Carly’s story:
I was referred to a psychiatrist for adult ADD when I started my first year at university. I made a passing complaint to my aunt, who is also a GP, over the summer about some occasional acne around my period. She suggested that I try Diane-35. I was also taking dexedrine at the time, but had not had any problems with it.
I was just fed more medication
By the time school started I was an emotional wreck. I was experiencing severe mood swings, depression, anxiety, insatiable appetite, I began gaining weight at an unprecedented rate (in spite of being on amphetamines). My focus, concentration and self-esteem all took a nose dive, and I frequently thought of suicide. I tried exercising harder, as I had been in good shape and athletic before the nightmare began but I just seemed to get weaker and weaker. I just assumed that I wasn’t capable of accomplishing anything and that I was doomed to be a failure. So what was the point in living anyways? My mood never really improved, but eventually I just became apathetic and accepted my unhappiness. My psychiatrist didn’t think to consider Diane-35 as the cause of my symptoms, so his answer was just to feed me more medication until we found something that worked. He admittedly doesn’t know much about hormonal contraceptives.
It wasn’t until a year and a half later, when I stopped taking Diane that things began to improve. I was still anxious, but slowly I started to get better. I started running again and was amazed at the rate of improvement that I was seeing. I was easily adding a mile every week. It was so totally unlike anything I had experienced before. I assume that this was because my testosterone and DHT levels were no longer being suppressed to the point of non-existence. I stopped menstruating entirely, eventually I noticed a thick layer of oil on my skin, and the development of cysts all over my face. Soon the hair on my head was falling out in clumps. I’d look at my pillow in the morning and it would be covered in long hairs. Then my cheeks began to erupt in pustules. This had never happened before in my life. Before I knew it I was also growing facial hair. I had gone from a healthy, happy, fit and energetic young woman to become… something else entirely.
Where have all the good doctors gone?
I am now taking two anti-depressants, as well as adderal and yasmin. Now I’m stuck wondering if I would have really needed any of it in the first place if the cause of all my problems had been correctly addressed from the beginning.
I have lost faith in our doctors. You can’t contradict or correct them if they are missing information. It pisses them off. I mentioned to my family doctor that Diane-35 isn’t legally meant to be prescribed as a means of birth control. He says he prescribes it to young women all the time and that they often complain about the symptoms that I experienced after going off it. You’d think that would be a hint that it is a medication works only in the short term, but with severe repercussions afterwards that maybe its a bad idea.
The whole system sickens me, where have all the good doctors gone?
Response from Diana – the huntress – aka Millie Kieve who runs April
I began campaigning to get more truthful information about this drug following my daughter Karen’s experience of depression, weeping and other problems while she was taking Dianette.
I put up a Dianette page on April (Adverse Psychiatric Reactions Information Link) www.april.org.uk. The emails started rolling in. I have received over 150 reports of depression and other serious psychological reactions that women believe is caused by the drug known as: Dianette or Diane-35 which contains ethinyl-estradiol and cyproterone acetate (anti androgen). It is also known as Co-cyprindiol, Acnocin, Cicafem, Clairette and Diva.
I was shocked at the serious problems and devastation to their lives the women believed was due to taking this drug. I was also concerned that many did not know it was not licensed as a contraceptive and only recommended for short term use for hormonal problems, such as acne or hirsutism (excess hair) conditions.
Depression IS a known side effect of Dianette
Women who wrote to me, said ‘the cloud lifted, when I stopped the drug’, or ‘When I stopped I felt back to my old self’ so it seems the drug was the likely cause of their depression, self-harming and in some cases even suicide attempts. Karen’s psychiatrist later told me, “It is well known in the profession that Dianette causes depression.”
Weight gain was the only adverse reaction my daughter was warned about – this can lead to eating problems in girls worried about the weight gain. But I have had lots of reports as here from women of hair falling out.
Barbara Mintzes studied why it had been licensed originally and the direct to consumer advertising that included the misleading phrase used in marketing ‘The Pill that gives you beautiful skin’. This was featured by the Canadian Broadcasting Company some years ago.
