I have been to see my GP a couple of times now as my monthly cycle still hasn't returned. After a couple of blood tests it has been confirmed that my levels of prolactin are still extremely high - over 1,000, but should be about 500 which is probably why this hasn't happened. The doctor feels this isn't anything to worry about at the moment but is obviously all linked with the hypertrophic breast situation and just needs to be monitored. I have to say I have had the worst headache for nigh on 3 weeks now and I just feel like I have PMT all the time which is not so good! The results of these tests do confirm what the consultant at the hospital was telling me regarding too much hormonal activity for any surgery to take place so it really has brought it home to me just how long this condition takes to stabilise! I can't believe how it has impacted on so many other functions of my body as well as the obvious!
I went to see my counsellor again this week after a month's break from it. I have to say I was well and truly ready after a couple of negative things that have happened lately so found that I did get a much needed lift after seeing her again.
I am now hoping to trace the case study that the Registrar at the hospital said she was going to publish. I am a little unsure how to go about doing this so if anyone has any ideas please feel free to let me know.
Also I am back to see my GP next week for any update on the Prolactin - I can't believe I am saying this but I cannot wait to see my period again!! (I won't be saying this when the cramps start though!) It indicates that things are settling down in the hormone department which can only be a good thing with regards to my surgery!
I am also hoping to get another bra - I am in so much pain underneath my breasts on the rib cage where the weight of them has caused the wire to press into my skin. My skin has become so thin and is getting sore where its breaking. I have tried putting cotton padding underneath but it's not really working and in this hotter weather only makes the heat emanating from them even worse. I thought I would try the shop I went to in June to see if they could suggest another type/make of bra that may offer better support. Will keep you posted.
A personal diary and an invitation for other sufferers of this debilitating and rare condition to talk and support each other. THIS IS A SERIOUS SITE - NO TIME WASTERS AND NO LEWD COMMENTS.
Saturday, 30 July 2011
Saturday, 16 July 2011
Saturday 16th July 2011
This week I saw my consultant who unfortunately has confirmed that I am still unable to go through to the reduction stage.
Apparently he can tell that there is still too much hormonal activity occuring within the breast due to the heat, hardness and discolouration in both breasts. So not the best news ever but he once again confirmed that I would be sorted out. His reasoning is that to operate now means that there could be mass problems with milk leakage which would prevent a neat scar and if we operated too early could result in a mastectomy which obviously is not what any of us want. He says that it will be best to wait another 6 months and get it right than to do now and have it all go drastically wrong. I know if I was on the outside in I would urge someone else to take his advice and do as he says - its just hard when you are living with this to see it that way but I do totally appreciate he has my best interests at heart.
On the plus side he has agreed to let me go and see the plastic surgeon to talk about the surgery and at least that way I feel like we are moving forwards rather than at stalemate if that makes sense!
The bestest thing ever though is that he has agreed to perform the surgery that will cut the nerves etc which will prevent this from re-occuring during pregnancy again. He assures me that it won't, but at the moment I am not sure if I want to take that risk however at least I have that choice!
So even though it didn't feel like I was getting anywhere at least we finally have some positives. Hopefully I can muddle through the next 6 months and hopefully have some good news regarding surgery in the new year. Lets keep everything crossed then!!
Finally, I have had some negative comments regarding whether or not I can technically say I have suffered with Gigantomastia. They have been hard to read but all I can say is that myself, my doctors and my nearest and dearest know the truth and just how tough this has been. My intention has been only to create some recognition and understanding for this condition and had hoped that fellow sufferes could all stick together. It seems that may not be the case but I would only ask that nobody make judgement until they have put themselves in my shoes first.
I will keep you updated - if anyone is still interested!!!
Apparently he can tell that there is still too much hormonal activity occuring within the breast due to the heat, hardness and discolouration in both breasts. So not the best news ever but he once again confirmed that I would be sorted out. His reasoning is that to operate now means that there could be mass problems with milk leakage which would prevent a neat scar and if we operated too early could result in a mastectomy which obviously is not what any of us want. He says that it will be best to wait another 6 months and get it right than to do now and have it all go drastically wrong. I know if I was on the outside in I would urge someone else to take his advice and do as he says - its just hard when you are living with this to see it that way but I do totally appreciate he has my best interests at heart.
