Had an unsuccessful day trying to buy some summer tops today - I need a professional dressmaker to sort me out some nice clothes to compliment my frame in this warm weather. Today was the first time I ventured out without a cardigan on trying to cover up my chest as it was just too hot to wear one. I did feel really self-conscious and got lots of stares as per normal but I did it so am proud of myself!!
As for the state of my chest - the skin has gone seriously weird - my boobs seem to be turning into mostly skin with nothing substantial inside if you get what I mean- pretty gross! They are still really discoloured but I can fit into one of my bras that was too small last week! Happy days! Still no substantial regression to report as yet though....
Tuesday 19 April 2011
Monday 18 April 2011
Monday 18th April 2011
I just wanted to let you know...
I went to the breast consultant last week. I have got to wait 3 months before any reduction will take place. This is because it will fail if we try to carry out the reduction mammoplasty now. I am obviously very frustrated but on the other hand want it to be successful so would rather wait and get it right.
The consultant said I would be referred to a plastic surgeon and then my case would be treated like those women who are awaiting reconstruction surgery so I shouldn't have to go on a waiting list. This makes me feel slightly better. He said it is a medical condition that affects you pathologically and will be treated with the seriousness it deserves. He assured me he would get me restored to my former self so I am totally beholden to him now.... Next appointment is in July so countdown begins now.
I have had some regression since giving birth but hardly anything to write home about. They are still very heavy and have now drooped even further down my abdomen. The skin is very lumpy and bumpy and extremely saggy - it looks hideous and I am still unable to fit in any of my tops.The skin is so stretched and I feel very uncomfortable all the time. This lovely weather is not helping as I have nothing to wear that doesn't draw attention to their strange shape and enormous size. I think the next few months are going to be even harder then I thought....
I went to the breast consultant last week. I have got to wait 3 months before any reduction will take place. This is because it will fail if we try to carry out the reduction mammoplasty now. I am obviously very frustrated but on the other hand want it to be successful so would rather wait and get it right.
The consultant said I would be referred to a plastic surgeon and then my case would be treated like those women who are awaiting reconstruction surgery so I shouldn't have to go on a waiting list. This makes me feel slightly better. He said it is a medical condition that affects you pathologically and will be treated with the seriousness it deserves. He assured me he would get me restored to my former self so I am totally beholden to him now.... Next appointment is in July so countdown begins now.
I have had some regression since giving birth but hardly anything to write home about. They are still very heavy and have now drooped even further down my abdomen. The skin is very lumpy and bumpy and extremely saggy - it looks hideous and I am still unable to fit in any of my tops.The skin is so stretched and I feel very uncomfortable all the time. This lovely weather is not helping as I have nothing to wear that doesn't draw attention to their strange shape and enormous size. I think the next few months are going to be even harder then I thought....
Friday 8 April 2011
Friday 8th April 2011
Our baby boy Samuel James was born on 6th April at 6.08pm weighing 5lb 90z. I also managed to deliver naturally which I was thrilled about. He is just the most amazing creature ever......
Obviously things are still very difficult but now I have this beautiful boy to concentrate on. He is still in intensive care at the hospital but so far he is doing ever so well and we are hopeful to bring him home soon.
One of the doctors at the hospital has also decided to prepare a case study on my condition to hopefully gain further recognition. I have given my consent to her telling my story so fingers crossed that people find it interesting enough to warrant some decent medical research being carried out.
Til next time...
Obviously things are still very difficult but now I have this beautiful boy to concentrate on. He is still in intensive care at the hospital but so far he is doing ever so well and we are hopeful to bring him home soon.
One of the doctors at the hospital has also decided to prepare a case study on my condition to hopefully gain further recognition. I have given my consent to her telling my story so fingers crossed that people find it interesting enough to warrant some decent medical research being carried out.
Til next time...
Monday 4 April 2011
Added extra..
I also would like to say - the double blow for me is that I suffer with bad body image anyway. This condition is so cruel and for me makes me feel like I am fighting a hopeless battle. Also I love high impact aerobics at the gym and I use this as my release when stressed out etc. However now I can't even do this so you can only imagine how awful this makes me feel. It feels like my whole life has been completely overtaken by this ......
