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I honestly don't know what to do anymore.. the only thing I have left to try is Minoxidil and I'm absolutely terrified of taking it. Have you tried taking Rogaine yet? How the hell do I get rid of CTE?
Shedding Not Stopping After Change Of Birth Control
- Thread starter Laylaa
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I honestly don't know what to do anymore.. the only thing I have left to try is Minoxidil and I'm absolutely terrified of taking it. Have you tried taking Rogaine yet? How the hell do I get rid of CTE?
Hey ladies,
I was reading your postings, they could be mine.
I started losing my hair after the birth of my second child, during the pregnancy and already before, I had acne so I went on the bc Diane35 (I had taken the same one for years on/off never had trouble)
Maybe a couple of months after I started the bc my scalp started itching & my hair started to fall, I was 36.
Fast forward 10 years and my hair loss hasn't stopped. I lose just like you on the top and temples the most but also diffuse, there is no day where I dont lose 100 hairs, washing days on bad phases 400-500 on good phases 150-200, good phases are maybe 3 months a year. Just like you I restarted the bc, it did help for exactly a month but I was too afraid to stop and have a major shed so it's been 4-5 years on it, I am 45 so soon I will have to stop and then it will be the end of my hair. I had such great hair that random people would compliment me, hairdressers too, I do not have a big parting yet, but 70% of my hair is gone, it's thin and lifeless and I haven't wore it open for the past 2 years at least. I did take any vitamin, tests, treatments you can think of, I have seen experts, even Dr. Rolf Hoffmann who is part of the replicel team, I don't know how shiseido will do but he told me that it would take at least another 10 years for a "cure" and it's 3 years ago that I saw him...went last year again but there is not much he can do for me, they all look at you and think it's just hair.
I tried minoxidil unfortunately I am allergic to it, did the Kerastem treatment, tried neogenic, tried progesteron topical, you name it. I can see myself buying a topper soon or dying, dying is not an option, for my kids. So I can relate to your pain very much so.
I was reading your postings, they could be mine.
I started losing my hair after the birth of my second child, during the pregnancy and already before, I had acne so I went on the bc Diane35 (I had taken the same one for years on/off never had trouble)
Maybe a couple of months after I started the bc my scalp started itching & my hair started to fall, I was 36.
Fast forward 10 years and my hair loss hasn't stopped. I lose just like you on the top and temples the most but also diffuse, there is no day where I dont lose 100 hairs, washing days on bad phases 400-500 on good phases 150-200, good phases are maybe 3 months a year. Just like you I restarted the bc, it did help for exactly a month but I was too afraid to stop and have a major shed so it's been 4-5 years on it, I am 45 so soon I will have to stop and then it will be the end of my hair. I had such great hair that random people would compliment me, hairdressers too, I do not have a big parting yet, but 70% of my hair is gone, it's thin and lifeless and I haven't wore it open for the past 2 years at least. I did take any vitamin, tests, treatments you can think of, I have seen experts, even Dr. Rolf Hoffmann who is part of the replicel team, I don't know how shiseido will do but he told me that it would take at least another 10 years for a "cure" and it's 3 years ago that I saw him...went last year again but there is not much he can do for me, they all look at you and think it's just hair.
I tried minoxidil unfortunately I am allergic to it, did the Kerastem treatment, tried neogenic, tried progesteron topical, you name it. I can see myself buying a topper soon or dying, dying is not an option, for my kids. So I can relate to your pain very much so.
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Oh god this just keeps getting worse. Isn't there anybody out there for whom this constant shedding stopped at some point?
Do I understand correctly that you started losing your hair while you were pregnant with your second child? And after pregnancy you went back on Diane35 and it got worse?
No, it started a couple of months after giving birth.
I’ve heard about it, it’s where they inject essential vitamins directly into the scalp?
I would give anything a go to be honest however I’m a little sceptical on it.
I’ve tried all the laser therapy’s etc and was considering prp but again I’m not sure that would work. I’ve been using minoxidil (regaine) for several years now and although it can irritate the scalp and you do get a small amount of initial shedding it’s not done any harm to me, but then I can’t say it’s a Miracle either.