On the plus side he has agreed to let me go and see the plastic surgeon to talk about the surgery and at least that way I feel like we are moving forwards rather than at stalemate if that makes sense!
The bestest thing ever though is that he has agreed to perform the surgery that will cut the nerves etc which will prevent this from re-occuring during pregnancy again. He assures me that it won't, but at the moment I am not sure if I want to take that risk however at least I have that choice!
So even though it didn't feel like I was getting anywhere at least we finally have some positives. Hopefully I can muddle through the next 6 months and hopefully have some good news regarding surgery in the new year. Lets keep everything crossed then!!
Finally, I have had some negative comments regarding whether or not I can technically say I have suffered with Gigantomastia. They have been hard to read but all I can say is that myself, my doctors and my nearest and dearest know the truth and just how tough this has been. My intention has been only to create some recognition and understanding for this condition and had hoped that fellow sufferes could all stick together. It seems that may not be the case but I would only ask that nobody make judgement until they have put themselves in my shoes first.
I will keep you updated - if anyone is still interested!!!
Sunday, 10 July 2011
Sunday 10th July 2011
I have to wonder why some people think it is ok to voice their opinions on another persons appearance without any invitation for them to do so.
Last night I went to the cinema with a friend and as I was walking from my car to the cinema some idiot decided to make a rather loud comment about my - his words - knockers. I could have just punched him right in the mouth - how dare he?? I was having a good day until that point and as soon as that happened felt crap again. Why can't people just keep their traps shut. This is not the first time something like this has happened and I am 100% certain (sad to say) not the last either.
And some people wonder why I am fed up with living with this...
Last night I went to the cinema with a friend and as I was walking from my car to the cinema some idiot decided to make a rather loud comment about my - his words - knockers. I could have just punched him right in the mouth - how dare he?? I was having a good day until that point and as soon as that happened felt crap again. Why can't people just keep their traps shut. This is not the first time something like this has happened and I am 100% certain (sad to say) not the last either.
And some people wonder why I am fed up with living with this...
Saturday, 9 July 2011
Saturday 9th July 2011
We went to Clacton last weekend for a family day out - it was lovely however I am unable to wear the clothes I want to wear. I am totally frustrated as even the companies that specialise in bigger bras don't sell bikinis to fit the bigger busted lady. They seem to stop at a g cup. If I am totally honest I don't particularly wish to wear a bikini but it would be nice to be able to purchase a swimsuit or tankini so that when on the beach I don't feel out of place... Instead I sat there in one of my horrible mammoth tops wishing I could be sunning my shoulders in one of my strapless tops!! I really really hate being like this and just want to be normal again..
Tuesday, 28 June 2011
Tuesday 28th June 2011
I have had a couple of counselling sessions these past couple of weeks which have made me feel quite down. It's great offloading and she is a really great counsellor but it's just me - I feel like I just want to cry when I go because the lack of substantial regression is getting me down. I just want it all sorted out and when I talk about how I feel it just makes me even more depressed as we don't seem to be anywhere nearer sorting me out if that makes sense. It's so frustrating talking about something I hardly know anything about.
On a more positive note I went to a friend's wedding at the weekend and managed to wear the lovely dress brought for me by my hubby. I did feel really self conscious to begin with but then I thought stuff it I am here to enjoy myself and did my utmost to do just that! I felt a little bit like my old self as I tried to make the effort by doing my makeup and getting my hair done.
The hot weather isn't great when you are as top heavy as me. My bra with underwire is just so uncomfortable at the best of times but coupled with the sweat from hot weather (gross I know!) it becomes unbearable. What I find hard to deal with is how dumpy I look. I find that because my tops have to be baggy to take account of my chest size it just looks like a tent over the rest of me, but because the top clings off my chest the overall effect is that I am bigger than I actually am. I am only 5ft tall so it doesn't take much to make me look huge! It's actually quite hard to pull off any trendy look these days and I find that I am most comfortable in jeans and tshirts. I miss wearing feminine dresses and skirts which is why I was so excited to get into the dress which I wore to the wedding. I am so hoping that this time next Summer I will be back into my girlie clothes again!