I campaigned to persuade the Medicines Healthcare Products Regulatory Agency (MHRA) to send out warnings to doctors, once I realized how overprescribed the drug is without doctors informing some women it is not licensed as a contraceptive, due to risk of deep vein thrombosis (DVT). Few doctors seemed to realize depression may be an actual side effect. My concerns were so many women telling me they were prescribed antidepressants without being told to come off Dianette.
Some were on the drug for 6 or 10 years, when it is only recommended for a short term treatment. No warning about the high risk of thrombosis had been issued by the MHRA since 2002. I have had many reports of women who have died from DVTs while taking Dianette. One young woman told me she had a stroke at 29 years of age, and now suffers seizures due to the brain damage she suffered as a result.
Depression under the ‘Mild Reactions’ heading is inappropriate
I complained repeatedly to the MHRA that putting ‘depression and loss of interest in sex’ on the patient information leaflet (PIL) under the heading Mild Reactions was inappropriate. They eventually informed me they would review the safety of the drug after I had nagged the director in person and by mail for at least 10 years!
I was asked to send in the emails I had received together with data from the manufacturers. I was also asked to urge the women to report the suspected ADRs to the MHRA using the patient reporting Yellow Card System – a system campaigned for by several people, including me who were concerned at low numbers of adverse drug reaction (ADR) reports from doctors or coroners.
I was not informed of membership of the expert committee who would review the data for Dianette. The MHRA in their press release in May 2006 about the review of Dianette finally stated “Depression is a known side effect of Dianette”. This press release appeared on the MHRA web site – after an article had appeared in The Guardian “Pill under review over link to depression”
After the MHRA’s ‘expert’ panel review, there was no press release or posting of results of the inquiry on their web site but I was told additional warnings were recommended to be added to the leaflets about depression. I was not informed of what the warnings were and searches on the MHRA web site do not come up with any results of the review or warnings.
Bayer which makes Diane now includes on their Summary of Product Characteristics – SPC:
depression and mood changes is a common (1/100) side effect noted in clinical trials.
Since the MHRA review they have added the following to the patient information leaflet (PIL)
4. POSSIBLE SIDE EFFECTS
Like all medicines, Dianette can cause side effects, although not everybody gets them. Tell your doctor or pharmacist if you are worried about any side effects which you think may be due to Dianette.
4.1 Serious side effects – see a doctor straight away
Severe depression: Although, it is not considered a direct side effect of Dianette, you should stop Dianette as a precaution, if you develop severe depression, and see your doctor straight away.
I wonder how they can justify the statement that depression is not considered a direct side effect of Dianette – when on the SPC they state depression and mood changes is among common side effects and even the MHRA in their press release in 2006 about the review of Dianette stated “Depression is a known side effect of Dianette”. With colleagues I put together a poster on this issue.
Johanna says
What an ordeal! I’m beginning to wonder if some 19-year-old stoner boy on a skateboard might be a safer source of drugs than the average doctor these days. He probably knows more about side effects.
Carly, I so hope you are on the road to a somewhat-normal life. You probably know this already, but it’s a good idea to keep an eye on Yasmin, a/k/a Yaz. This is the Bayer hormone product sold here in the US, and billed as birth control that also combats acne and “pre-menstrual dysphoric disorder.” (By some miracle they never got Dianette approved on the US market.) It contains drospirenone, a progesterone relative, instead of the anti-androgen that’s in Dianette, so it should not be as hazardous – but it is on the FDA’s Top Ten most-complained-about drug list, both currently and since 2004. The most serious issue is the small but real risk of blood clots leading to heart attack or stroke – which is true of all birth control pills but appears to be worse for Yaz than the older ones. It also has been reported as causing depression in some takers. I doubt there is any synthetic hormone product that is totally innocent on that score.
Finally, Tina Fey has a little something to say … if you can deal with any humor around this question at all, please have a look at this Saturday Night Live spoof-advertisement for “Annuale,” the birth control pill that lets you cut your periods down to once a year! I didn’t really appreciate the satire till I read your story:
http://www.nbc.com/saturday-night-live/video/annuale/221774/
Rosaria says
I will definitely be submitting my own report as well. I’ve taken Diane-35 on and off for many years for my acne and my mild hirsutism. It has also helped greatly with diminishing the occurrence of the benign lumps in my breast and has made my periods much more manageable. But with every benefit there is a drawback. Little to no sex drive. I developed that infamous lump in the tail of Spence. Depression like nobody’s business. Fatigue to where you’re often tired even after a good 8 hour sleep. Loss of interest in even mundane things like bathing, which led to a very mild weight gain for me because you try to combat that lethargy and depression with comfort foods–not knowing what else to do. I’m six months into my latest Diane-35 stint and I’m feeling all of the negative above.