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I see, so when did you decide to go back on Diane35 and what effects did that have on the hair?
Hey Daydreamerin, just after the birth I went on the bc Diane35 because I had acne, 4-5 months into it I noticed a lot of hair loss went to the Doctor, everything was ok so I thought it might be the bc and I stopped it. It did not help it only got worse, after a year and massive hair loss I did the same you guys did. I went back on it...the hair loss stopped for exactly one month then it just resumed. I was actually losing less a day then now. Would I have this amount of hair or less without the bc? I will never know, what I know is that I am just buying time, cause in 2 years the latest I have to stop taking it.
I know that I have fmhl because some hairs are just thinner, some are minuscule, I have lost density and my temples are disappearing. You could have chronic tellogen effluvium, that also can go on for years and one day just stops, but you would not have miniaturization. In my family no woman had it before me, now my niece who is just 17 was diagnosed with Androgenetic Alopecia too, I feel so sorry for all the young people at least I had 36 carefree years. That doesn't mean, like some young chaps her say, by that age I won't care anymore. You do, you always do.
Do you have the itching, burning sensation? I can always tell when a bout of hair loss is coming cause it itches and burns all over but mostly on the top & temples. If you tell it to a dermatologist he will look at you like you're crazy, never the less I have read it countless times here on this forum.
Yes. They inject vitamins to the scalp. I'm on my 8th month of shedding so i think maybe it is too early to try something like this. But the hair loss is driving me crazy. I've had several days just crying over it. If it does not work i believe it does not do any harm also? At least im hoping so.
I have not tried regaine, too afraid of starting to use it. (Sorry for my english, not my native language)
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Hi sofia, now I completely understand what happened to you. I'm so sorry and I can feel your pain cause the same thing happened to me. My hair loss also started while I was ON an anti-androgenic pill. After I stopped taking it the hair loss got worse and hasn't stopped since. It all started when I was 18 and in two months I will be turning 24. This has absolutely destroyed my life and I have no idea what to do anymore. It is so terrible to be in your twenties with your hair coming out in clumps and you have no idea what is wrong. Even worse, none of the doctors take your hair loss seriously or have ANY idea of the emotional toll it takes. There have been moments when I have seriously considered ending my life because of this.
My hair loss is diffuse and even though it has been going on for 5 years, people around me don't notice. My part still looks normal and there are no places on my head where the scalp shines through. My hair still is growing, I just wish there was a way how I could stop this damn shedding. Are you absolutely sure that you have Androgenetic Alopecia? I wouldn't be too sure about that, often times doctors diagnose you with that because they can't come up with anything else. Burning and itching does sound a lot like CTE...
I also get a lot of itching, it's so terrible.
I want this to end so bad.
I've tried everything they say to stop diffuse hair loss, but nothing worked. The only things left to try were Rogaine and going back on a BCP. I've now been back on the pill for a little over the month and feel like it's getting worse. If this fails I have only Rogaine left to try.
I gave my body 5 years to cleanse itself from all the hormones but the hair loss continued. I have no idea what I can still do.
It feels like a never ending nightmare
Yes. They inject vitamins to the scalp. I'm on my 8th month of shedding so i think maybe it is too early to try something like this. But the hair loss is driving me crazy. I've had several days just crying over it. If it does not work i believe it does not do any harm also? At least im hoping so.
I have not tried regaine, too afraid of starting to use it. (Sorry for my english, not my native language)
No problem your English is good!
I spend days not wanting to leave the house too and crying uncontrollably. My husbands younger than me and I often wonder when he will leave me over it.
It ruins your life
Yes, it really does! I feel i am not the same person anymore, not wanting to go anywhere. I feel it is affecting my relationship also, because i do not want to go any social event and just complaining about it so much...
Really wanting to go back in time and just stay away from bcp. Why i did not search more about this and hair loss...
I really hope it will get better for all of us... I wish you all the best dealing with it and I'm trying to think that It has to stop sometime!
