. I recommend breathing exercises, meditation, yoga, mandala coloring etc..Once you are more grounded in those areas then you will feel more confident that your body will start adjusting and becoming less dependent on the pill. If you decide to suspend it overnight, you might just be aware that you can experience a sort of rebound from the medicine that it can take a few months to heal, that’s why I recommend a progressive approach so that you can have more control over the response of your body. My experience was not only going off medication but working with my body in a progressive and respectful way. I suggest you do all this under medical monitoring. I hope this helps

  4. 15 years on it and i wld keep reading about different people’s experiences on how they weaned themselves off. it wasn’t until i read yours in December 2017, that i bought a pill cutter and took teeny portions for a few months (3-4 months) and then stopped taking it. about 40 days after, my cycle regularized. April onwards things have been back to normal. i was most worried abt my skin going crazy, but i get a spot here and there when i am stressed or pmsing. i really hope that it’s not going to get worse in the coming months. the best part so far is that i don’t feel depressed or overwhelmed like i used to. i didn’t even realize diane was doing that to me. thank you so much for your post, but thank you more for sharing how you weaned yourself off of it in the comment (cutting up the tiny pill) – i don’t know how many people will read the comments, so it might save lives if u add that part to your post.

    • The Green Diary

      Hi Tushie,

      I am glad to read your message and that my experience helped you somehow. Remember that more than going off medication what I did was taking care of my body through a healthy lifestyle. It has been a few years now that I have no medication or pills and as long as I take care of my food habits, exercise, sleep and stress management I am healthy, no negative symptoms or rebound. Since you took the pill for so long, I really recommend you take care of your health very closely at least for the first year and keep monitoring through blood tests and any other medical tests you might need. Look forward to hear more about your journey, hope you can keep us posted! J.

  5. Thank you for sharing your journey.
    I am going through similar circumstances.
    I was wondering, how did you wean off Diane 35?
    Are you completely finished the drug now?

    • The Green Diary

      Hi Rhonda,

      I went off Diane 35 as I describe in my articles and posts in this website, first by making sure I improved my lifestyle (diet, exercise, sleep and stress management) and then reducing the dose progressively. I have been off all medications for a few years now, had no negative symptoms and I am healthier than ever. However I am still having a healthy lifestyle and I still do blood tests every year to make sure my body is responding well. J.

  6. Annonymous

    I am taking Diane 35 for 3 months for PCOS.(May, June & July as per my OB specialist) We are planning for a baby. I have irregular periods but normal flow was there. But after starting the Diane i had very little bleeding only.Please suggest

    • The Green Diary

      Dear M,

      I do not have all the details about your case, however while you are on the pill you cannot get pregnant. Also, once on the pill your period is quite different from the natural one (you can do some research on withdrawal bleeding). I think when you want to get pregnant your doctor might suggest to stop taking Diane. In any case, I always suggest the same approach, a natural one that takes into consideration food (mainly plant-based, non processed, nutrient dense foods), exercise, good sleep (at least 7 hours of daily sleep) and stress management (meditation, breathing techniques, mandala coloring, yoga, etc..).In addition to visiting your doctor you can also visit a naturopathe to guide you on a natural approach to PCOs and pregnancy. I hope this helps. J.

  7. Hi Jenn! I’ve recently been diagnosed with PCOS and have been taking Diane35 for 5-6 months now. I’ve been reading about its potential health consequences and side effects after stopping it and am getting worried. I believe that my sleep patterns are affecting my body but I am a flight attendant and the only way to fix that would be to quit my job. Do you have any advice for me? Also, can you explain in more detail about how you cut the pills up? do you mean you took 11/12 of the pill for 3 months and then 10/12 for the next 3 months and then 9/12, 8/12, etc.? Thank you so much!

    • The Green Diary

      Dear Shin,

      There are serious side effects on both, taking and stopping Diane, that is why I decided to do it progressively and while being monitored by a doctor. The first year when I started this process (it took me 2 years in total) I was traveling abroad very often due to work and I understand this is a challenge ( as well as eating healthy on a plane!). However, what really helped was keeping a diary to write down my progress on sleep and making sure I slept at least 7 hours a day (even though it won’t always be possible to sleep at the same time of the day/night every day). As a flight attendant is also important to keep your exercise on track as with the pill there is already a risk of blood clots and flying increases that risk. For cutting the pill, you understood the process well, taking off 1/12 of the pill every 3 months (don’t forget to monitor it through blood tests and there are some tests to identify possible blood clots). I hope this helps. J.

  8. Angelica Bren Pascual

    Hi. Im Angelica Pascual. 24 turning 25 years old in October. I was diagnosed with PCOS just this August 1. And my doctor told me to take Diane 35 on the start of my menstruation. Today was the first day. But im having second thoughts in taking it as i read blogs or articles women who has pcos and taking diane, with having side effects.What do you think should i do?

    • The Green Diary

      Dear Angelica,

      As I am not a medical practitioner and don’t know the details of your case, my opinion is only based on my own experience. I would suggest to first try a natural approach as the one I describe in my articles and throughout my posts. Even if you decide to continue taking Diane I would suggest to start looking into improving lifestyle healthwise. The side effects of the medication are real and very serious and I am sure your doctor guided you through each of them before suggesting the medication. If you decide to stop the medication, I suggest talking to your doctor and creating a plan that includes plant-based nutrient dense and non processed food, exercise, sleep patterns (7h day min) and stress management. It is a slow process but much kinder to your body. I hope this helps. J.

Leave a Comment

Your email address will not be published. Required fields are marked *

*