dianette feels like it has been a total horror stor

[Guest]

hello dindin

how r u??? i hope u r doing well. i am so sorry i wasnt able to reply asap...i was sooo busy with work. i also do hope tulip will reply to you already. just finished taking a bath. and i spent most of the hour picking all the shedding hair. i am just soooo tired of all of this. well i have a long month to wait..this could be going on for months and months.

so what did the GP say regarding your hair loss...what needs to be done? shall we take medications for this. i also dont want to go back on the pill..it is really tempting me i say with all honesty...but i am soo much happier without the pill and i feel that i have all my life back without it... i will wait this out..afterall it has only been 4 months since stopping the pill. =)

how r u dindin?? =)

[DinDIn]

Tulip.. I wrote you a post above... please reply... it will mean so much..

Anne, I am going to see the endocronologist tomorrow. I will write and let you know what happened tomorrow night. I doubt they can do much, but we'll see what they say. The way I see it, Diane 35 is an anti androgen drug. It supressed all of our male hormones while we were on it. When we came off, our bodies are no longer used to the male hormones and that is why the hair is falling out. But is this going to be for the rest of my life?? when will this stop??

It has been 5 months for me. Although the rapid shed where I lost half my hair only lasted for about 8 weeks, I still lose hair every day now when I comb it or wash it, and my scalp is till itchy, tight and irritated on and off. This is NOT normal for me, at all. I don't have PCOS.. and my male hormones were always on the low side of normal. So when is this going to stop?? I am not doing so well. I hate the way I look. I barely sleep anymore. I think because I am stressed out about this, I have insomnia. I wake up at night and when I do of course this nightmare comes back and I think about it and it upsets me and I can't go back to sleep. I have been barely surviving in the last 5 months. I am here, but I am numb. I can't enjoy anything anymore. This has taken my life like a storm. I just want this to go away. I used to have such beautiful shiney hair, and there is nothing now. Oh why why did i take this crap?? I really cry about this every day. What if this goes on forever? What if this does not stop? What if my hair does not grow back? I don't think I could live like this. I just want to have a normal life again. I think that this is a really high price to pay for taking a birth control pill.
Anne, How are you doing?? Is it starting to show already? I am so embarrased to leave my house. I hate the way I look now. Lets really hope that next year this will be a joke to us and we will be able to laugh.

Tulip_83 .... PLEASE write back,

Din

[DinDIn]

Tulip_83... I left you a post.. please reply....


So I went to see my endocronologist today. She went through my history, went through all the blood work and said that I have absolutly nothing and that I am healthy as a rock. My male hormones are on the low end of normal, so they are very low..no way it will cause hair loss. I have normal thyroid and normal hormones. I do NOT have PCOS(polycystic ovarian syndrom). She said that it is a reaction from stopping the Dianette(Diane 35) and that most likely this will stop soon . She said I went trough the worst already .. so to just hang on. She does not want to put me on anything, what is the point? She said going back on The pill will just make it happen again when I stop and that if she gives me any anti-androgen drugs will not help me either because the minute I will stop , the hair will fall again, so you don't want to give your body any meds if you really don't need it. She said that usually when you lose hair, it takes 6 months for the cycle to start again from the time that you lose your hair, so regrowth should happen at about 6 months of going through this, although I can see regrowth already.. it's just a matter of it staying on my head...

I told her that I thought I had PCOs because I tend to break out sometimes.. I don't have acne.. just some stupid pimples here and there and that is why stupid me took the Dianette (Diane 35).. but she said that there is no way I have PCOS especially since I am very thin , I have no cysts in the ovaries, no facial hair and no signs whatsoever of any PCOS.. I wonder if there is a relationship of being thin and losing your hair from the Dianette. The other specialist I saw said that it probably happened because I am thin and that hair does not like skinny people... but hey.. I had beautiful hair before the Dianette and I was skinny, so it doesn't make sense.. but who knows..

