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dianette feels like it has been a total horror stor

Health: Get slim, Feel fit, stay Healthy
Act now regain your life.

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674 posts • Page 1 of 45 • 1, 2, 3, 4, 5 ... 45
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dianette feels like it has been a total horror story for me

Postby MNardY » Mon Jan 24, 2005 2:33 pm

Life has gone rather downhill of late. I never had acne as a teenager and in my early 20s started to develop cystic acne out of nowhere. Was prescribed dianette by a dermatologist after antibiotics etc did nothing. Dermatologist never mentioned any connection with possible hormone problems and in my young naivety, never questionned anything.
At this time I was an attractive bubbly young woman university graduate dabbling in a singing career. About two months after I started taking the dianette I noticed my hair had noticeably thinned-this totally freaked me out and led to a nervous breakdown and a total personality change from bubbly to an anxiety depression filled mess leaving me unable to work for 6 months. The hair thinning did not seem evident to others but to me it was obvious and led to people including family,friends and boyfriend believing it was all in my head. I remained on the dianette not totally sure of the connection between dianette and the hair thinning but too scared to come off the dianette in case the cystic acne came back- By the way, my skin had beautifully improved on the dianette with just the usual pre period type spots. My personality never really recovered from the experience but I gradually got better and the hair thinning, though not reversing did not seem to get much worse- Anyway, fast forward 9 years to age 32 and 2002 - with skin much improved and still on the dianette I was now desperate for a baby- came off the dianette scared stiff the acne would return and hoping that I would fall pregnant without too much difficulty as periods had been regular prior to taking the pill . 9 Months later was still waiting to get pregnant, though periods had returned ok with no problems. By then, acne was slowly but surely returning- And additionally, I started to notice excess hair appearing- everywhere- upper lip (this had always been something of an issue as I am a meditteranean looking woman of jewish extraction) , coarse hairs under chin and increasing very coarse hairs on cheeks and sides of face worsening- Hair growth worsening on legs where shaving now had to be daily or thick stubble appeared by the next day. I got pregnant in the ninth month but had an early miscarriage at 6 weeks. This has been followed by two more miscarriages, one at 11 weeks (died in the womb after not growing) and another at 5/6 weeks. Two and a half years after stopping dianette-here is the situation: increasing and not stopping hair loss from head partic when I wash my hair and combing, acne getting worse-partic on chin which is now very bad lumps,little spots, cysts, pimples-, excess hair continuing to be a real issue-everywhere including mad bikini line, inner thighs, nipples and some on chest- Losing faith in GPs who say I can't have pcos as scan found no cysts, blood tests show not pcos and I am of normal weight. SO WHAT THE HELL IS GOING ON HERE???? Can see no end in sight at present- Am due to finally see consultant re miscarriages- gynaecologist but he previously just said that it can't be pcos. I am wondering whether dianette has made things a lot worse and bearing in mind I was on it with no break for 10 YEARS!!!!! Am wondering whether it has well and truly screwed up my chance of a child and I am almost 35 now. Confidence at an all time low. Would welcome contact from people with similar issues and any answers- I feel so let down by the medical profession- WHO CAN TELL ME WHERE TO FIND INFO ON THE DANGERS OF DIANETTE AND WHY IT IS BANNED? I would not go back on it because I also developed three breast lumps after dianette. HATE TO SCARE YOU ALL BUT JUST LOOK AT MY SITUATION- THEN AGAIN, TO HAVE HAD THE ACNE FOR ALL THOSE YEARS WOULD HAVE BEEN A NIGHTMARE TOO!!!!
i HAVE NO ANSWERS- AM NOW SEEING MEDICAL HERBALIST AND HOMEOPATH HOPING THEY CAN DO SOMETHING BECAUSE GOING BACK ON THE DIANETTE CANNOT BE THE ANSWER. ALL REPLIES WELCOME-
WOULD BE HAPPY TO EMAIL BUDDY WITH ANYONE GOING THROUG SIMILAR STUFF HERE. P.S ANYONE HEARD OF RECURRENT MISCARRIAGE/INFERTILITY AFTER MANY YEARS OF DIANETTE USAGE- TALK ABUT US BEING GUINEA PIGS. :(
MNardY
 
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Postby Guest » Thu Jan 27, 2005 10:36 am

I had horrible experiences with Diane/Dianette,i was a raving beast every month,threw cutlery against the wall,started fights with my boyfriend etc.
Once i got off the pill,all this stopped.My mother read an article in the newspaper that said there might be connections between Diane/Dianette and infertility.You have proven that you are not infertile and miscarriages happen,regardless of age.True,the older you are,the chance of having a miscarriage increases,but it is only an estimate on averages; gyno's now say a woman can have a baby till the age of 42 without any major complications.Concerning your hairgrowth,it isn't a too uncommon thing.
If it takes on unusual proportions,i'd suggest to look for info on hirsutism.
For your skin,look up Yahoo groups that focus on acne.Yahoo groups is a goldmine for finding information and help on numerous topics.
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Dianette withdrawal

