dianette feels like it has been a total horror stor

[DinDIn]

[b]MONTHLY UPDATE


I am now one year off the Diane 35(Dianette).

I am still suffereing.

My hair has been shedding for eight months and still is shedding. It is not as bad as the first few months, but I lose hair each time I comb and I lose hair when showering when I never did before. I also have some itchy burning scalp. I Have some days where my scalp feels normal and others when its killing me. I lost over 50% of my hair. I am very angry about all this but I guess I have only me to blame. I have been on this pill 6 month and a year after stopping it is still ruining my life and I am still suffering. Dealing with hair loss is not easy. I can only hope that this will stop soon and that all my hair will grow back. I do have some re growth but I think a lot of it falls off as well. so this is my one year update. Not so great. I will update monthly more so that others going through this can get soem guidance.

Din

[Guest]

Dear Din,

I spent the last 2 hors reading your posts... and I think it was worth every minute. I didn't want to run right to the last page, I was hoping to see that you complately recovered on the last page. Now let me tell you my sotry...

Back in spring 2007 I had a very hard time.... Graduation (two faculties), breack up (a veeery traumatizing one) and above all an employment competion (100 ppl for 2 places in a big corporation in different country, and I was one of those two "winners"). Long stry short, I litterarily stopped eating and drank only coffe... lost 15 pounds ( i was already very thin to begin with) edded up with a bmi of 15.. didn't sleep for 2 months writing two final papers and getting ready for exams... 3 months after all that stress starter I strated loosing hair. All at once.. Iching and everyting... about 300- 400 hairs a day!!!!!!!!!! Long beautiful hair all over the place! Now that I know sooo much about hairloss I know that it was TE. So all summer long (my vacation after all that stress) I was actually stressing over hairloss instead of geting a well deserved rest. I knew I had to solve the problem before I leave for work in another country, becouse I knew I would not be able to handle it away from my mother's support away from my friends... So I went to ALL doctors instead of simply waiting until the TE will solve itself... BIG MISTAKE! So I went to a geno who did some blod work and I ended up with slightly higher Testosterone (about 10% above the normal edge)... DHEAs and thiroid came back ok. THe doctor said I have a minor PCOS... and prescribed my guess what? YEP!!! DIANE 35 (dianette is the same I guess)

Hair stopped falling out in a week or so... and back then I was veeery happy. I thought it was worth it as I could properly function. But that's not it.. My dermatologist presctribed me Rogain... so I had them both rogain and Diane... hair came back in 3-4 months. Just like u I did't have very think hair, but it was shinny and long and I was happy with it. nice ponytail and quite thik when styled for a party of special event... things went right for 1 year... but after a majour stress (I found out that my then boyfriend was engaged and about to marry) hair started falling out again! AGAIN! I went to the endo... and he prescibed me adrocur. in adition to diane... and hairloss stopped again. in a week or so. in 2009 things were going very well so my endo decided that it's time to take me off the pills and priscibed me Janin just to make my sistem free of hormones very slowly... what happened? after 3 months, all that beautifull hair started falling out like crazy (200 hairs a day). Although my Testosterone got veeery low, close to the low edge, hairloss continued. Veery wired. So I concluded that it was pure TE because switch of BPC. I didn't know what tot do..

I am a veeery procative person so I decided to go back on diane… I also started looking for aswers on the web... I found sooo much info. About herbs and especially maca… it balances hormones. It is a root that was considered to be a super food in Peru for 2 thousands years… about Polygonum 14 (a Chinese herb combination for healthy hair).. Biotin and zink also balance hormones in a way and are essential to hair. I bought all that stuff… So I decided to combine natural stuff with diane 35 just to see what will work out of this. hairloss diminished 3 months after it started… didn’t stop, just diminished.

Then I looked for more answers and fout a lot of stuff about diat and hormones connections.. It turns out that white floor and sugar can really mess up you already meesed up hormones. So I stopped eating sugar and white floor and both hairloss and itching stopped. I also addaed 60 grams of protein to my diat (which is low in protein) No eggs though because egs whites cause severe hairloss (they block the absorption of Biotin). A All these measure were taken in November 2009.