Leonie says
My friend was on Dianette for 5 years before she recently realized that it could have adverse effects. She had heard it had been banned in France and began researching the drug online and through this RxISK website. She became concerned and went to her doctor. This is what she said:
“When I told the doctor of my concerns, that Dianette could cause blood clots and had been banned in France, she laughed in my face and said ‘but this is our best selling product’. She was not listening and just wanted to rush me out. She treated me like a nuisance/ a bold schoolgirl and made me feel like an idiot.”
My friend left with a prescription for Yasmin/Yaz which (upon more RxISK researching) seems to be just as dangerous. Irish doctors seem totally clueless and blind to any prescription drug-induced harm. My friend is now looking for a new doctor.
Gina says
I am 19 and have been on Diane-35 for 4 months and ever since the first month of taking the pill, I have been an emotional wreck. This isn’t my first time on the pill but is my first time on Diane-35. I get overwhelmingly sad very easily, tiny instances which usually wouldn’t bother me can trigger very emotional depression. I feel like everything in my world is caving in and that nothing will ever fix it. I become very irrational and feel like I have no control over me emotions or consequential reactions. This happens all through-out the month.
An example is I was with friends playing Xbox, which I haven’t played much of in my life, and they made note in a friendly way of how I’m not very good at playing. I they spiralled into an emotional blur and had to instantly leave my friend’s house. When I got in the car I was uncontrollably crying because I thought that my friends hated me and that meant I was going to spend the rest of my life alone and never be able to have a career.. just stay in my parent’s home all my life. I deleted all of my phone contacts because I figured I had no use for them and rejected calls from my best friend who had noticed something was up. The next day I couldn’t believe that I felt and acted like that and was very annoyed that I deleted all of my phone contacts.
Occurrences like this are happening every day, sometimes bigs and sometimes small. I never used to be a crier but I can’t hold back my tears every single day over silly things. I hate putting my friends and family subject to these emotions that control me and I am very sick of feeling helpless, depressed and a subject of a pill which is helping my health physically but damaging it mentally. I am hoping that these negative effects of Diane-35 which wear off of become controllable because I am joining the army and may lose my job placement if they find out I’ve been suffering with symptoms of depression. I haven’t gone to a doctor because of that fact.
evanell says
I know what you mean about the sensitive to the smallest things. I would spiral into an uncontrollable crying mood and think I would achieve nothing in my life and don’t get my wrong I still have low points but nothing compared to being on Diane 35/Estelle 35. I wanted to die. I have been off the pill for nearly a year and I am glad – I didn’t realize how dull my personality had become and how weak I felt. I love my partner but I didn’t realize how much crap he put me through and just kept slogging on this weak and sad shell.
You are definitely suffering some form of depression as I am but I refuse to take drugs for it until I am a year free of Diane 35.
Chelsea says
Did you experience any side effects when you came off the Diane?
eilis says
im so sorry to hear of your experience please go to see your doctor or tell a good friend or family member how you feel, i did not know what was happening and tried to commit suicide in 2002 after four years on this medication and my whole personality changed, I didnt tell anyone and it was only after getting help and coming off it that the doc told me how dangerous this was and that i should never have been on it for so long she was my new doctor and called the suicide attempt a hiccup in my life!!! then told me how dangerous it was for your liver. Doctors really need to look at the whole person, I would never totally trust anyone now but have become more self aware
I hope you get the help you need and take care
Emma says
Hi! A couple months ago my doctor started me on Synthroid and Diane-35 at the same time, even though it’s not recommended. Anyway, directly after I started taking them I started feeling like utter crap. I wouldn’t get up in the morning because I didn’t want to go anywhere, I became deeply depressed within such a short period of time. Once I got home from school I would go to bed, then sleep straight from 4pm-7am the next morning when I had to get up and do it all again. I would spend the majority of my time crying, for no apparent reason at all.
