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7 Years on......

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AnnieC View Drop Down
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    Posted: 25/February/2016 at 10:04am
Well it has now been 7 years since I lost my hair, so thought that I would put my experience to paper just in case it may help anyone who is starting out on this journey.
I still remember very vividly when my hair started to fall out. The feeling of total despair, shock, not knowing where to turn, who to talk to and sadness of losing my identity.
You feel so isolated when something like that happens, especially after professionals seem to show no care (as you are not ill!) I didn’t know how to cope.
After trawling through internet sites, I decided to go to a hairdressers that said that it specialized in wigs. At this point my hair was very thin, so it was suggested that I have hair extensions to try and make it look thicker. This was very expensive and only lasted a short while as I was losing my hair rapidly. The hairdresser then suggested that I try a wig. The ones that she showed me were “very wig looking” and in my opinion far too much hair, so trusting that she was used to cutting wigs, I agreed to buy one and have it styled. To my utmost horror, I discovered that she really didn’t have a clue and left me with a look that I was absolutely mortified with. (I still call this my scarecrow wig!)
I remember sitting in the chair looking into the mirror and feeling totally numb. At that time I felt like my life had ended.   Luckily for me, one of the girls that worked there suggested another wig that they had in the salon. Although it was far too dark for me, the style was much better and at least I didn’t feel like a total freak. The owner of the salon said that she would only charge me cost price (for the one that she ruined!) and would order me a new one in a lighter colour. She let me borrow the darker one, so that I had something to wear in the meantime.
I remember going home and bursting out crying. It felt so alien. The fit wasn’t great and it certainly wouldn’t have stayed on in windy conditions. At that time I was working from home, so for me it was ideal not having to leave the house. Unfortunately I knew at some point I would need to face the world which scarred the life out of me. I decided that the best way of tackling this was to email someone who I knew, knowing that she was a local gossip and explain that due to alopecia I had lost my hair and was wearing a wig. True to form, word soon got round. I knew that people were discussing me and why they thought it had happened. I was totally screwed up with my feelings and this was probably my darkest time. I remember getting to a point where I felt I needed to escape. I was planning on getting into my car, leaving my husband and children and just driving. I had no idea where I would go, but just needed to get away. It was a horrible feeling.
With all this going on, I had completely forgotten that I had tickets to go to Glastonbury with my sister in law and her husband. (I have known her since I was 15 and we are very close). Not ever having been to a music festival before I didn’t really know what to expect. I can honestly say that if it hadn’t been for that time away with them, I really don’t know what might have happened to me. It gave me the space that I needed. (if anyone reading this has ever been, they will know that anything goes at Glastonbury. Nobody judges anyone and it’s a bit like stepping off the planet into another world) Just what I needed at that time.
When I returned unfortunately so did all the fear lack of confidence and all of the other feelings that I went with. By this time my appointment with a counsellor had arrived, so I spent 1 hr a week for the next six weeks talking things through. I didn’t feel that I connected with her and still really don’t think that I actually gained much. In my despair I decided that I would try anything, so found (again through the internet) a hypnotherapist. (I really didn’t know what to expect as you hear all sorts of stories about being hypnotised) so I went with an open mind. In lots of ways it was very much like the counsellor, but in a more relaxed atmosphere. We talked through about the cause of what had triggered it initially and although it was very uncomfortable for me to discuss my feelings, it was beneficial just talking to a complete stranger who wasn’t going to judge me and gave me some mechanisms of how to deal with certain situations.
Around that time my family were also pressurising me to get a dog. We had lost our previous dog quite a few years prior and I was very anti getting another one and going through all of the heartache again, however, they wore me down and I finally gave in. I can honestly say that this was a turning point and the best thing that I could ever have done. Although she was supposed to be my son’s dog, as with all of these things, I ended up doing all the work! Although I didn’t appreciate it at that time, this was amazing therapy for me. She got me walking early in the mornings and again at lunchtime. Through her, I have met some new really lovely friends. Six years on, we now have two balmy dogs that I owe a great deal to. Animals aren’t always right for everyone, but they do give unconditional love, make you laugh and get you out.
Now 7 years on, I wear a freedom wig, have had my eyes and brows tattooed and am once again enjoying life. My hair did start to grow back recently, but it has decided to fall out again. I am now however ok with the fact that I have alopecia. I still think about it every day, but it doesn’t upset me anymore. I can even joke about it. There are even a few benefits!
I hope that if you are reading this and at that point of despair, it will give you a bit of hope. Things do get easier with time. Like anything new, it takes time and adjustment to come to terms with, but it does get easier. I really hope sharing my experience will help.
Annie x





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Mrs Mc View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 25/February/2016 at 2:01pm
Annie
I have read your post and am feeling exactly how you felt when you were going through hairloss.  I am three years down the line with this problem.  Initially i was diagnosed with TE and then chronic TE and  recent indications would suggest that  I now have scarring alopecia. I am waiting to receive the results in two weeks time, following a scalp biopsy.  I have lost about 75 % of my hair.  I have little round the sides and the top is receding rapidly.  I also have a constant burning sensation on my scalp so am reminded all the time of my hair loss.  