Hairloss diminished and is very small now. But it’s there It’s still the same. I have less hair then I ever had… I lost about 35%. I don’t think it’s more then that…. The reason why I’m still not in 50% is that I have a huge regrowth (due to those herbs I suppose) … and it sort of slows down the whole process…. But what I have recently noticed is that each hair, each stand that gorwn instead of the old one is thinner and thinner… hair is breaking easily. My hair density is still high (I went to the computer diagnosis) but each stand in 20% thinner then it should be, (average diameter is 45 units instead of minimum 50). What I think about that??? I think Diane is messing up with my hair… and makes it thinner. And herbs cannot overweight the damage diane makes…. Although it helped in the beginning it is doing the opposite know. I am sure that diane did something with my system. I read somewhere that it interferes with mineral absorption and does something to your liver that also is connected to hair…

So I decided to stop… Not to stop at once… just to take fewer and fewer pills each month until I rule them out…. Maybe it will diminish the impact on my hair… although I am ready too lose hair… if this is the price.. just to stay away from the stuff… I am planning to go for US in a year to get my MBA degree and I DON WANT to take a bunch of pills to US and stress over hair each day of my life… ever if I have to pay the price… So I started looking for answers on the web, about coming off diane 35.. And saw your post. Pls tell me what you think Should I rule that stuff out gradually?

I plan to get off rogain on a latter stage… I don’t want to shock my hair with too many changes… And also.. I intend to be chemical free for the rest of my life. And most important never ever stress to much about idiots in my life…. If I think well, it’s the price I’m paying for messing with the wrong guys who just wanted to feel the pride of having a good-looking smart girl on their list.. so sad.

Waiting for your reply, and thank you for your posts... NowI feel soo much better about the whole thing... I am positive about getting off it, even at the expence of 50% of what I have left..... you hair will stop falling. Now that you are off diane all you need to do is give you hair a little helping hand of herbs. they are relatively cheap and the results will come in 3-4 weeks. I woulg give anything to be in you situation... you are only one step away from recovery. Believe me.

Elena

[DinDIn]

Elena, I tried writing for 2 days, What is your e-mail address? It wont load my replies..

[Elena85]

Hi Din, SOOO glad to see your reply... My email is [email protected]. Elena

[Guest]

Hi Just thought I'd do a quick update, mostly for myself as a kind of marker.

It's now been 4 months since I've stopped dianette and I'm trying to hang in there. My periods are averaging a 5-6 week cycle rather than 4 but hopefully it will sort itself out soon. In terms of my skin- it's gotten bad- not terrible, not great either but definately manageable. I'm just praying it doesnt get any worse as I've got my college graduation in a couple of weeks and I really need to see an improvement, I know it sounds shallow!

Basically just trying my best not to give into temptation to put myself back on dianette and trying to be positive about the fact that it hasnt been as bad as my last attempt to come off it.

Will post again when I reach 5 months off it, sounds stupid but it gives me a kind of goal to reach.

Good luck to anyone else that's struggling,
Laura

[DinDIn]

Goodluck to you Laura,

at least you didn't get hair loss and if you got to 4 months, I don't think you will. Please don't be tempted to go on this again. It is so bad for you. If you are concerned about acne, ask your derm about Tretinoin 0.1 % cream. It works really great for acne and you don't have to pump hormones into your body.

Keep us updated,
Din

[Guest]

Thanks DinDin

Don't know where you're posting from but unfortunately in Ireland you have to be refered to a dermatologist by a doctor if they feel they can do know more for you and even at that there is a waiting list and you can't just go and see them after that for new skin issues.

So in that respect I'm going it alone but I'll see how I go. I was never too concerned about the hair loss because I've come off it a few times in the past and I've never had that issue but at least thats a plus.