My doctor took me off of both meds at the same time, about a week ago, and within three days I was feeling pretty much back to normal. I’m still feeling a little icky here and there, but overall, I’m definitely better without the medications.
Whether it was Synthroid or Diane-35, or a combination of both, I won’t know, but after reading this, I’ll definitely research each medication before I start taking them no matter what my doctor says.
Paula says
Hello!
I’ve been reading through and I can’t believe how many other females are experiencing this?! I thought that I was just all of a sudden depressed and anxious for no reason. Once I had done some research and started look at reviews it was so obvious that diane-35 was causing all of my issues.
I initially went on Diane-35 about 8 months ago because I was getting incredibly painful cystic acne and no other treatments were working, so I decided to change over to this pill, I was made aware of the possibility of blood clots but nothing else.. I have had almost all of the above;
– Extreme depression
– High anxiety
– Extreme lethargy (I could barely wash the dishes without having the need to sit down half way through)
– Weight gain (I have always ate well and exercised and for some reason I couldn’t shift any weight and it kept coming on)
– No sex drive (no desire what so ever, no emotional stimulation or physical stimulation was working, or appealing)
– Constant migraine headaches (almost daily)
I’m currently looking at other alternatives and thinking about coming off the pill all together and not going on another one.. Trying to weigh up which is more important, my quality of life or not having painful cystic acne and no self esteem.
I definitely think doctors should be warning women about these side effects, they are extremely serious and can be very debilitating to ones self and to their relationships. I’m glad I found some other women in the same boat as me so I know that it’s not just me and that I can fix the way I’m feeling by stopping this medication.
Ryan says
Emma, my wife started Diane 35 and is in a severe depression. I threw the tablets in the dumpster 3 days ago. How much longer til she starts clearing up? Could you email me? Concerned husband.
Sinead says
I’m. Reading these. Comments and in shock and at the same. Time. Relief someone understand what it’s like On This dangeors pill but I feel. Trapped now That I can’t come Off It I rely on it so much to keep My acne away but the mood d and depression are an every day occurrence it’s ‘scary to Think what’s going to Happen if I say on it or Yet again come off It
Sofia says
I had acne as well and for me it works halibut derma, it dries the acne and I never got any acne scar again.
Sofia says
I started with Diane-35 after a surgery to ovary cysts after some time I had my first panic attack, I start with a roller coaster of mood swings, a lot of anxiety, extreme sensibility to critics and depression i went to therapy and I was diagnosed with obsessive compulsive disorder (negative thoughts over and over) and started to take antidepressants ah and I had huge migraines too. The worst time was always in the last week of the pill. Well I manage to quit anti depressives and learned to deal with my emotions but still I wasn’t feeling like myself. Many years later I left the pill and to discover that I am normal again. No panick attacks, just a little bit of pms. I wish I had never been put up to this. And it seams the doctors still have a lot to learn.
Cris says
I’ve been prescribed Diane35 when i was 14, for the awful cystic acne and (head) hair loss that the hormonal changes brought with them. Around that time i started to feel depressed and anxious. I stop being social, happy, easy-going and active. I started to see psychologist and psychiatrists, attempted suicide multiple times and self-harm in different forms. I was diagnosed with different “syndromes & disorders”, according to the different Drs. i saw. Bipolar, GAD, Borderline, Atypical Depression Syndrome, OCD and all you can think of, i’ve been medicated for!! In the past 30 years (im 44 now), i’ve been feeling like a lab rat, just waiting for my time in this earth to be over, because my life energy has left me a long time ago. Reading all this, today, im stopping Diane35. Who knows? Maybe something may still change…
Natalie says
Hello. I cannot believe it’s taken me to today to do some research on “dianette” AKA “co-cyprindiol” which I’ve been takin for almost 2 years and 6 months now for severe acne. Around 15 months ago I started experiencing severe dizziness and anxiety. To which originally my GP diagnosed me with vertigo because my ears were clogged up with a lot of wax. I went to get this treated and had my ears syringed. This did not help like everyone told me it would. My Gp then went on to diagnose me with anxiety and depression and still to this day hadn’t made any suggestions that my pill could be causing this. I am struggling deeply with panic attacks and anxiety I can’t go outside the door I’ve even been having suicilde thoughts because I can’t bare this out of control feeling any longer I have weekend counceling and it just won’t go away. From reading dozens of negative articles on this medication I’m now wondering in shock if is the co cyprindiol making me feel this way and causing these effects of my mental and wellbeing. Can someone please point me in the right direction I’m at the end of the road with this. Thankyou