She said to hang in there... it will get better. So I am hanging in there but losing my mind. She also said it is a good idea to change shampoo every three months so I went and bought a new shampoo although I don't think it will make a difference. Seriously, I think the past two weeks have been worse. I lost more hair then usual. Oh.. when will this nightmare stop???? She said I don't have male pattern baldness or AGA, so at least that's good. I guess it's a waiting game here. It is 22 weeks for me at the end of the week. Damn it, Just stop already then I will be so happy!!

Anne, how are you doing? I guess this will be a bad year from now, but at least it will be over soon and one day soon we will get our hair back. Such a high price to pay for taking a stupid birth control pill... If I only knew..

Tulip_83... Please please answer my post,
Thanks,
Din

[DinDIn]

I am now 9 months after stopping the Dianette(Diane 35) and things are not so good.

I am still losing hair each time I comb or wash my hair... not as much as before though... but still losing. The thing that is really driving me crazy is the itchy tingling burning scalp. I think I am going to go crazy if that does not stop. I can't believe how much I am suffering and all because I took this pill for 6 months. I lost 60% of my hair if not more and still losing hair. My life is not normal anymore. I barely sleep at night, I think this whole thing is really stressing me out. I don't know what to do already. I just want this nightmare to stop!! When will this end????

Din

[Guest]

Oh god I really am sitting here terrified! Have been on dianette since I was 14. Am now 21 and not once during that time was I informed of any risks, in fact I was told age 14 that Id be on it until I was 21! A year ago I decided to give my body a break from it and had the usual horror story. I gave into pressure and went back on the pil as my doctor said it was the best one.

I since found a lump on my breast (not suggesting it was caused from dianette before I freak anyone out!) I went to a college doctor after stupidly waiting months to get it checked out and she was completely horrified when I told her how long Id been on it. Was the first time Id ever been told it wasnt for long term use and I really felt scared by some of her comments.

The lump looks to be benign but speaking to her has made me decide to stop taking it again. Its only been a week and Im dreading whats going to happen. Also doesnt help Im in the middle of studying for exams. Besides from skin issues Im also afraid that the damage is done and my body might be ruined.

Sorry for the long post. Dont really know what advice Im looking for. Anyone any tips about combating the dreaded ugly cysts that are sure to make their presence known?

[DinDIn]

Hi guest,

Good for you for coming off this evil pill. If you look at the monogram in the package you get this pill from, it clearly states that you should not be on this pill for longer then 3 months. I have no idea why most practioners never let us know that this pill is actually very dangerous if taken long term. Maybe they don't know.

Don't give in this time and go back on this pill. Give your body the chance to rid of all the bad chemicals you were taking for so long. It will be hard at first, bt you may be one of the lucky ones who get no withdrawl symptoms at all. Unfortunately as you can see, I wasn't that lucky. And the funny thing is, I didn't even need to go on Dianette. I only had one or two pimples throughout the month. My skin was not bad at all, but stupid me wanted to make it better. My skin coming off this pill isn't too bad. The first few months coming off of it I had a few breakouts, but I use a retinol cream.. it's called Tretinoin 0.50% and it is amazing in clearing the skin. I wish I knew about this cream before going on the Dianette. Whenever I feel a pimple coming.. i put this on for a few days and it disappears, so the acne is not my problem coming off it, its the hair. I don't have PCOS and I don't have high male hormones. I am totally healthy and look what happened to me. I lost more then half my hair and am struggling everyday. My life is really a nightmare right now. sometime I look at my situation and I have to laugh, because who would have thought I would suffer so much just by taking a birth control pil. Lesson learned, never take things into your body without doing your own full research on it. And from the research I have done.. Dianette(Diane 35) is the nastiest thing you can put in your body. I think anyone who takes it for more then a year is at risk gor really bad things that can happen. It really should be banned, only the drug companies make so much money from this, they will never ban it. So us women need to be smart, and really pay attention and question anything that is ever prescribed to us.

Good luck to you. I hope that nothing bad will happen to you during your withdrawl period. And never go on this again. Let us know how you are doing,
Din

[Guest]

Thanks DinDin,
I only lasted 5 months last time before the side effects were so bad I felt I had no other option but to take it again. Here's hoping I can be stronger this time and good luck to everyone else. Will report back on my progress.

