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Hi Kate and welcome .... I'm sorry to hear about your partners diagnosis my partner had a right temporal lobe tumour he had a crainiotomy a week ago .... all I can say is as far as I'm concerned with all I've learnt read up on in the past 16 months is that mood swings are normal side effect unfortunately!!!! My partner was and still is unbearable to be around sometimes I've cried and cried hoping that my once loved partner of 24 years resurfaced at some point .... I don't mean to scare you and I apologise if I am but I wish someone was brutally honest when he was diagnosed. Your partner may have good days you need to grab those days and enjoy them as the bad days will bring you down arm yourself with as much knowledge as you can about treatments ops etc etc .... you will get through this I promise here if you ever need to vent your frustration.... selina
Thank you so much for your honesty. I'm doing all the research I can and I am very taken aback by everything. There is so much to take in I feel overloaded. I hope your partner is ok after his crainiotomy.
I want to show him I am there but the fact that he pushes me away is frustrating. We will get passed this I know but like you said very difficult.
Thank you so much.
Your welcome Kate my partner is still in bed most days and he's worse than before all normal apparently. I have lost over a stone in weight since November when we found out it had grown you will dread the appointments not knowing what there going to say next it's truly terrifying but somehow your human resolve will just carry you through try and ignore the awful downright horrible person he may be sometimes as it's not him it's the horrible thing inside his head . I can tell you that the doctors and nurses will know all of this so don't feel embarrassed if he gets snappy in an appointment all the info is a lot to digest ..... keep smiling and this site has so many lovely people to talk to . Selina x
Thank you so much for your words an advice. It has made a lot very clear. Thank you so much.
Hi Kate, again! It worked, so I'll put up my full post now
I'm sorry to hear your partner has a prolactinoma but I wanted to let you know about a great source of information and support. I also have a pituitary tumour. In my case the tumour produces too much prolactin and growth hormone giving me a condition called acromegaly. I was diagnosed about. 10 years ago and in all that time I have found The Pituitary Foundation an invaluable support. They have a great website with lots of information you can download, they also have telephone helplines, buddies, support groups, an online forum and they have recently started a text Helpline. The website is www.pituitary.org.uk and the Helpline is Tel: 0117 870 1320 and operates 10am -4 pm Monday to Friday. There is also an endocrine nurse Helpline if you are looking for specific medical input. The Foundation are more than happy to support partners/carers/ family.
I can't comment specifically on the moods but a prolactinoma in men can cause a reduction in testosterone and I would imagine this affect mood as well as libido. Check that he has had his testosterone tested, as well as other pituitary hormones. Make sure he is being treated by endocrinologists who specialise in Pituitary conditions (the Pituitary Foundation can tell you if your hospital is a centre of excellence, and if not, where your nearest centre is). Also, if he is taking medication to reduce the prolactin that may be affecting him.
Hopefully your partner will respond well to medication and no further treatment will be required. Because of the nature of my tumour I had to have surgery and then radiotherapy, but this is rare, especially for a prolactinoma. Thankfully these tumours are almost always benign but discovering you have something growing in your head that shouldn't be is still a challenge to deal with, and the effect they have on all our hormones makes you realise how complex and important our hormones are. Be supportive , but give him his space to come to terms with things. I'm not sure what stage of relationship you are in , but if you are a young couple it may well be that he, and you, have concerns about fertility and starting a family. Again the Pituitary Foundation has info and help to support.
I hope you find the answers you are looking for. Best wishes to you both
Sorry to jump on your post.
I'e just read here that you had surgery for your tumour, my mum is due to have the same surgery next week, she is obviously terrified but as she has significant sight loss because of it she cannot do the research to find out about the recovery process which I think she is thinking about the most.
Can you give me a little insight into what to expect after the surgery for my benefit also.
If love to be able to tell her it will be as ok as can be and she'l suffer a few headaches etc. She' thinking very far into it just the fact that it's brain surgery.
Thanks in advance
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