Postby Guest » Thu Feb 03, 2005 11:09 pm

I'm 26 and I've had problem skin since I was 9. I had problems with random periods and spent most of my youth asking doctors why I was overweight, spotty, flat-chested and hairy. Yup, nightmare school days and it took the 9th doctor I saw to suggest there might be something wrong with me. she sent me straight to hospital to have a scan and 2 weeks later I was back in hospital - having a whole ovary removed! I had 1 big cyst growing in there so my hormones have been messed up all my life. She put me straight on Dianette and all was well. I'd been on the pill for over 10 years and another doctor said I should come off it. So I did. He didn't suggest an alternative so I'm finally settling into a regular monthly pattern. BUT.....Its like I'm regressing back into the teenagery world of spots and greasy hair. Its horrible and 6 months since stopping taking Dianette - its just getting worse! I totally sympathise with anyone giving up Dianette. But what can be done or even taken to counter the effects?
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Dianette

Postby tessaB » Fri Feb 04, 2005 10:06 am

I so sympathise with problems re dianette. I was prescribed dianette 3 years ago for PCOS. I started taking it for irregular periods and the problems I was experiencing with excess hair. My skin was OK at this poingt. I tried to come off it a year ago and my whole body went crazy. My sking was terrible and my hair greasy within 7 hours of having been washed. I want to come off it as I realise that it essentially just hides the symptoms of PCOS and doesn't actually do anything to help them long term. Infact, if you ever want to come off it there's a danger of your symptoms becoming worse. Went to see my GP and asked for alternatives and she told me to stay on it. I said no and asked to try metformin which can help with irregular periods and excess hair growth. Have now just come off dianette and started metformin. We'll wait and see. I'm very nervousa about what will happen over the next couple of weeks but am determined to sit it out. Have also read "The PCOS Diet Book" which explains how to combat symptoms through nutrition and lifestyle. It's not a quick fix, but I'm hoping it will help long term. However, I'm quite angry that I've constantly been told that Dianette is my only option and never warned to what it could do to my body. :(
tessaB
 
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Re: Dianette withdrawal

Postby Guest » Fri Feb 04, 2005 3:08 pm

. wrote:I'm 26 and I've had problem skin since I was 9. I had problems with random periods and spent most of my youth asking doctors why I was overweight, spotty, flat-chested and hairy. Yup, nightmare school days and it took the 9th doctor I saw to suggest there might be something wrong with me. she sent me straight to hospital to have a scan and 2 weeks later I was back in hospital - having a whole ovary removed! I had 1 big cyst growing in there so my hormones have been messed up all my life. She put me straight on Dianette and all was well. I'd been on the pill for over 10 years and another doctor said I should come off it. So I did. He didn't suggest an alternative so I'm finally settling into a regular monthly pattern. BUT.....Its like I'm regressing back into the teenagery world of spots and greasy hair. Its horrible and 6 months since stopping taking Dianette - its just getting worse! I totally sympathise with anyone giving up Dianette. But what can be done or even taken to counter the effects?


Waxing
Laser
Nutrition
Supplements
Skin treatments
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Postby Guest » Fri Feb 04, 2005 5:51 pm

With regards to what can be done to counter the side effects of coming off dianette, I'm taking Metformin. It's good for women with PCOS but is a relatively new treatment. However, it has been used to treat Type Two diabetes for many years in the UK. It's good for skin, weight loss and excess hair growth. I've started on a small dose as my GP warned me that it can cause an upset stomach, but so far I have had no problems. I'm to up the dose in a week. Studies have indicated that Metformin can also induce ovulation in some women, but is most effective when combined with Clomid. As far as I'm concerned, if I have to sit out the side effects for months then that's what I have to do. I don't want to go back on Dianette because I feel it's screwed up my body. I would like to see a nutritionist, but simply can't afford it at the moment. I'm 25 and have been deal with this crap since I was 13. I want to really make an effort to sort it now as would like to have kids in a couple of years. Would like to email buddy with women going through similar stuff . . . : :(
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dianette

Postby jens » Fri Feb 04, 2005 10:46 pm

I have been given the suggestion by my GP to try dianette to combat hairloss I am experiencing, I have a male pattern of baldness (lossing hair at the front). I am 40 and unsure now I hear these horror stories?
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Dianette