[DinDIn]

Hi Anne,

how are you doing?? Haven't heard from you in awhile. Hope all is well,
Din

[Guest]

Hi Din,

Sorry I haven't replied earlier - I don't really come on here anymore and am only back on here by chance.

I never had any real tingling or itching with my scalp no...or not that I can remember anyway. And yes, it is likely that the hair loss did last longer but it definitely had stopped by the Christmas. You must remember that everyone loses between 150-200 hairs a day and I do think that, after excessive hair loss, you do become a bit paranoid about what is actually normal. I remember I was convinced for ages that my hair was still falling out then really it wasn't! I still get a bit panicky now. I think it is promising what the endocrinolgist said and I think it is just a waiting game for you. The hair will start to grow back but it will take a long time. I first started to notice it when I pushed my fringe back and you see these tiny, short baby hairs sprouting through from your forehead.

I know it is so so hard what you are going through but try to stay as positive as possible so try not to put any extra strain on your body through stress. Remember, the really bad shed has stopped now...it will never be as bad as that again.

If you need to contact me again then please just use this email address ka_holmes@hotmail.co.uk

Katy

[DinDIn]

Thank you so much Katy, I e-mailed you,
Din

[ill!]

hi there im new to this forum and cant quite believe what im reading!! I stumbled upon it quite randomly as i just feel something is not right hormonally/emotionally within my body. I am 25 and had acne since about 12yrs old,periods were always regular and no depression etc pretty healthy overall except acne which made me miserable and no confidence, went on all anti-biotics and eventually roaccutane, this was amazing and totally cleared my skin, my gp put me straight onto dianette when i finished my 9month roaccutane course, she said this would 'protect' my skin and stop acne coming back...now in time i experienced terrible mood swings, mostly low mood, crying sad and angry, then my periods practically stopped, feeling of tight chest/anxiety ,LOTS of hair falling out(i thought this was stress or something!) gastro(stomach)issues as well. I went to gp as had a suspicion it could be the dianette as i have never reacted well to any pill...she said it was impossible that it was dianette as id been on it at least 6months by this time and it wouldve showed sooner!.Anyhow my health worsened and i eventually took myself off it about 1year ago, since then ive just generally felt really not too well, again anxiety symptoms,and lots of stomach issues hair loss seems to have stopped but periods are really irregular in fact ive only had 3 since coming off it!! I know all my symptoms are probably caused by hormonal imbalance?..Not sure what to do next ive been feeling SO ill and is a relief to come across this and to think that maybe it really is all caused by dianette!! So shocking though..it should be banned!! Any tips on how to rebalance my hormones?..should i see a specialist endo or will this sort itself out?..I used to hate having periods now i want them as then i will know my body is healthy again!!! Thanks ladies!

[DinDIn]

Hi Ill,

Sorry to hear about what you were going through, but good for you for coming off the Dianette. You are lucky that the hair loss stopped, that's a major plus. The rest will work out on its own, just give it time. It is a good idea to go see an endocrinologist just so they can do proper blood work and see what stage you are at. Maybe you have PCOS or another hormone imbalance?? It is very commin not to get a period for a while after stopping the Dianette. I have a feeling that this pill really really screws up with our bodies. I am sure that you are ok but still go see the endo just to be on the safe side. The main thing is that you are off the Dianette so that evil pill can no longer harm you. I feel so bad for all the girls who take it right now and have no clue how bad it is for them. It is important to keep this thread going so that women can eventually read this and make their decisions of wether or not to stay on it or come off.

I will continue to post here on my progress. I am not even suer if my hair is still falling out. I lose a couple of strands when I comb it and when I wash it a little comes out as well, but I am not sure if it is normal or not. I lose around 10-15 hairs when washing. I know that they say 50-100 is normal every day only I never lost hair before when combing, so I don't remember now if it is normal for me or not. I still have the itching burning scalp which tells me that something is still going on. However, I have a feeling that it is because I am so stressed out over this. I find myself getting really panicky when the itching starts, and then I get upset all day and I don't sleep all night. I Have a feeling that because this whole episode with losing my hair really disturbed me.. I feel anxiety. However.... never go on anxiety meds because we all know that that causes even more hair loss. Instead, I decided that from now on I will not let this bother me. For a few days now ... I am drinking cammomile with lavender tea 3 to 4 times a day. The lavender is supposed to calm you, and this is helping me. I was able to sleep for teh past few nights( I drink it before bed as well) and I don't have the sensations on my head for the past few days.. although it could be a coincisence.. it might all come back... but I am hoping for the best. so far, drinking tea is helping me. I never was anxious in my life!! I was alswys such a healthy person. This is all because of the Dianette(Diane 35). But I will get through this... I will not let this pill destroy me anymore.