Tammy says
The same has happened to me, I was put on dianette a year ago. I was prescribed it for pcos, a diagnosis I’m not entirely sure about as I only display one of the qualifying 3 symptoms. I’m not overweight which is one, and I don’t have cysts. A simple blood test was taken, couple of one sided questions asked , wasn’t examined either. Yet I was put on this dianette pill after my gp knowing my history struggles with my mental health. It goes without saying this pill made it MUCH worse. I felt depressed and just very heavy with stress ever since, started to develop a panic disorder, constant suicidal thoughts, weight gain that just wouldn’t shift ( I did comfort eat , completely new symptom) but I am an avid exersiser so this again was out of the ordinary. The way I looked at my partner changed too . He didn’t look the same to me, what I mean is I wasn’t attracted to him, I didn’t want a hug, a kiss repulsed me and libido completely dead and buried. I went on a dream holiday, a place I had always wanted to go and the first 2 days I cried all the time wanting to go home, telling myself if it got too much I could always just jump off the balcony. I should not be thinking like that! There and then on that 2nd day I stopped taking my tablets. I’m just about over 2 weeks stopping taking them now and today has been a good day I feel a bit happier and a bit more open for giggles with my partner, even contemplated a hug earlier ( big step) . This needs addressing, this pill puts people lives at risk physically and at the hamd of themselves . thank you all for sharing your stories too
Megan says
I am a 21 year old female who has struggled with mild acne since I was 15. I was prescribed Diane-35 about 2 years ago after I talked to my doctor about relieving my acne. I was also prescribed a cream (Benzol-Peroxide 4%/5%) and saw an immediate improvement in my skin – I went from being a girl with acne to a girl who got compliments on her skin all the time. Acne was non-existent, I barely had to even wash my face. It was also so glowy and beautiful! However, like many other posts, I experienced depression and anxiety. The smallest things would trigger me and even my friends and family would joke about me being “crazy” while on this birth control.
For now, I’ve started on one called Freya and my acne is somewhat controlled but coming back slowly. I don’t know if the cream really even helps, but I will continue to use it. My hormones are controlled, I’m feeling much happier and much more like myself but I miss my days with perfect skin that I never had to worry about. Anyone have any idea of what to do to get back to my glory days of clear skin?
Zes says
I am 23, I started taking Diane 35 this year of 2020 February 20. I took it because I was prescribed by 2 OB’s. The first OB prescribed me to take Diane due to vaginal discharge I wasn’t diagnosed with PCOS back then but she decided to have me take Diane which I did not because I was just a teenager and I do not like taking drugs then fast forward back in 2017 or 2018 I had menstrual fluctuations and I was having discharge with unusual smell then they performed an ultrasound then they saw tiny cysts on both ovaries, right then she diagnosed me with PCOS she gave me a choice whether to take a pill for a week to see if my mens get regulated or take a contraceptive pill. I went for the 1 week pill cuz I really don’t like to drink medications everyday. Then fast forward again, at the end of 2019, Oct and Nov, I did not menstruated but on Dec I did but twice and menstruated for weeks and both are heavy flow. So when 2020 comes I decided to take a pill but forgotten last January and when February comes I decided do it so I waited for my mens to come and when it did I started taking Diane-35. But after 5th day I stopped taking it, I stopped not because of depression but because of other side effects. My left leg and arm aches and my neck aches it feels like there’s a pressure aroun my neck, I’m getting headaches and I’m having chest pains too. I panicked because of the fear of blood clots because I started having shortness of breath and palpitations. My fingers are aching whenever I wear rings. My nerves are aching. I’m still having chest pains after I stopped, it’s my 2nd day out of the pills. I’m going to see a cardiologist to check my heart and lungs just to be safe.
