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  • Goldenhar Syndrome

    Common characteristics include facial and ear abnormalities, breathing problems, deafness, heart, lung, kidney and eye health issues, feeding problems and spinal and rib abnormalities. Read more →

    Hi, for many years I haven't been confident with my breasts and bento the doctors on many occasion asking if they are a normal shape as I believe they are not! I got the courage to go to a plastic sergeon to have a quote to go ahead with plastic surgery. However the sergeon has quoted me over £7000 for this as I have a deformity called tuberous breast deformity and will have to have 2 procedures to correct this. I have since been to the doctor stating this asking for help for funding towards this and keep getting declined! Is there any other way I can have help with this ? As I do actually have a deformity- I knew it from the start!





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    Hi, I am 29 and have been experiencing vaginal dryness more noticably for about 4-8 months now, but mainly before sex, i feel as though i do not have much sex drive, and when i feel i do my vagina is not responding. I have been with my current partner now for over 5 years but have changed from Yasmin to EVRA about 9 months ago. Recently I remained dry after 30 minutes of foreplay, it was strange to me as i felt aroused but not overly and that I didnt have a physical reaction or was even slightly moist. Now my partner is thinking that he doesnt turn me on or that i dont find him attractive when this is not the case. Please help as I dont know if this is a physical or psychological problem.





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    Hi, Im 20 and at the peak of my physical fitness. I used to date (2 year, sexually active for 1 year) my ex partner. She had hyperhidrosis in many places on her body and she was born with it as a child. She and her two sisters all have HH to some degree. But after around 2 months of having sexual intercourse, I did not change in physical fitness levels but I also started to sweat all over my body even in a slightly warm environment and sometimes I now sweat even in an air conned office!. As the weather in the past couple of days has increased in temp, I know have to shower 5/6 times a day to keep clean. Is there any way at all I could of 'inherited' HH or a form of it?, I understand that she said it doesn't work like that but I just wanted to clarify before I go to my GP. Thanks, Hope you can get back to me. C.





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    Are there any documented treatments (creams/medication/injection)for the physical problems of vaginismus or vestibular vulvodynia?





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    Can a labia reduction be done on the nhs? I went to my doctor yesterday an she said no, i think it should be as it's causing me alot of discomfort an physical & emotional pain, ive even seen something on the net about self surgery! This is how much it can affect women :(





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    i feel exactly the same way, i have been feeling like this for 10 years and dont even have the confidence to go to the doctors about it. since having my son it has got alot worse. just dont know how to deal with this anymore.

    I'm 21 and have had a very healthy sex life for 3 years but in the last couple of weeks have had problems with vaginal dryness even though I feel aroused. I wouldn't say I'm particularly stressed at the moment so is it likely to indicate a physical problem? If so, what could have come on so suddenly?





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    I am 51 and have now split with my husband, our sex life was virtually dead, because it is so painful for me and with all the willing in the world and lubes i am so dry, this problem must be solvable but i wish i knew how!

    hi i been in the army for 3 and half years and i have IBS and i have put on 2 and a half stone could this be caused by my ibs and i do physical traning and every thing eles sorry about the spelling





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    hi,i recently started dating someone and when we were in bed the first time discovered he had what looked like 20 boils on his balls,both of them..nothing physical has happened between us apart from kissing im really worried it is something invective and dont know how to approach the matter..i really need your advice on what you think it may be..thanks





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    They could be infected hair follicles. Does he shave his testicles? If so he may have ingrowing hairs. You can normally tell if you gently squeeze one, if it pops there will be a coiled hair inside. Best tip for him is to use a clipper rather than a razor.

    I am having left testicle pain(at the back of the testicle) pain for more than a year now. I am 38 this year. I did go for physical checkup and scrotum ultrasound which all came out negative. I had quite a bad heartburn and lower abdominal pain 1 year ago where I went for endoscopy and colonoscopy. The Gastroentologist found two polyps at my rectum and removed it. Now I don't have stomach or lower abdominal pain except heartburn at times. But the left testicle and pelvic pain which started since a year ago with lower abdominal pain and heartburn is still there. Left testicle pain is more prominent especially when there is a sudden move even when I wear trousers or pants. The pain is more like a stinging pain. My PSA is negative and CT scan also came out negative. Doctors said it could be a nerve problem which could heal by itself and since scrotum ultrasound, physical check, CT scan and urine test, other blood test came out negative, I don't have to worry. But the left testicle and pelvic pain is still there. How not to worry? Please help.





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    hi i have fatty pockets of fat in my inner and outer thighs and allso on my right knee.i have been told that i store fat easly but did not get advice on how to get rid of it the one on my knee was found through an mri scan. i am very health person and exercise and have a very physical job many thank





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    I'm 25 and have the same problem i have been told since I was 14 the government would fund me to fix them however they now don't think it's a deformity which it is I just had my first child and was not able to breast feed due to the deformity bras I still have not found one that fits nicely and I find that when I do my boobs sit so funny that they ruin the bra n stretch them out so I would suggest fighting as much as you can to get them corrected I know they have affected my life in a big way with how I view my self and my relationships

    No problems at all, normally that would be an automatic disqualification for the full physical process thats conducted before sending one off to bootcamp. I not only passed all the minimum requirements tests which consisted of stretches, pushups, and situps but over exceeded them. My positive attitude and promise to the doctors onsite that they would make a great mistake to let my deformity be the only reason of me not joining the army when i will not be the best of the best but the army needs a leader like me.. they just smiled and stamped my medical folder with " PASSED"..