I used to be a confident woman and my hair was really my best feature and I loved it.  Although it was thin, there was a lot of it and it was curly and wavy - my crowning glory.  I haven`t been to a hairdresser for almost a year as there is little to cut and it`s too much of a painful experience to endure. Previously going to the hairdressers was a treat - I`d  go and get my hair cut/high lighted, look at trashy magazines and just have a morning of total relaxation.  I can`t do that now.   I don`t want to socialise   and I am dreading going on holiday.  

I have done some research and am convinced that my hairloss problem is the result of over -exercise.  It would be interesting if anyone else reading this post also shares my view. I did absolutely no exercise for 30 years and then decided to get fit and lose weight but I went at it hell for leather!  I dieted sensibly but my exercise regime was manic.  I`d joined a gym   I attended  a zumba class and weight training class back to back.  I attended circuit training one evening, attended a running group another evening plus had 2 - 3 sessions a week in the gym, plus 2 sessions of spinning per week. I am now convinced  that I put my body under so much stress that it impacted on my immune system and the hairloss is the result.  On a different note I would love to hear  your thoughts  re your Freedom wig as I will need to consider replacement hair very shortly and I think this type of wig  is the way forward for me.  Thank you for sharing your experience which has given me some hope at least.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AnnieC Quote  Post ReplyReply Direct Link To This Post Posted: 25/February/2016 at 2:27pm
Hi Mrs Mc. It's such a difficult time to get through, but you will get there. Like you, my hair was my best asset and I felt devastated to lose it. Since I've been wearing my Freedom, I feel "normal" (whatever that is) again. I choose who I want to tell and they are always shocked and quite often don't believe that it's a wig. It looks so natural. Obviously there are some limitations, for example, you can't sleep in it and it's not advisable to wear hats or run your fingers through it too much as this will limit it's life.
Mine usually last for between 18months to 2 years. I word of advice is make sure that you have it styled by someone who knows what they are doing and are insured!
I know it's a big transition, but the confidence it gives you is so worthwhile.
It was interesting what you said about exercise. I'm certainly no expert, but that would make sense. My only concern would be that a freedom has a silicone base. After you saying that you are experiencing burning sensations, it might pay to speak to your doctor to see what their thoughts are as it's a big investment. I'm sure there are plenty of other people on here who can give you advise on other types of wigs in case this one isn't suitable.
Good luck with everything. xx
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 06/March/2016 at 3:40pm
Today is a bad day. The extent of hair loss in the past six months has been  immense.  From gradual hair loss over the past three years to full on accelerated hair loss is just very distressing.  What hair I have left is like old lady`s hair.  It is dull, whispy but like candy floss and almost impossible to comb. It looks in a very distressed state.   I`ve lost most of my hair now and the constant burning on my scalp particularly bad on my crown and which moves to different areas is a constant reminder of my trauma. I have this discomfort all the time and   I believe I have the end stage of scarring alopecia and am now likely to lose all my hair.  I get my biopsy results next week so I will know for sure what the position is. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AnnieC Quote  Post ReplyReply Direct Link To This Post Posted: 07/March/2016 at 9:31am
Hi Mrs Mc, I'm so sorry to read your message. It takes me back and I fully understand how you are feeling. It really is the worse stage to go through. I could have done with someone to turn to when it happened to me, but didn't know anyone, so had to deal with it on my own. Do you have any support groups near to you? I would really suggest that you attend a meeting if you do, with other people who have this condition, as you are not alone.

I know when the last of mine went, in a very strange way it was almost a relief, as the stress of loosing it was almost unbearable. It is so important that you look for a wig that you feel comfortable in to start to build up your confidence again. Again, if you have a good friend to do this with I'm sure it would help you.

It's horrid not knowing and I'm sure once you get your results, you will be in a better position to deal with things. I wish you lots of luck and will be thinking of you :) x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 18/March/2016 at 10:54am
Thank you Annie for your support. The diagnosis was as I expected LP but I was pretty much geared up for this in any event. I am now looking at hair replacement as the way forward to get my life back on track. Thanks again for your kind thoughts which are appreciated.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AnnieC Quote  Post ReplyReply Direct Link To This Post Posted: 22/March/2016 at 4:15pm
Hi Mrs Mc. I really feel for you. This is a horrid journey, but I'm sure you will get there. Make sure you get lots of support.
Hope all goes well x
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Devina Quote  Post ReplyReply Direct Link To This Post Posted: 20/July/2017 at 10:54am
Hi Mrs Mc I would love to get an update on your situation. As I belive I am going through the same ordeal as you. I also believe it has been triggered off by over exercising.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mrs Mc Quote  Post ReplyReply Direct Link To This Post Posted: 20/July/2017 at 10:35pm

Devina


I wish I could give you more positive news but scarring alopecia is a real bummer, putting it bluntly.  However you need to get a diagnosis if you haven`t done so already and you may have to demand this from your GP. it`s quite clear that most GPs have extremely limited knowledge about this condition as it is so rare and some may not even be aware of it.  It took a year from seeing my GP before I was able to get an appointment to see a dermatologist. Don`t be fobbed off with excuses like its your hormones, age etc.  The sooner you get a firm diagnosis the sooner treatment can be started to try and halt the effects of this illness.  