Jessika says
I’m 15 and I’ve taken the pill for 8 months. It was the worst decision of my life. Even though my skin cleared up quite a bit, the pill definitely triggered mood swings, and severe depression. I stopped taking it a week ago and already I’ve started to feel less anxious and depressed. To anyone who thinks about starting the pill, please be very careful. My dermatologist didn’t tell me the side effects. I started feeling nauseous and eventually started throwing up every day at school(4 months straight). Please please please don’t take it
Darc says
Currently 1 and 1/2 months into taking this pill for severe acne. If anything my acne only appears to have gotten worse. I’ve suffered from depression years ago at 17 (im now 24) and slowly can feel myself getting irritated and having a bad attitude / mood swings / emotional – but not depressed. Just wondering at what point the acne will show signs of disappearing or if i should just cut my losses and save my personality whilst i still can.
Joanne says
This makes me so angry they even prescribe this drug. I took it for 6months and cried several times a day for no reason. It coincided with the death of a close family member so I attributed the suicidal feelings to that. Years later I took it again and within a week I was crying several times a day uncontrollably. I haven’t touched pills since. I think it’s dangerous to upset my whole hormonal regulation system when I can just use condoms. This drug is so dangerous.
Risham says
I suffer from anxiety induced ibs and was prescribed diane. After a whole second month of anxiety and crying my eyes out today, I decided to do some research and came across this article, and things suddenly make sense. Thankyou for putting your story out there and struggling to get it recognized. It has helped alot.
Dominique says
I took Diane 35 after an uncle OB suggested it as an alternative to Accutane. I had also just gotten into a relationship so it seemed to kill two birds with one stone. I may have taken it for two months or so but my relationship was definitely at its breaking point, I was constantly mad at him, anything “set me off”, my husband (same BF) just reminded I threw a purse at him twice. I couldn’t get out of bed before 11:00 am, I remember one morning I literally asked God for help and almost immediately my attention went to the pack of pills on my nightstand. I threw it away that day and IMMEDIATELY felt better. It did clear up my skin and give me a glow but that went away as well as the “crazies”. I got on accurate for 10 months which was great. That was 6 years ago, I don’t get acne ever. Take the accutane!
Alice says
Hello. This article gave a hope for my life.
I have been on diane for the last 2 years, also known as Zyrona in my country. It is absolutely horrible how unaware I was of all this.
Im currently a ghost of the person I used to be. I always struggled with fatigue, but what Im going through now is beyond words.
The 3 week of the pill, before the 7 day off, is a nightmare. I never had panic attacks like the ones I experience now, I can’t breathe, I become crazy suicidal, like a need to end myself, jump of the window. It follows through the free-pill week. Im mostly bed tied for a week, even going to use the bathroom is a struggle.
My weight gain : my normal weight has been 57kg, I went down to 53 before the pill, then when I started it kept coming up. Never in my life before the pill I went above 59kg. Currently I’m 69kg. I have been doing everything to go of, I managed to get to 64 by excercise and being in a deficit. However it stopped there and no matter what I did it could’t go down. Just for it to go back to 67 by me barely eating.
My allergies – I’m don’t know yet if its linked to the pills but I have developed horrible rash on my body, mostly my hands. I never had issues like this, but recently I became intolerant to everything and I’m constantly bloated full of under skin hives that hurt horibbly.
I started loosing alot of hair.
My depression, my lack of energy, not being able to take a tiny longer walk when I used to climb and hike like crazy before.
I became so unmotivated in life, everything seems overwhelming and like a struggle, I talked to my doctor on several ocassions about diane but they told me it wasn’t the cause. I was only told to not take the 7day break but to skip and jump to next set, and that spiralled into making me horribly worse.
I went back to taking them for 21 days and having 7 day break but I never get my period. I start spotting when I start new set and that’s it.
My sexual drive is nothing like it used to be, and I constantly take painkillers to manage my headaches.
In the beggining the pills helped with my acne and hair growth, but recently I have been having strong cystic acne and my facial hair coming back.
I searched several times if diane can be linked to this on google, this is first time I come across a side that confirms what my inner self been telling me for a year. My husband has been telling me from beginning to stop taking them, but it felt too overwhelming for me to try other prevention metods and their possible side effects.
But now I became gradually worse until is almost nothing left of me, yesterday was my last day of the pill. Im very curious of what the future will bring and show me of diane really did make me loose myself.