Monday 4th April 2011
I am majorly panicking today - tomorrow I go in to be induced at the hospital so the nerves are sky high. It feels so weird knowing that this is the last day of life as I know it!! Life is going to be so completely different (but in a good way hopefully!!) I am feeling apprehensive about having a c section too - if the inducement doesn't work tomorrow then its c section on Weds so my head's in a bit of a whirl.
Therefore I thought for today's post I would just go through what has happened these last few months regarding the breast growth. I would just like to point out these are my personal experiences and not medical facts so if you are at all unsure about anything then please see your doctor. Not sure when I will next be back on so here goes.....
At 6 weeks pregnant I realised that my boobs were getting king of big but not too much to make me worry however when I got to early December I knew that the rate of growth just wasn't normal. In total I have had 28 weeks of growth which is a hell of a lot I can tell you! I was so anxious that I went to the doctors who then sent me to a breast consultant who confirmed within a couple of weeks that it was gestational Gigantomastia and that it is an extremely rare condition affecting 1 in 28,000 - 100,000 pregnancies (odds which are way too random for me!) Basically it was confirmed that I would have to live it with as nothing can be done to treat this all the while you are pregnant. Hardly anything is known about this condition as it is so rare but one thing I did know for certain was that my boobs would continue to grow and the growth would know no bounds so to speak. I can't tell you how awful this time has been.
Painwise I have been in agony since early December - my back, ribs and neck can just about withstand the weight of my chest. I am now at the point where I constantly feel like I want to fall flat on my face when I walk or go to stand up. Balance is a real issue. I have a constant crushing feeling in my chest and as the breasts hang over my frame it feels like they are crushing into my sides too. I have difficulty putting my arms by my sides as the boobs are in the way - nothing feels like it is sitting naturally anymore.
I have to sleep sitting upright as on my back I can't get my breath. The weight of my breasts has made me short of breath these past few months and sometimes it gets so bad that I have trouble talking. It just feels like the weight of my chest is crushing the air from my lungs. I am unable to sleep on my sides because of the overhang - again if I try, I get an agonising crushing pain through my top half which is just unbearable. Sleeping is not great either as I can only lay in one position. During this time I continued to work but with great difficulty and I have to admit that I think I over-exerted myself too much in the end. I just wanted to be as normal as possible but there is only so much you can do in the end.
My everyday life is affected now because I have to be helped out of bed in the morning, I need help in and out of the shower, drying myself and even feeding myself can be problematic due to the massive ledge I have in front of me! I do worry how this is going to affect my dealing with baby as I know how hard I am finding looking after myself but I guess I am lucky as I do have such a supportive family who will help out.Hopefully anyone that thought this condition was funny may now see how debilitating this can be and does become.
I have already said about underwear and clothing issues. I would also like to say here that the only option I have for a properly fitting bra is to get one tailor made. Now this is all very well but trying to find a place that does this is very tricky and when you consider how quickly the breasts grow (weekly or every few days) you need to be sure that the bra is going to offer the support and space to grow. The only company I have found that can do this charge £300 for one bra - which is just out of the question!! If I was a millionnaire this would be fine but taking into account how much we have spent on bras already... The bra takes up to 3 weeks to be made which is useless as my measurements will have varied by then anyway and so this is a pointless exercise. The other horrible thing I have had is that the veins in my chest are very large and bulgy where the weight of my boobs is pulling at the skin from the neck down causing the veins to look as if they are nigh on ready to explode. I can't begin to describe the effect this condition is having on the whole of my body. A couple of weeks ago I started to get issues with my left leg becoming swollen. The whole leg went massive and the doctors thought I may have a blood clot. Luckily it seems to be just fluid that we have put down to the stresses my body is under from the condition as well as the pregnancy. That was when the obstetrician decided that an early delivery of baby is necessary.