Postby Guest » Sat Feb 05, 2005 1:45 am

I too have been on dianette for about 9 years - almost continuously. I started on it in my teens when I had acne, and it totally cleared up on dianette. I asked my doctor years ago if it was safe to stay on because I remeber hearing something about it not being good, but my doctor assured me whilst 'it was not licenced for long term use', its only because it hasn't been tested long term, and would be as safe as any other pill. I was a bit scared of coming off it in case my skin went back to how it was so stayed on it. A friend also on dianette long term and looking to try for a baby was told she shouldn't have been on it for more than a few months, so I went back to the same doctor and he took me off it. So far still no period since (have done 2 preganacy tests) but the acne has come back worse than ever, not only on my face but on my chest and back which has never happened before. I was considering going back for the dianette but after having a look on the site I'm not going to bother! it has freaked me out reading all the horror stories, so many sites say you shouldn't be taking it for more than 3 cycles, and switch to a lower dose pill. The ones suggested to help your skin but not be as harmful are ovysmen (the one I have been prescribed), Marvelon and Cilest. Have also seen a times article which says a natural alternative is Saw Palmetto. Sorry this is a long rambling message but I am really angry that I was kept on dianette for so long without knowing the consequences. Just wanted to stop other people making the same mistake!
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Postby Guest » Sat Feb 05, 2005 6:47 pm

I had no idea that there were any problems with Dianette and it was only when speaking to a colleague on Friday that she mentioned it being banned. I decided to search the net for info as I too have been on it for 9 years and I am extremely frightened by what I have read. I just do not know what to do. This has to be publicised as there are thousands of unsuspecting women out there. I am in the position where I hope to be married and be thinking about children within the next year. This sounds like a nightmare. WHY DID NO-ONE TELLL US ANY OF THIS!!!! MY GP IS A WOMAN!!!!!
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Postby Obvious » Sat Feb 05, 2005 11:12 pm

. wrote:I had no idea that there were any problems with Dianette and it was only when speaking to a colleague on Friday that she mentioned it being banned. I decided to search the net for info as I too have been on it for 9 years and I am extremely frightened by what I have read. I just do not know what to do. This has to be publicised as there are thousands of unsuspecting women out there. I am in the position where I hope to be married and be thinking about children within the next year. This sounds like a nightmare. WHY DID NO-ONE TELLL US ANY OF THIS!!!! MY GP IS A WOMAN!!!!!


Because they are just that - General Practitioners not specialists. You are better off researching your medical conditions on the internet then talk to a doctor about them. The GP has a general knowledge about many illnesses & will precribe supposedly 'tried & tested' medications, but they won't know about new information & treatments.

The other day I went to my doctor & I noticed she had internet access & was on google search page - says it all really !

BTW My ex gf suffered from acne, had pcos & so was prescribed dianette. She took it for about 1 year. She had terrible mood swings & would burst into tears at the drop of a hat. In the end she came off it & didn't take any pill. Her body settled back into it's natural rythm & her acne returned. But I'd much rather have her with acne (which incedentally I never noticed & it certainly never bothered me) & happier than on dianette and depressed.
I still miss her.
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Postby BennJones » Sat Feb 12, 2005 9:53 pm

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Postby strawbs » Tue Feb 15, 2005 2:11 am

I had practically constant periods when I was on dianette it was terrible. And mood swings is an understatement I had a personality transplant I was possessive moody whiny constantly in tears, throwing things for no reason.

Then I started to get the leg cramps after one night when they kept me awake all night and i thought I had meningitis and was scared shitless I went back to the doctors and they took me off it because they thought it was the beginning of thrombosis. I didn't go on it because of my skin I used it to regulate periods but once I came off it I noticed I had acne on my chest (its not too bad there) and on my back (its quite bad there) and I've never been able to get rid of it since. These weren't problem areas before. I am one of these rare people that can't take any pill but I certainly wouldn't ever recommend this one. Like many of you I took it for several years which does worry me.
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Postby Guest » Sun Feb 20, 2005 2:29 am

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EH????

Postby Macros » Wed Mar 09, 2005 11:04 pm

Oh my ........ I just stumbled on this site as I searched for the effects of tanning beds on dianette users. I have been on dianette for 11 years and I have never heard of anyone having fertility problems because of it. I'm VERY worried now because I'm starting to think of trying for a family. I can't find any references to the newspaper reports or medical journals that have been mentioned as cataloguing such problems on the net. Does anyone know where I could find such a report?
Is there any chance that some of the people who are finding fertility problems have excess hair and/or pco's? The hair and pco's are often a reason to prescribe dianette, so maybe it's the underlying health problems and not the dianette causing the problems? Someone make me feel better!
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Postby Guest » Tue Mar 15, 2005 2:21 pm

I am 26 and have taken Dianette on and off since i was about 17. The difference in my incredibly oily skin was dramatic the first time i took but every subsequent time i have taken it it has only made the slightest difference to the oil production and hairiness, which suggests to me that your body can become 'immune' to the anti-androgen effects.
My doc says i can't have PCOS as 2 ultrasound scans reveal no ovarian cysts, although i read that you don't have to have ovarian cysts in order to have PCOS (oddly enough). I'm not convinced though, as i do have other classic symptoms such the aforementioned oily skin/hairiness (although this could be genetic - i have Jewish roots, does anyone know if these symptoms are common among Jewish people?) and irregular/absent periods (including one time when i didn't menstruate for a year!) and a family history of diabetes.
I'm currently on Dianette again after an absence of a couple of years but am thinking of stopping, in light of what i've just read. I've been to see consultants and docs SO many times on thi issue and feel ignored
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