I have still been going to spin classes at the gym so very pleased with myself. I watched the combat class on Thursday night and got withdrawals! I so wanted to go and join in but I just can't do the jumping up and down. I have decided I might go along one week and do it all low impact however the only problem with that is that it can make things worse when I go along but can't do it at the intensity I prefer! However I think I may just give it a try and see how I go. I have been doing my dvd's at home but mostly low impact. Whenever I do try to do a jog or a star jump I have to hold my breasts tightly in place otherwise the pain I feel is horrendous. Somehow I don't think this method would work at the gym and would only cause me unwanted stares! It works ok at home in my living room though! I have only just felt able to up the intensity of my workouts too so it is a really weird feeling when your head is telling you to up the ante but my body physically won't let me!!
Other than that my back pain seems to be getting much worse but I guess I have just got to get on with it! Baby Sam is just gorgeous however and I am loving every minute of him.
That's about it for now....
On a more positive note I went to a friend's wedding at the weekend and managed to wear the lovely dress brought for me by my hubby. I did feel really self conscious to begin with but then I thought stuff it I am here to enjoy myself and did my utmost to do just that! I felt a little bit like my old self as I tried to make the effort by doing my makeup and getting my hair done.
The hot weather isn't great when you are as top heavy as me. My bra with underwire is just so uncomfortable at the best of times but coupled with the sweat from hot weather (gross I know!) it becomes unbearable. What I find hard to deal with is how dumpy I look. I find that because my tops have to be baggy to take account of my chest size it just looks like a tent over the rest of me, but because the top clings off my chest the overall effect is that I am bigger than I actually am. I am only 5ft tall so it doesn't take much to make me look huge! It's actually quite hard to pull off any trendy look these days and I find that I am most comfortable in jeans and tshirts. I miss wearing feminine dresses and skirts which is why I was so excited to get into the dress which I wore to the wedding. I am so hoping that this time next Summer I will be back into my girlie clothes again!
I have still been going to spin classes at the gym so very pleased with myself. I watched the combat class on Thursday night and got withdrawals! I so wanted to go and join in but I just can't do the jumping up and down. I have decided I might go along one week and do it all low impact however the only problem with that is that it can make things worse when I go along but can't do it at the intensity I prefer! However I think I may just give it a try and see how I go. I have been doing my dvd's at home but mostly low impact. Whenever I do try to do a jog or a star jump I have to hold my breasts tightly in place otherwise the pain I feel is horrendous. Somehow I don't think this method would work at the gym and would only cause me unwanted stares! It works ok at home in my living room though! I have only just felt able to up the intensity of my workouts too so it is a really weird feeling when your head is telling you to up the ante but my body physically won't let me!!
Other than that my back pain seems to be getting much worse but I guess I have just got to get on with it! Baby Sam is just gorgeous however and I am loving every minute of him.
That's about it for now....
Tuesday, 14 June 2011
Tuesday 14th June 2011 cont
OOps - pressed post before I had finished that last one so to continue..
I had to have a stitch put in the crossover chest part of the dress as it was slightly too low but it is just so nice to have something glam to wear. I have been so down so its really good to finally have something that makes me feel good.
I have still been seeing my counsellour - its good to offload on someone other than family. At least it gives them a break from me moaning!
I also managed to complete 2 spin classes last week - I was in a lot of pain after but was so proud of myself for completing them. I get such a buzz from exercise that it felt good to be back! I am hoping to be able to continue going. Hopefully if I strap my boobs up properly the pain might not be so bad!
A couple of weeks ago I contacted a couple of morning tv shows as I am fed up with watching programmes reporting on big chested women but in a slightly humorous way. I just asked them to consider showing a programme highlighting the fact that not all big busted women have got them through choice and that for some of us it's not funny at all and quite depressing. I got a reply back saying it might be considered but as yet nothing further has come about. I feel it would be great if they did do a programme but as this condition is so rare I don't think they will. I guess we will have to wait and see...
Thats all for now - oh I forgot to say I have heard about another woman who had this condition but her nipples grew to the size of her breasts - how awful. Apparently she had successful surgery so there is hope for me yet!!