The effects of this condition psychologically are enormous - somedays I just don't feel able to carry on and I don't think I have shed as many tears as I have done recently. I have seen a specialist at the Royal Marsden hospital who is hopeful that I should have some regression once baby is born but one thing is certain is that surgery will be necessary to regain my previous form. He also mentioned that my skin will be very stretched and saggy if I do have any regression which will obviously need sorting out too. Apparently the trigger for this condition in pregnancy is that the breast tissue reacts aggressively to the pregnancy hormones and causes this severe hypertrophy. The reason I have had such intense burning and itching pains in my chest is just down to sheer volume of blood pumping through the breasts. You have to be seriously unlucky to get this I guess....
I spend a lot of time thinking of having the reduction. I know this won't be carried out straight away but I am hopeful it won't be too long as I want my life back - I want to be me again. I haven't discussed procedures with the specialist at my local hospital as yet as there was so much else to deal with first. I have researched some methods and know what I would like to have done - however its whether the doctor will agree. I just want whatever procedure to be one that is permanent in the hope that I don't ever have to go through this again. Apparently, this will occur in any future pregnancies so again thats another blow to the system as I am not sure I feel ready to say "no more babies for me" despite all these problems. Its okay when its your choice to say that but when that decision is being made for you it's not so nice. I am seeing the specialist soon so hopefully I will have some answers.
Lastly, I did try to approach a couple of well known tv programmes in the hope they may research this condition and broadcast it on tv to gain some recognition but they weren't interested.
Hopefully, this blog will help raise the awareness and make people take it seriously. I will be back soon with more news. Wish me luck!
Therefore I thought for today's post I would just go through what has happened these last few months regarding the breast growth. I would just like to point out these are my personal experiences and not medical facts so if you are at all unsure about anything then please see your doctor. Not sure when I will next be back on so here goes.....
At 6 weeks pregnant I realised that my boobs were getting king of big but not too much to make me worry however when I got to early December I knew that the rate of growth just wasn't normal. In total I have had 28 weeks of growth which is a hell of a lot I can tell you! I was so anxious that I went to the doctors who then sent me to a breast consultant who confirmed within a couple of weeks that it was gestational Gigantomastia and that it is an extremely rare condition affecting 1 in 28,000 - 100,000 pregnancies (odds which are way too random for me!) Basically it was confirmed that I would have to live it with as nothing can be done to treat this all the while you are pregnant. Hardly anything is known about this condition as it is so rare but one thing I did know for certain was that my boobs would continue to grow and the growth would know no bounds so to speak. I can't tell you how awful this time has been.
Painwise I have been in agony since early December - my back, ribs and neck can just about withstand the weight of my chest. I am now at the point where I constantly feel like I want to fall flat on my face when I walk or go to stand up. Balance is a real issue. I have a constant crushing feeling in my chest and as the breasts hang over my frame it feels like they are crushing into my sides too. I have difficulty putting my arms by my sides as the boobs are in the way - nothing feels like it is sitting naturally anymore.
I have to sleep sitting upright as on my back I can't get my breath. The weight of my breasts has made me short of breath these past few months and sometimes it gets so bad that I have trouble talking. It just feels like the weight of my chest is crushing the air from my lungs. I am unable to sleep on my sides because of the overhang - again if I try, I get an agonising crushing pain through my top half which is just unbearable. Sleeping is not great either as I can only lay in one position. During this time I continued to work but with great difficulty and I have to admit that I think I over-exerted myself too much in the end. I just wanted to be as normal as possible but there is only so much you can do in the end.
My everyday life is affected now because I have to be helped out of bed in the morning, I need help in and out of the shower, drying myself and even feeding myself can be problematic due to the massive ledge I have in front of me! I do worry how this is going to affect my dealing with baby as I know how hard I am finding looking after myself but I guess I am lucky as I do have such a supportive family who will help out.Hopefully anyone that thought this condition was funny may now see how debilitating this can be and does become.