Hi Daydreamerin,Hi sofia, now I completely understand what happened to you. I'm so sorry and I can feel your pain cause the same thing happened to me. My hair loss also started while I was ON an anti-androgenic pill. After I stopped taking it the hair loss got worse and hasn't stopped since. It all started when I was 18 and in two months I will be turning 24. This has absolutely destroyed my life and I have no idea what to do anymore. It is so terrible to be in your twenties with your hair coming out in clumps and you have no idea what is wrong. Even worse, none of the doctors take your hair loss seriously or have ANY idea of the emotional toll it takes. There have been moments when I have seriously considered ending my life because of this.
My hair loss is diffuse and even though it has been going on for 5 years, people around me don't notice. My part still looks normal and there are no places on my head where the scalp shines through. My hair still is growing, I just wish there was a way how I could stop this damn shedding. Are you absolutely sure that you have Androgenetic Alopecia? I wouldn't be too sure about that, often times doctors diagnose you with that because they can't come up with anything else. Burning and itching does sound a lot like CTE...
I also get a lot of itching, it's so terrible.
I want this to end so bad.
I've tried everything they say to stop diffuse hair loss, but nothing worked. The only things left to try were Rogaine and going back on a BCP. I've now been back on the pill for a little over the month and feel like it's getting worse. If this fails I have only Rogaine left to try.
I gave my body 5 years to cleanse itself from all the hormones but the hair loss continued. I have no idea what I can still do.
It feels like a never ending nightmare
Thank you so much, I think only those who suffer from hair loss can understand. One Dr once asked me if everything else in my life is ok, because hair loss should not be such a problem, another one told me I should have seen other patients of him. It's not that I don't care for others but I should not suffer because of them? After so many years of this clearly I do have other problems, I don't like to go out, for ages I did not do anything outside with my children, I am depressed and sometimes I thought that I don't want to carry on. I not only live with this everyday but also with the fear my children are going to have the same!
I really feel for you, you should be allowed to have a youth without having to go through this. How much hair do you lose a day, washing days? The worst of this is the fear not to know where it's gonna end...
Do you want to hear something funny? A while ago, for the sake of my kids I thought that I should go and see a psychologist. She goes: well I understand your concerns and pain, but see it like this. Now you know your burden in this life, others have cancer.
Of course, you only get one burden per life! Guys, we are so lucky!!! That's all we will have to face in life!
If I were you I would rather try minoxidil then the bc, I am allergic to it but I know it's the only thing plus finasterid which can help. Also if you haven't yet buy a shampo with ketoconazol like nizoral, I did buy the 1% version cause you don't need a prescription for it here, I've been using it 3x a week for the past 6 months and I think it has helped. Also make sure your ferritin is over 70. Normal iron levels are not the same for everyone.
Hi sofia, now I completely understand what happened to you. I'm so sorry and I can feel your pain cause the same thing happened to me. My hair loss also started while I was ON an anti-androgenic pill. After I stopped taking it the hair loss got worse and hasn't stopped since. It all started when I was 18 and in two months I will be turning 24. This has absolutely destroyed my life and I have no idea what to do anymore. It is so terrible to be in your twenties with your hair coming out in clumps and you have no idea what is wrong. Even worse, none of the doctors take your hair loss seriously or have ANY idea of the emotional toll it takes. There have been moments when I have seriously considered ending my life because of this.
My hair loss is diffuse and even though it has been going on for 5 years, people around me don't notice. My part still looks normal and there are no places on my head where the scalp shines through. My hair still is growing, I just wish there was a way how I could stop this damn shedding. Are you absolutely sure that you have Androgenetic Alopecia? I wouldn't be too sure about that, often times doctors diagnose you with that because they can't come up with anything else. Burning and itching does sound a lot like CTE...
I also get a lot of itching, it's so terrible.
I want this to end so bad.
I've tried everything they say to stop diffuse hair loss, but nothing worked. The only things left to try were Rogaine and going back on a BCP. I've now been back on the pill for a little over the month and feel like it's getting worse. If this fails I have only Rogaine left to try.
I gave my body 5 years to cleanse itself from all the hormones but the hair loss continued. I have no idea what I can still do.
It feels like a never ending nightmare
This could be my story too.