Will keep updating and hope you do too
Laura

[Guest]

I took Dianette for 18 months before my Doctor told me you are NOT SUPPOSED TO TAKE IT FOR MORE THAN ONE YEAR! It was the only pill out of 8 different pills i've tried that didnt give me any bad side affects and it is the only prescribed acne medication that worked for me. I came off it and had no problems, no side affects, periods returned straight away and although i still have excessive hair growth - there are other ways of controlling that (waxing, plucking, shaving dependant on area of body). I had no problems conceiving and giving birth to a healthy baby.

It sounds like a lot of people on this thread - even right back as far as 5 years, are blaming existing health problems on Dianette. I would advise people that yes Dianette is fantastic for acne and excessive body hair as long as you stick to the one year that you are allowed to take it. Taking it for longer may cause side affects when you stop. Like all contraceptive pills it increases your chances of breast cancer and blood clots. but people trying to blame things like miscarriage and hair growth on Dianette need to consider the fact that these are natural things that happen to millions of people who have never taken Dianette and it is highly unlikely that Dianette has any correlation to these problems whatsoever. The person who originally started this post clearly had problems before taking dianette and then tried to blame dianette for ruining her life. It's clear that she needed professional help with her health issues - not just to be thrown onto the pill!

I highly reccommend Dianette. But if you read through previous posts - most of the people who experienced problems with it - took it for way longer than a year - which is not reccommended!

[DinDIn]

Dear guest,

I understand you had no issues with this pill. You are lucky!!

I was on it for only 6 months!

I was healthy as a horse before that. I never took medications in my life and my hair was beautiful. I stopped this pill and got hair loss. And so did many many other girls whom I talk too, but not on this forum. If you do your research, hair loss from Dianette is actually quite common and it says so clearly on their web site, if you look there. There are reports of hundreds and hundreds of girls who got hair loss once they stopped Dianette. if you call your government, and go to adverse effects, you will find this out.They just don't publicize it because if they did, the pill companies would never sell their products. I talk to a lady now who took it for only a month and two months after stopping , she had major hair loss. Like me, she is into her tenth months of shedding now. I understand you like this pill and you had no issues, but it doesn't mean that it is safe . It causes many many unwanted side effects, and I post here because I want others to know what they are getting into and to make an informed choice. I wish i found thi ssite beforetaking Diane 35. It would have saved my life.

Din

[MillyM]

Hi

Have just found your story on the forum on the dreaded Dianette. I share your experience and I am still in the same position 10 years on and so is my sister and so is my niece who have all been on Dianette.

I was put on Dianette for PMS in 1999. I was put on it for 9 months without a break and despite complaining to the consultant that my skin was overheating on my face to extremes he kept on telling me to just keep with it a bit longer. I tolerated it for 9 months and then came off it.

Without weeks I was in work and kept feeling hairs floating onto my bare shoulders and onto the counter. I kept on saying to my friends that my hair was falling out. Overnight my periods stopped and it through me into early menopause, I have not had a period since.

For the past 10 years I have had hair loss. The longest period of continual hair loss being 21 months without a break. This has led to thinning all over called Chronic Telegon Effuvium. I just start to get some volume back and then bang there it goes again. I have been told that my hair has lost its growth pattern.

This has led to a total personality change from a person who was always outgoing to a person who has no confidence whatsover. I feel ashamed that I feel the way I do and feel awful for my long suffering husband and family who bless them just have got bored with the way I feel.

Before Dianette, I had no hair loss problems whatsoever. My sister and niece had no hair loss problems either and still continue to battle with hair loss as I do. My sister and niece also have facial and body hair problems (fortunately so far that has not happened to me), but I am so heartfelt sorry for you that it happened to you.

I total understand how you are feeling and like you, my sister and niece only wish that the medical profession would admit that Dianette did this to us all and then could maybe offer us some kind of antidote to put us back to how we were before this awful and dangerous drug ruined our quality of life.

I would love to here from you to see where you are up to with this problem. Again I hope that things have improved for you. Did you say that Dianette has been banned?