    I'm 20 and also have tubular breasts...I originally discovered the actual term recently in a magazine and after ten years it was nice to at least be able to put a name to them. They've always bothered me...but to be honest in various documentaries over the years there have been women with breasts just like mine who have been celebrated as "normal" and just having a different shape. However, I've just watched tonight's episode where a woman with tubular breasts was described as having "a congenital deformity". It was the word deformity that struck me as I consider it such a strong word. How can it be called normal in one situation and deformed in another? I was just wondering if anyone knows if it is medically classed as a deformity, as if not it was an extremely poor choice of words on the part of channel 4. And no doubt it upset many women as it did me. Unfortunately it has only been recently that I have started to feel extremely self conscious about them (to the point of visiting my GP to discuss surgery) and this has done nothing to help :( any insight would be greatly appreciated.





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    Hi Sarah, it was great to read your comment. i too have tublar breast syndrome but believe pixie used the word deformity to describe the condition as within health care deformity means 'not usual/common'. i am just 17 years but from a young age knew something wasnt quite right and have very low self esteem due to my breasts, not only this but they affect my every day life; to be able to get intimate with my boyfriend or go swimming with the girls without feeling like an uncomfortable 'freak' would mean the world to me not to mention being able to buy normal clothes/bras. It took me years to actually pluck up the courage to visit my GP about my breasts, but i am so glad i actually did! she was so lovely and more reassuring than i could have wished! unfortuantely due to her lack of experience with tublar breast syndrome she was unable to make an offical diagnosis; she has therefore referred me to a plastic surgeon within my area (this is due in three weeks time) i am both nervous and excited at the same time as i don't know what to expect. I am also more nervous as my appointment is with a male surgeon (i would ideally prefer a female but understand this may not be possible). All i can say is if your so unhappy with your breasts then do something about it; persist with your GP and if you don't get the results/referral you want then try another GP within your surgery or simply change doctors. Good Luck! :)

    Thx for your comments but my problems are more physical than mental. If i could get a diagnosis of what is cauing this physical problem such as the burning, the tears and cuts then i would be able to get the mental side of this sorted but so far noone can tell me what these physical problems are. Ive narrowed it down to being either Vulvodynia or Vaginismus or Endometriosis. For all i know it could be one of these or some of these conditions interlinked. Unfortunately whilst my GP realises there is a physical problem she is unable to tell me what it is and the problem my gynae is having is she seems convinced its all psychological. So you can see within the 4yrs of having this I havent gotten very far in getting it sorted. And my husband last night was caught again chatting up someone online

    I was diagnosed with tubular breast deformity and had implants and a breast lift performed about 2 years ago. I chose just a regular plastic surgeon and I couldn't be happier with my results! I wish I would've had this surgery years ago and do not regret one single penny spent on it. The embarrassment of tubular breast deformity was huge and I never realized that this was an actual condition. I just thought I had "freak breasts". I'm so happy you are getting surgery done. You will be so pleased!!

    The implant is pretty much a standard breast implant that any women might choose to have and is applicable to both men and women. However it totally depends upon the type of deformity that you have and the level of physical depression. You can get implants on the NHS by seeing your doctor and getting referred to a specialist however it is dependant on the specialist's personal opinion regarding whether you would benefit from this or not. Implants aren't the catch-all answer and can have complications including infection, rejection and movement of the implant once inserted. However I would recommend seeing your own GP to get referred to a specialist so you can assess all of the options available to you without obligation to commit to any.





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    hi - do u have any deformity of ribs? i too have just been diagnosed with ps (at age 37) i have deformed ribs and have been refered for boob job to even up bust as i am same as u cup size differs loads. i have got the go ahead and am now waiting to see plastic surgeon for second time to arrange surgery. If u have rib problem as i have then go bak and tell them about me and that i am allowed one and u should too! please let me know how u go as i know wot upset this can cause (little as it may seem to others it DOES affect mental happiness!) try a diff doc as well cos i went to my old go 15 yrs ago n begged him to break ribs to solve it but he wouldnt (thank god now lol) but when i changed gp n went on the approach of ribs instead of boobs it got me a diagnosis and result. ur prob being seen as moaning when theres no need. but if u have deformity then u have need i found. sad that u have to fight like this. my doc was sooooo good and is even trying to find a specialist to find out more about Polands. please keep me posted how u go on. x

    Hi, Im 31, and I have this deformity, for years I knew there was something just not quite right, my breasts just didnt look the same as most women, it caused me to have such low self esteem & became very depressed at times, so at 30, I decided I couldnt take anymore, went to see my GP, and had them corrected with implants, I wish I had them corrected a lot earlier! I had an amazing surgeon who was straight with me from the start, the care and after care I rec'd was great and my life has changed for the better! I know I may have complications in the future, but I will cross that bridge when I come to it, in the meantime, I am enjoying feeling and looking normal. Please dont feel as though nothing can be done, it can, dont give up, find a good surgeon who knows all about this deformity, life is far too short. Take care. xx





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    Just want to add, that Im not encouraging breast implant surgery, this is a decision that shouldnt be taken lightly and something I thought about for many years. Take care. xx

    did you have to pay for the surgery?