Sofia
I completely echo everything you just said! I feel the same way and have had drs day the same things and as bad as it sounds and probably selfish at least with an illness there’s a reason and a treatment plan but I feel we are all just in limbo and the problem that is seen as ’cosmetic’ is swept under the carpet. Then because we get reclusive and depressed they wanna chuck antidepressants at us the treat us psychosomaticaly for a cause that is actually physical.
I’m off to the dr today to scream and shout but don’t hold out much hope of getting anywhere different. I feel like I’ve aged so much in the last 3 years I can’t enjoy myself and even going into shops and standing under the strip lights causes so much anxiety.
My 14yr old daughter and my 5 yr old are also losing hair my youngest hair is to her waist and so beautiful (I’m jealous!) I’m so scared they will have the same problem I pump them with vitamins and iron tabs.
Your right only those that go through it truly understand. Even my mums stopped listening to my cries as she doesn’t know how to help anymore.
So I’ve just got back from the doctors where I let rip when I was asked the usual questions ‘are you feeling low?’ Etc.
Basically what I was told is that sometimes with chronic conditions you have to learn to deal with it and accept it!!!!! Wtf.
I went ape. There are no more tests they can offer me and no more insight. I can refer you to another derm- but the previous one had to google (in front of me) telegram effluvium!!!!!! He’d not heard of it!
So the doctors have given up on me and after bawling for the last hour I’ve given up on me.
Basically what I was told is that sometimes with chronic conditions you have to learn to deal with it and accept it!!!!! Wtf.
I went ape. There are no more tests they can offer me and no more insight. I can refer you to another derm- but the previous one had to google (in front of me) telegram effluvium!!!!!! He’d not heard of it!
So the doctors have given up on me and after bawling for the last hour I’ve given up on me.
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Is this a joke?! Our burden?! What the hell kind of answers are these? This actually makes me furious. I often wish I had cancer instead, YES I just said that. Why? Because that at least would be a FINAL diagnosis. It would either be terminal or it would be treatable, and there would be a certain treatment plan to follow. There is a clear path and understanding for the future. Additionally, people will actually show sympathy if you have cancer. They understand that it's a horrible disease to go through and will actually listen to what you say.
With this hell of a condition there is no path at all. I have no idea whether this sh*t might actually end at some point, or if it will go on forever. Every day I wonder if this is going to finally stop. These constant feelings of hope and disappointment rip apart my psyche. I still don't know WHAT EXACTLY has caused this, only that the pill must have triggered something. But it would be nice to know what the hell is going wrong in my body, because clearly SOMETHING is messed up. This is not my burden, this is something that was triggered by oral contraceptives and hasn't stopped since. If there was a way for this condition to suddenly arise, then there also is a way how to make it go away. That's just logic and the frustrating thing about this. Because no doctor seems willing to actually try and figure out the culprit. Instead they just prescribes stuff like Rogaine which (besides a long list of terrible side effects???) actually could make everything even worse.
By your psychologists logic nobody would be allowed to be concerned and in pain, because no matter what you struggle with, there will ALWAYS be someone worse off. Nobody in the western world would ever be allowed to cry even if they had cancer, several other deadly illnesses, a huge family tragedy and massive debt combined. You would always find someone in the developing world who is even more miserable.
But yes, this is just hair loss. Everybody bats an eye when you try to explain how this crap makes you feel. NOBODY understands or seems willing to listen. I haven't worn my hair open in SIX years. Do you know what that does to a young girl who used to love styling her hair every day? It doesn't make you feel like yourself anymore. And when you don't feel like yourself anymore, you don't want to go outside, you don't want to meet up with friends, you don't want to travel, you don't want to work, you just want to be your normal self again. Don't even get my started on washing my hair. I actually have to schedule my week according to my hair wash routine due to the severe anxiety attacks and mental breakdowns that I have afterwards. What the hell kind of life is that? I have tried coping with this for five years now, and I've reached my breaking point. I've started hurting myself because I can't take the emotional pain anymore. It actually HELPS to feel physical pain because then my emotional pain seems somewhat verified. Besides, hair loss itself can also cause physical pain. During the beginning of this I developed psoriasis and it itched so bad I wanted to cry. It itched so horribly and I was scared to itch because of the fear of losing hair. I actually have PTSD from this.