I have already said about underwear and clothing issues. I would also like to say here that the only option I have for a properly fitting bra is to get one tailor made. Now this is all very well but trying to find a place that does this is very tricky and when you consider how quickly the breasts grow (weekly or every few days) you need to be sure that the bra is going to offer the support and space to grow. The only company I have found that can do this charge £300 for one bra - which is just out of the question!! If I was a millionnaire this would be fine but taking into account how much we have spent on bras already... The bra takes up to 3 weeks to be made which is useless as my measurements will have varied by then anyway and so this is a pointless exercise. The other horrible thing I have had is that the veins in my chest are very large and bulgy where the weight of my boobs is pulling at the skin from the neck down causing the veins to look as if they are nigh on ready to explode. I can't begin to describe the effect this condition is having on the whole of my body. A couple of weeks ago I started to get issues with my left leg becoming swollen. The whole leg went massive and the doctors thought I may have a blood clot. Luckily it seems to be just fluid that we have put down to the stresses my body is under from the condition as well as the pregnancy. That was when the obstetrician decided that an early delivery of baby is necessary.
The effects of this condition psychologically are enormous - somedays I just don't feel able to carry on and I don't think I have shed as many tears as I have done recently. I have seen a specialist at the Royal Marsden hospital who is hopeful that I should have some regression once baby is born but one thing is certain is that surgery will be necessary to regain my previous form. He also mentioned that my skin will be very stretched and saggy if I do have any regression which will obviously need sorting out too. Apparently the trigger for this condition in pregnancy is that the breast tissue reacts aggressively to the pregnancy hormones and causes this severe hypertrophy. The reason I have had such intense burning and itching pains in my chest is just down to sheer volume of blood pumping through the breasts. You have to be seriously unlucky to get this I guess....
I spend a lot of time thinking of having the reduction. I know this won't be carried out straight away but I am hopeful it won't be too long as I want my life back - I want to be me again. I haven't discussed procedures with the specialist at my local hospital as yet as there was so much else to deal with first. I have researched some methods and know what I would like to have done - however its whether the doctor will agree. I just want whatever procedure to be one that is permanent in the hope that I don't ever have to go through this again. Apparently, this will occur in any future pregnancies so again thats another blow to the system as I am not sure I feel ready to say "no more babies for me" despite all these problems. Its okay when its your choice to say that but when that decision is being made for you it's not so nice. I am seeing the specialist soon so hopefully I will have some answers.
Lastly, I did try to approach a couple of well known tv programmes in the hope they may research this condition and broadcast it on tv to gain some recognition but they weren't interested.
Hopefully, this blog will help raise the awareness and make people take it seriously. I will be back soon with more news. Wish me luck!
Sunday 3 April 2011
One other thing for today...
I also want to say a huge thankyou to my fantastic husband, family and friends - you know who you are - for all your support. I really don't know how I would be coping or continuing to cope without your help! I hope it's not too long before you get the old Caroline back. Lots of love xx
Sunday 3rd April 2011
Today started off really positive. I had a fantastic nights sleep and couldn't believe it when I woke up actually feeling refreshed for once. Months of sleeping sitting up surrounded by pillows and unable to sleep on my side has really taken its toll so I was thrilled that I managed to sleep well!
BUT THEN..... I went to get dressed and discovered that more growth has occurred and that my once well fitting bra is now next to useless. To be honest I had an idea this would be the case as I have had such heaviness in my chest as well as increased burning pains and itching these past few days but it is still a shock when you have to accept it has happened. The worst thing is I need a bra - I can't get one as there isn't any company that specialises in bras big enough for my size so I have shed quite a few tears today - more in frustration than anything else. I have to wear a bra all the time as I can't bear the weight suctioning down on the rest of my body so now am clueless as to how I am going to get round this problem. I guess I will just have to shove them into the ill-fitting bra - something is better than nothing! Seriously though, that is the problem with this condition, I have one moment where I think yay today is gonna be good - I had a great sleep - then it is all totally undone in a matter of minutes. The negatives always seem to be hot on the heels of any positives that's for sure.
Also I used to get some comfort with my v pillow lodged underneath my chest like a support but even that isn't helping as they are just so heavy. It feels like they are trying to push their way into my stomach and it's agony!
So now I have spent the day feeling really down - looking more like a freak than ever and I feel so swollen and fat its untrue! I just wish I could look like any other normal pregnant woman showing off her baby bump with pride instead of trying to hide myself in men's xl tops and failing to look anything like a blooming mum to be but rather more like the freak I feel I am. When will this nightmare end???