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    This may seem unbelievable, but I never truly realised that I had spina bifida occulta until tonight (March 21 2013.).I am 54 years old. I have always been embarrassed by the dark hair on my lower back. When I was little it grew quite long & was à bit of a pony tail. I hated being different. As à teenager I was never confident enough to wear à bikini even when I shaved it. Now I have it shaved permanently but still for me I "see" it as it "really" is...long & odd! Still in à broader sense it hasn't affected my self confidence but I have always felt very ashamed & worried about my 'deformity' being discovered...Some of this stems from my mother's attitude towards it as she insisted that no-one should see it. I don't think her intentions were bad. I think she blamed herself as she'd been very ill & on medication when pregnant. I've had no physical problems that I know of except à lifelong struggle with constipation & I don't know if that is connected. I wish I didn't have it but on the otherhand I don't lose any sleep either. Sorry to hear that others have it too. It's à nuisance, especially when you're young.

    Hi, I am 25 and felt after reading the above i should respond. I too, have this deformity. I have had four operations now, due to one bad surgeon and a few good ones to correct the work. And although my last op was less than a week ago, so i cant tell you the result, i trust in my consultants. The outcome the NHS had after the third op was good enough, not the perfect breast but alot better than what they originally looked like. They have refused to stop until i am happy and i have a very supported team of doctors. Its a hard, but think, all the people around you (in the NHS) after an operation of this kind are breast cancer reconstruction patients. So although it sucks to be different, we arent going to die. We dont come out of operations not knowing if we are going to make it. Its horrible to have this deformity and i would not for one second try to say it doesnt effect you emotionally as well as physically, believe me, i know. But we will survive, find a good surgeon, get your self sorted and love life. As i have learnt from many women i have shared hospital rooms with over the last 6 years, life is too short. Take care x





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    I had a typo...exercising will not change the deformity due to PS.

    Guys. Go to the doctor annually for a physical. Even if you don't have insurance you can find a full physical for under $100 - don't make it about money. Also...if you are experiencing pain or concern...go to the damn doctor and don't be embarrassed. All men have balls (snowflakes) and most women know how they look and feel.





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    losing your virginity isn't physical it is the first person you have sex with, so no you haven't lost your virginity. the only physical side of it is if you bleed (popping your cherry), so if you didn't bleed it looks like your still a virgin.

    My perception, I feel your physical problem may have created a social phobia. if you have not already thought about this, maybe you should consult with a Behavioral Psychologist who will be able to help you manage the social phobia aspect of your physical ailment. I think it would be very helpful. With all my respect. All the best!

    Is keyhole bunion surgery avaialable on NHS in Cornwall even if the deformity is bad but the pain isn't?





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    i have enlarged labias and im really scared of what a boy will think, im really nervous about being physical with a boy incasse they mock me or tell their friends if they find it a problem. my friend which was a boy said he was discussed by it when had a physical relation with a girl who has the same problem. Ive even heard jokes about large labias and it makes me really self concious, what should i do?





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    I'm 16 And my right breast is soo much smaller than my left, I'm so embarrassed I keep turning boys down because I'm afraid they might tell others about my deformity, it's ruining my life! What can I do?





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    i have the same problem, have gone to my doctor about it and i am waiting to hear back from the hospital to find out if i am eligable to have corrective procedures done on the nhs

    Hey its Neela,Philip thank u very much for your reply, but I don't think my country have a maxillofacial prosthdontist:( I did 4 surgeries but I still have a hole in my palate and deformity.. I even try going overseas to fix it.





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    Neela, are you in the u.k? If you are unhappy with the results of past treatments you can still get surgery on the NHS. Google CLAPA to find the surgical team for your region or look on Facebook, CLAPA adult voices group

    I have this and went to my GP last october. He referred me to a plastic surgeon on the NHS and they have accepted me. Every case is different but with tuberous breasts it is seen as a deformity so they will most likely let you have it on the NHS. I am now looking forward to surgery which should be done by September :)





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    I recently had a big argument with my boyfriend and he decided he wanted a break. People can judge all they like but we have been together for a long time and this really sent me off because he has never done anything like this before. It caused me a lot of emotional pain, and I think this is the reason behind the self inflicted pain.. I felt like I had to feel something physical. I wanted the emotional pain to go away, so I made physical pain to try and cover it. I think this could be the reason why other people harm too... just to feel something. Just thought I would try and see if anyone else has the same feeling as me.. the need to feel something physical when there is so much emotional pain from so many different factors in your life. Although I know people love me, and it would kill my boyfriend if he knew I was doing it, I just can't stop at the moment. But for anyone else, there are people that love you! Don't give up hope and do something even worse.





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