Would love a reply. Sincerely Dawn

[DinDIn]

Dawn,,

I am so sorry to hear your story. Wow, 10 years of this? I couldn't imagine that. And you still don't have a period after 10 years?? How old are you, if you don't mind me asking?

I know, Dianette is an awful awful drug and I wish I never took it, but too late now. I wish I could go back in time and change everything that happeend, but I can't. Its too bad many women have to suffer like that.

From what I hear, in the US it is banned, but one could still order it on line. So many women still use it.

How come you didn't have a period for 10 years? Did you ever get your hormones checked? Do you maybe have PCOS?? I can't believe that you have had hair loss for 10 years, wow, that sounds really scary.

As for me, it is 9 months of hair loss already. I have to say that it is not like at first. The first two three months, I lost a ton of hair, maybe half.. but now it has tapered down and I still lose some when I wash my hair, but not like before. For some, what i am losing now would be considerd normal, but for me, I know that it is not. I am also losing eye lashes . I lost half my eye lashes and they still seem to fall half. This is all because I took this evil pill for 6 months. My hair was so beautiful before and I was so healthy. I can't believe that this happeend to me.

I am hoping that thi swill get better. My hair is very thin right now and I hate the way I look, but I try to remain positive that my hair will grow back. I can't describe to you the pain and suffereing I had the past 9 months. I never want to re live through this again. It destroyed me. I know of so many women who suffer from this pill. So many had hair loss.

Did you ever use products on your hair to make it grow? do your sister and neice still experience hair loss? They might have PCOs as they have facial hair and body hair. And usually PCOS would cause further hair loss.

Hope to hear a reply,
I am so so rry to hear your story,
Din

[DinDIn]

Dawn,

Did you say that you also took it for 9 months without break? Does that mean that you take it every day for 9 months without stopping to get a period? Usually you take 21 pills, wait for a period and then start again. Did you get any periods while you awere on it??

Din

[DinDIn]

Monthly update!!!

I am now 13 months off from Diane 35(Dianette) , and a little over 9 months of shedding.

I am still losing hair, although I think that maybe my shed had decreased. I am not sure though.. because it could be shedding less one day and start all over again. It is hopefully getting better. My hair shed is light, but still not normal.

I am also losing eye lashes. I have lost more then half and each day one or two or more come off.

I don't think I have much re growth . but only time will tell.

My biggest issue is the scalp itchyness , I don't have it every day, but it is horrible when I have it. I'd say I have it about 4 or 5 times a week.

This had been a horrible horrible experience. I don't wish this upon anyone.

So be careful taking this pill. I was so competley normal before this, but am hoping that all will be well in a few months and that my hair will come back.

I will keep posting monthly, for others who are going through this,


I think I have lost 50% of my hair, very sad
Din

[MillyM]

Hi, in answer to your question, yes I did get put on it for 9 months without any break at all despite me questioning the consultant who told me that it was only temporary. I did not have any periods at all for the 9 months the skin on my face was burning and I kept phoning the consultants secretary asking why and she said that he said to hang on in there. I went back to see him as I started to feel quite strange. He took me straight off it and did not taper it at all (him being a consultant I thought he knew what he was doing). I have not had any periods since then and have had loads of related health problems i.e early menopause, palpitations, temperature intolerance, migraines, hair loss, cloasma on my face (confirmed by dermatologist that this was caused by the Dianette when I was experiencing the burning sensations on my face). Today I rang Beyer Schering who manufacture this drug and told them the problems I am still experiencing 10 years on and they said they will get to me within the next two weeks after investigating this issue. I will let you know when I get a reply. Once again thanks for your interest.

[DinDIn]

I am so sorry to hear that Millie.

I too called the Bayer company when this happened. They NEVER called me back, I spoke to several people there and they promised someone would call me. finally I was mad and threatened to sue them, but they just laughed at my face. They really couldn't give a damn. They know how bad this product is but they make so much money off of it, they will never admit that it is harmful.

Reagardless, let me know how it goes.. how old are you by the way? have you ever had your blood levels checked to say you are in early menapause?/ Iam really sorry to hear it affected you that badly.

Din