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Sunday, 4 September 2011

Sunday 4th September 2011

Not much to report - to be honest I have hit an all time low. I am fed up with this condition - fed up to the back teeth of it's rarity and how the only way to deal with it is to wait a few months and see how it goes (as advised by doctors etc). I am fed up because it is something I still have to live with despite giving birth 5 months ago. I haven't even got the energy for this blog today.

However just wanted to say I have had lots of information sent to me from somebody in Germany - it has been very helpful giving info about case studies etc. I have looked through some but am going to look at the rest later on as I just don't feel I can take any more in at the moment. I just feel very depressed right now. However it has been good to find info about the condition despite this and its definitely given me more of an insight into it. I am going to pass some of the sites etc to one of the ladies who has contacted me who is a fellow sufferer so hopefully it will help her too.

I have also been invited to join a forum of a sufferer of an entirely different physical affliction if you like which has been good because I have realised that there are many conditions/problems out there which make you stand out from the crowd. At the end of the day support is support whether or not it is found from a fellow sufferer or just somebody who knows what its like to be different. I feel I can also offer support on how I have coped too, and its just nice to talk with people who know how it feels. It doesn't matter they don't have my condition - its just respect and understanding.

I also feel that acceptance is what I need to achieve. I am slowly getting there. I have always felt that I was outside of myself looking in and that until my operation wouldn't be myself again but I have realised that is silly. I need to live in the here and now and accept this has happened to me and for now nothing is going to change that fact! I know at some point things will change so I need to concentrate on living life to the full. The forum has helped me realise that.

I have seen my plastic surgeon. It didn't go as well as I had hoped. He said there is no procedure to cut any nerves within the breast as well as saying more kids would kick start the condition again. (I am getting upset with different doctors saying different things too but I guess that's the way it is). He also said if I continue to see much more regression and am left with just saggy skin this won't be operable on under the NHS. They will take the skin away with breast volume and also uplift, but will not just deal with saggy skin. That really upsets me as we could appeal but its not guaranteed. It just seems so unfair after everything me and my family have gone through. Now I feel like saying please don't go down anymore- just so I can be operated on and have my boobs in the right place again which is a silly way to be. At the end of the day it is still a medical condition that has made this whole process necessary in the first place so I guess I should just do as advised and take one step at a time and deal with this as and when. I am keeping my faith in the NHS -I have got to! I know I am lucky to be a UK citizen as other sufferers in other countries don't get half as much medical support as I have already received. I MUST focus on the positives. One thing I have learnt this whole time is that this condition is always one step ahead of me, ready to stick the knife in that little bit further. However, if the NHS won't help me then I will have to look to private - not ideal but someway, somehow I will get this sorted. I am determined. I have decided that I am not going to stress about this until I see the breast specialist next year - what is the point? He can hopefully reassure me then. I have been lucky to have more regression but even though I am now more in proportion the effects of the stretched skin do need to be sorted out badly. I feel I have lived this condition inside out, upside down and know all there is to know about it now! I feel like I could be an expert who gives talks on the subject just through living it!

Therefore I am going to sign off for now. I may not be able to check in so much as I am returning to work shortly and I am finding that I have increasingly less time to do things I want as it is! However I will be providing updates when I can. I am always happy to help fellow sufferers if need be or anyone else who is suffering from any other condition that is causing misery. As the advert says "it's good to talk".

Thanks to all for your positivity and encouragement - it has been really helpful - I am just going to try to have a couple of months where I think about something else rather than this frustrating condition as I am fed up with it taking over my life and depressing me further. The time has come to accept it and just deal with it. I think this will only benefit my recovery in the long run and my medical supporters and family wholeheartedly agree.

I will update when I have any further news or doctors info to provide so til then ...

Saturday, 13 August 2011

Saturday 13th August 2011

I just want to say a massive thankyou to all who have been posting positive, helpful comments on my blog. It really has been trememdously comforting to receive some support and appreciate all your comments. I appreciate you taking the time to follow my blog so thank you.

As for me - there still has been no return of my cycle. I am now having to go for more blood tests as my doctor feels we just need to see if my prolactin levels are in fact coming down. It may be that we just need to keep a check on these for the time being before any further investigations are done.

I have been given some website addresses to peruse which I am hoping to investigate further in the next few weeks. I have to work doing this around the baby so I will be in touch with further news/developments regarding these as soon as I am able.

I have now purchased another bra - this time a 28J - this doesn't fit that well however the wire does not dig in so much to my skin like the 30K! I just have a bit of overspill over the top of the bra!! To be honest the best fitting bra is a full cup bra however these ones do push my boobs to the side again and I get that awful over-hang look at the sides which just enhances the size of my chest. I don't feel so comfortable when out in public wearing that so find it easier to wear the ones that push me together at the front to make things less noticeable! Comfort wise they are not great but at least it helps me mentally when out and about if that makes sense. The sports bra is great for sleeping in and just lounging at home but again offers not much lift or support (which is surprising for a sports bra!). I am now wearing 3 different sizes and style bra but do find this is helpful for weight distribution and therefore helps comfort-wise! The pain is not always on my back it can be moved to my shoulders etc - its still painful but at least I can give the areas a rest from time to time!

I am hoping to be given some pointers as to reading some case-studies too so hopefully can keep you posted on that too.

I missed counselling this week which has made me a little grumpy due to babysitting probs but got another session in 2 weeks instead so looking forward to another off-load!

I have been writing my experience into words - I would love to try to get it into book form but feel I am being way too over-ambitious - however it is therapeutic - a little like this blog! I think this condition is just too rare to garner that much interest but what do you guys think?

I have also been experiencing real heaviness in my chest after a nights sleep. I haven't had this since my pregnancy so not sure why this has started again. That coupled with my back makes it impossible for me to get out of bed with ease in the morning. It is a really horrible feeling and takes a good 10 minutes to abate.

Well thats all for now - keep all POSITIVE comments coming please!!

Saturday, 30 July 2011

Saturday 30th July 2011

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.

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!!!

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...

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....