Ill, try drinking the cammomile lavender tea. You can get it in any health food stores and it helps so much!!!

Goodluck, let us know how you are,
Din

[DinDIn]

Hi Again Ill,

I forgot to mention,

the hair loss you experienced is for sure due to the Dianette. I have come across many women on other forums where they actually lost their hair once taking the pill. From what I heard, if you take the Dianette (Diane 35) for a long period of time, you may notice over time that your hair has gotten much thinner. Over the years, you will just lose hair, but not rapidly.. so you wont really notice it. Dianette controls the sebum your body makes. The anti androgens don't make a lot of sebum and that is why your skin may seem less oily. It may be good for the face, however, not having oil for your hair follicles for a long time eventually kills your hair and it falls off, and at that point I don't think new hairs come out. I read about this somewhere. So the bottom line is... Dianette is NOT good for you at all. It may give you good skin.. but again.. that is only while you are on it. And it will destroy your hair.. so Dianette is the worst pill out there.

Just as a warning, I heard that Yasmine and Yaz are just as bad as Dianette, and they also cause hair loss when you discontinue them... so stay away from them!!!

Anne, are you ok? Let us know how you are,
Din

[Sunflower1984]

Hi everyone,
I just stumbled across this forum while reading up on dianette as an acne treatment. I'm 25 and after many years of unsuccessful acne treatments (minocin, zinneret, dalacin), went to see a doctor with a special interest in dermatology (not a dermatologist). She prescribed Dianette and told me that it would completely resolve my problems with little or no side effects. I also suffer for IBS, stomach problems and have also been treated for depression in the past. She told me that Dianette would even help my IBS. I just wanted to say how sorry I am to hear what you have gone through, and to thank you for posting your experiences. I was extremely uneasy and upset about going on the pill (as I don't think anything that interferes with the natural functions of the body is a good thing) but now, I am resolved that I will not take it. Thank you and I really hope that things get better for you. All the best.

[DinDIn]

Hi Sunflower,

Good for you for staying off this evil pill. It will ruin your life!!!! Taking those pills are bad for us!! I learned the hard way.

I am glad though that my posts are helping other women. That is why I am posting here and keeping updates of what is going on.

Well, my hair loss from Dianette started on November 23rd 2009 and I think that it is almost stopped. My scalp almost went back to normal. The itchy burning tingling scalp have subsided and I didn't lose any hair yesterday when I washed it.. so the hair loss lasted almost 24 weeks. And I have to say, 24 weeks of pure hell!!

I don't look that bad. I look mostly the same, but I have no volume to my hair. I don't feel comfortable wearing it down, so I wear a pony tail all the time. But people who see me who have not seen me in a long time, will never tell the difference. The first 8 weeks were bad, because you could actually see my scalp if you looked at my head from the top, but I think it filled in since then, cause you can't see it anymore. I do see regrowth, but I need to see a lot more compared to what I have lost.

I will keep updates on what is going on. To anyone going through this.. th ehair loss will stop!! Don't stress over it, as hard as it may see, it isn't worth it. It will stop eventually. And if you are new to these boards and are wondering if you should take Dianette or Diane 35... PLEASE DON"T! It will ruin your life. You may be happy it first with beautiful skin, but it is not real. Over time.. it will kill your hair.. and when you get off it, all hell will break . Just stay away from this. This is the worst pill out there. And stay away from Yasmine as well. It is almost the smae as the Dianette with horrible side effects and hair loss as well.

Good luck to everyone, I will keep updating,
Din