Before this hell started I didn't lose hair. At all. I combed my hair every morning and night and there would never be hairs in the sink. I washed my hair once or twice per week and there always were about 30 hairs in the drain after that.. and that was it. After drying no additional hairs would come out.
After about one month on the BCP I was wearing a ponytail one day. And suddenly I noticed that hairs were loosely hanging down at the end of my ponytail. I pulled on them and shockingly discovered that they must have fallen out! I had never experienced anything like this ever before. That's the beginning of my nightmare... from that day on I was able to pull out about 60-80 hairs per day that were just loosely hanging down every morning and evening. After washing my hair hundreds of hairs would come out. I read that BCP can make your hair fall out so I stopped taking them after 2.5 months. But then everything got worse!!! I started losing 150 hairs per day and 500 or so after washing. Eventually it did slow down a tiny bit, but for the last 3 years it has just constantly stayed the same - losing around 80 hairs per day. After washing my hair once per week probably 250-300.
Since last year I've been using a hormonal hair tonic which has helped reduce the shed even further, but it's still not gone. Now I lose 10-50 hairs per day, it changes a lot. After washing them once per week I lose around 220-250 hairs.
The hair tonic contains alfatradiol which just further points to my theory, that the BCP messed up something with my hormones. I gave it 6 months, but it didn't stop the shedding completely. That's why I then went on my old BCP (which didn't give me Telogen Effluvium). But so far it hasn't helped, unfortunately.
I've already been taking a super high dosage of iron for the last 8 months, but it doesn't seem to make any difference whatsoever. While my blood work did show iron deficiency, I don't think it's the actual culprit. I've never eaten a lot of red meat or other food with lots of iron, so I guess my iron levels have always been pretty low. Yet, I never shed hair before this.
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I'm so sorry to hear about your terrible appointment.. but don't let them tell you to just swallow it.
There is a reason why this happened in the first place. Some kind of culprit triggered this. As long as you find the culprit, this is reversible.
All these doctors are just too lazy to really figure things out, so they tell you to accept it. They are too arrogant to say that they don't know. So they tell you to try Rogaine or to just accept it.
Well, I'm not going to accept this. I'll kill myself before living with this for the rest of my life.
Just how I feel but then I’m told to ‘put things in perspective’ when I voice it. If it wasn’t for my 3 kids. I said if it was because of an illness I could accept it but how can I when no one is willing to do anything but so quick to hand out drugs that’s cause this. It’s our self esteem it’s our confidence it’s our youth it’s robbing us of enjoying life.
I sit there sometimes wondering how long I can go before I will have to leave my husband so he doesn’t have to have the burden, embarrassment or shame of an old balding hag of a wife who won’t leave the house or worse still one who’s hair sits on a nightstand! His ex wife is 10 years younger than me and as they share a child I’m constantly reminded of what I’m lacking.
I just don’t know how much I can deal with anymore. Who the hell can help! With all the research I’ve done I feel like a bloody trichologist!!
In my case, I had to convince my doctor to even do some blood test for me, bc she was telling me that sometimes we lose more hair. It is seasonal etc. At fist i thought that my gynecelogist can help me, explain what is going on and why I have this bcp side effect. My gyn. was a man and he denied that bcp and hair is related in any way and this is not his area. He sent me on my way. He told that he will not do any hormonal blood test to me because there is nothing wrong with me. I left form there in tears because at first I did not know that they actually deny this and I was so hopeful to get some answers.
Another gyn. was telling me that sometimes we lose more hair than usual and I don't have other symptoms (weigh gain, acne etc.), so it is not realted to my hormones and if i'm not on the pill anymore then it can't be because of the pill... because i am not on it!
How the hell is it possible that they seem not to know anything avout it.. they prescribe the pill for you and when you want to get help with the side effect, nobody know anything - they should be the one's knowing all about it.
Another gyn. was telling me that sometimes we lose more hair than usual and I don't have other symptoms (weigh gain, acne etc.), so it is not realted to my hormones and if i'm not on the pill anymore then it can't be because of the pill... because i am not on it!
How the hell is it possible that they seem not to know anything avout it.. they prescribe the pill for you and when you want to get help with the side effect, nobody know anything - they should be the one's knowing all about it.