I had to have a stitch put in the crossover chest part of the dress as it was slightly too low but it is just so nice to have something glam to wear. I have been so down so its really good to finally have something that makes me feel good.
I have still been seeing my counsellour - its good to offload on someone other than family. At least it gives them a break from me moaning!
I also managed to complete 2 spin classes last week - I was in a lot of pain after but was so proud of myself for completing them. I get such a buzz from exercise that it felt good to be back! I am hoping to be able to continue going. Hopefully if I strap my boobs up properly the pain might not be so bad!
A couple of weeks ago I contacted a couple of morning tv shows as I am fed up with watching programmes reporting on big chested women but in a slightly humorous way. I just asked them to consider showing a programme highlighting the fact that not all big busted women have got them through choice and that for some of us it's not funny at all and quite depressing. I got a reply back saying it might be considered but as yet nothing further has come about. I feel it would be great if they did do a programme but as this condition is so rare I don't think they will. I guess we will have to wait and see...
Thats all for now - oh I forgot to say I have heard about another woman who had this condition but her nipples grew to the size of her breasts - how awful. Apparently she had successful surgery so there is hope for me yet!!
Tuesday 14th June 2011
Well I have had a couple of busy weeks with the baby which is why I haven't been able to update my blog.
Things are pretty much the same size wise but I did manage to get an underwired bra - finally!! I had a nasty experience in the first shop I went to as the woman just did not know how to deal with fitting a bra for the bigger chested lady and basically ended up telling me to just make do with the bras I was already wearing as I would be having an operation eventually which would be the best way for me to feel comfortable - thanks for your help! To be honest she was that unhelpful and made me feel really shite about myself that I came out of the shop in tears. Luckily my hubby was there and he ended up talking me into going into one of the department stores to see if there was anything they could do and I was glad I did...
One of the sales women told me to try a lovely little shop called Leia which specialises in bras for the bigger chested ladies. Once there I got measured and found that I was in fact wearing the wrong size anyway and am in fact a 30 measurement not a 32! I then tried on a 30K which fitted me much better than the less supportive sports bra. Its still a huge cup but boy does it make my boobs look much better in tshirts. They just look more normal as there is much more support. I have to say that comfort wise it isn't great and after a few hours the wire is really pressing into my skin just because of the weight of my boobs I guess but I don't feel so self conscious in my tight tshirts when wearing it so thats something positive! The dents in my shoulders continue to deepen...
Another good thing - I am going to a friends wedding in a couple of weeks and was really depressed as I didn't think I would be able to find anything nice to wear. However my Mum found a mail order company that specialises in dresses and clothes for the bigger bust. I had to order a super curvy size 8 but am pleased to day it fits. The dress is gorgeous - blue and at long last I feel feminine again! I have had to have a little stitch
Things are pretty much the same size wise but I did manage to get an underwired bra - finally!! I had a nasty experience in the first shop I went to as the woman just did not know how to deal with fitting a bra for the bigger chested lady and basically ended up telling me to just make do with the bras I was already wearing as I would be having an operation eventually which would be the best way for me to feel comfortable - thanks for your help! To be honest she was that unhelpful and made me feel really shite about myself that I came out of the shop in tears. Luckily my hubby was there and he ended up talking me into going into one of the department stores to see if there was anything they could do and I was glad I did...
One of the sales women told me to try a lovely little shop called Leia which specialises in bras for the bigger chested ladies. Once there I got measured and found that I was in fact wearing the wrong size anyway and am in fact a 30 measurement not a 32! I then tried on a 30K which fitted me much better than the less supportive sports bra. Its still a huge cup but boy does it make my boobs look much better in tshirts. They just look more normal as there is much more support. I have to say that comfort wise it isn't great and after a few hours the wire is really pressing into my skin just because of the weight of my boobs I guess but I don't feel so self conscious in my tight tshirts when wearing it so thats something positive! The dents in my shoulders continue to deepen...
Another good thing - I am going to a friends wedding in a couple of weeks and was really depressed as I didn't think I would be able to find anything nice to wear. However my Mum found a mail order company that specialises in dresses and clothes for the bigger bust. I had to order a super curvy size 8 but am pleased to day it fits. The dress is gorgeous - blue and at long last I feel feminine again! I have had to have a little stitch
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