Today is so not good but I am hoping tomorrow may be a bit better??
BUT THEN..... I went to get dressed and discovered that more growth has occurred and that my once well fitting bra is now next to useless. To be honest I had an idea this would be the case as I have had such heaviness in my chest as well as increased burning pains and itching these past few days but it is still a shock when you have to accept it has happened. The worst thing is I need a bra - I can't get one as there isn't any company that specialises in bras big enough for my size so I have shed quite a few tears today - more in frustration than anything else. I have to wear a bra all the time as I can't bear the weight suctioning down on the rest of my body so now am clueless as to how I am going to get round this problem. I guess I will just have to shove them into the ill-fitting bra - something is better than nothing! Seriously though, that is the problem with this condition, I have one moment where I think yay today is gonna be good - I had a great sleep - then it is all totally undone in a matter of minutes. The negatives always seem to be hot on the heels of any positives that's for sure.
Also I used to get some comfort with my v pillow lodged underneath my chest like a support but even that isn't helping as they are just so heavy. It feels like they are trying to push their way into my stomach and it's agony!
So now I have spent the day feeling really down - looking more like a freak than ever and I feel so swollen and fat its untrue! I just wish I could look like any other normal pregnant woman showing off her baby bump with pride instead of trying to hide myself in men's xl tops and failing to look anything like a blooming mum to be but rather more like the freak I feel I am. When will this nightmare end???
Today is so not good but I am hoping tomorrow may be a bit better??
Saturday 2 April 2011
Saturday 2nd April 2011
Today I had to go to the hospital to have the second steriod injection into baby's lungs - boy is that an uncomfortable experience! To be honest it has left my legs so heavy that I haven't moved too far from the couch today (my husband jokingly calls it lazyitus!). I am just soooo tired - the weight in my chest is killing me and to be honest I am looking forward to Tues when baby is being induced. I am still only 34 weeks but the problems I am experiencing now mean that my quality of life is seriously impeded at the moment so its time for baby to arrive so that hopefully we can try to sort things out with me. I am still really scared as I am facing the unknown as I could have further growth when baby arrives or they could regress - no-one knows. Also, I have been told I will be given milk suppressant tablets once I have had baby as milk coming in could cause further issues for me but I read that one of the side effects could be hair loss. Now I have gone further into worry mode - as if this isn't all bad enough already??
I also had some very rude people staring at me today (and making it obvious). I can't tell you how it makes me feel - I just want to be a hermit. I know I look a freak but I just wish people could be slightly more tactful. Either that or I get a tshirt made proclaiming "I have Gigantomastia - I honestly didn't pay for these!" which can be worn each time I leave the house. Now the summer is coming I am getting more anxious of going out as I have no way of covering up and the thought feels me with dread..... I have had women looking at me like I am something nasty they have trodden in and men just leer and point and stare. It really does affect you psychologically. Anyway I am logging off for now am sure I will be back soon with more updates!
I also had some very rude people staring at me today (and making it obvious). I can't tell you how it makes me feel - I just want to be a hermit. I know I look a freak but I just wish people could be slightly more tactful. Either that or I get a tshirt made proclaiming "I have Gigantomastia - I honestly didn't pay for these!" which can be worn each time I leave the house. Now the summer is coming I am getting more anxious of going out as I have no way of covering up and the thought feels me with dread..... I have had women looking at me like I am something nasty they have trodden in and men just leer and point and stare. It really does affect you psychologically. Anyway I am logging off for now am sure I will be back soon with more updates!
My First Day as a Blogger!
Here's hoping the site takes off and will be beneficial for women all over the world.
As my first post I would like to welcome you all to the site - first timers, sufferers, those who are just interested and those who are viewing for friends or family. I hope the content will be interesting for you to read and that over the months and years we will be able to make a positive difference to each other's lives.
As my first post I would like to welcome you all to the site - first timers, sufferers, those who are just interested and those who are viewing for friends or family. I hope the content will be interesting for you to read and that over the months and years we will be able to make a positive difference to each other's lives.
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