A year has elapsed since my last posting and my hair loss has been quite dramatic.  I now only have a very thin covering of hair and became really depressed with my situation.  Hair loss can occupy most of your thoughts every single day and can stop you from enjoying everything and anything.  I just wanted to stop feeling like this and back to the old me.  I have been prescribed various medications by my dermatologist and have read extensively about the implications for my health if the medication is taken long term and have therefore decided against any form of medication whatsoever.  Instead I take vitamins including turmeric and pumpkin seeds which are supposed to be helpful in fighting this dreadful chronic illness.  


I did go and investigate wigs last November - I went to the House of Fraser (skulking around the wig department, concerned that I would see someone that would know me and would then be aware of my dreaded hair loss secret!) but they seem more geared up to helping temporary hair loss sufferers ie people whose hair has fallen out due to chemo and required temporary synthetic rather  than human hair wigs.  I saw another wig  lady (one man band) in January who was extremely helpful but I didn`t think I was ready to go down the full wig route at that time .  Anyway I then discovered `Beautiful Betsy` in February which is  a hair topper.  Google the name.  I actually visited the lady who sells the product who also suffers from  hair loss and was wearing the product,  which was a good enough endorsement for me.  In addition she does lots of helpful videos.   Mentally you have to be accepting that you are ready to go down the route of replacement hair.  I have worn my Betsy (made of human hair)  daily for almost a month now and it has fully restored my confidence and at last I feel like me.  I can`t really tell that I am wearing hair as it is not heavy.  It simply feels how my scalp used to feel - a scalp with hair on!  I am so much more happier although I do still have the occasional bad day but I really  don`t dwell on my `problem` to the same extent.   To put it in perspective,  my real hair was truly my crowning glory - all curls and waves with minimal maintenance. How times change and how the loss of hair can impact so greatly on a person`s self worth!


I was suffering from a lot of scalp burning prior to wearing the topper which now appears to be less severe but unfortunately the hair loss continues. Nobody has commented on my `new`  hair and I guess they think it is my own  hair, so that is really encouraging.  I have got to the point that I cannot go out without wearing my `little helper`as  I have become so reliant on it!


I am also a member of a closed Facebook page for this particular type of alopecia which has been a godsend as information is shared re medication, hair replacement, vitamins, diet and all manner of things to do with this illness.  I also attend Alopecia Uk support group which again is a real life saver.  The website will list a support group near to where you live. I would really suggest you go along as you will be  amongst friends


Finally I still do not know for sure what caused my scarring alopecia.  Initially I thought it was extensive exercise;  however on my closed Facebook page its been suggested that Nitrofurantoin (an antibiotic I was prescribed for cystitis 7 years ago and which I still take off and on for cystitis ) may be the culprit but I will never know for sure.  I think I`ve got to the point that I`m no longer interested in even knowing the source.  I can`t change my situation as the damage has been done. All I want to do, is enjoy my life and if a topper enables me to do that, then it is a very small price to pay.  There are many options to get back to enjoying your life so please don`t suffer in silence. If I can help further please let me know


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Post Options Post Options   Thanks (0) Thanks(0)   Quote Devina Quote  Post ReplyReply Direct Link To This Post Posted: 09/August/2017 at 8:35pm
Hi Mrs Mc

Thank you for your reply. My hair loss started this year March 2017. At first i guess i thought it was seasonal hair loss or that i was low in iron or some kind of deficiency. However after a month or so my hair loss continued but accompanied by strong burning sensation. I knew striaght away this was not normal. I made an appointment with my GP and did the usual bloods etc. I was told that my iron was low and that is what is causing my hair loss. The burning pain continued to the point it was preventing me from going about my ususal self. I decided to then see a private dermatologist. He performed a biopsy the very next day. I received my result within 10 days. I was devastated when it came up with early scarring process but they could not give me an actual diagnosis. I dont think i have cried so much.

The hair loss has continued and my hair loss is diffused rather than patchy. My hair loss is mainly at the front and top of my scalp. I have been using steriod application which had not helped in the slightess. I have now also been given antibiotics to take for 3 months.

You can now see my scalp and i have also very thin covering.

Im glad to hear that wearing a topper has helped you get your confidence back. To also hear that its not even noticable make me feel even better. I dont think i am ready to take that route yet but i feel in another few months or so i may not have a choice.

Is your hair loss patchy or diffused? You mentioned that the burning has subsided quite a bit. Does wearing a topper irritate your scalp?

I think im still in the grieving process and am at the 'why me / what has caused this stage.

I just hope i can get back to feeling like me again as i dont think i can cope with the everyday struggles of this horrible disease. Thanks for your time and advice.
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