Feeling really rubbish and a few other general endo and prostap questions

Sorry everyone this is going to be a bit of a long one at the moment I'm struggling with lots of stuff and feeling really fed up. All advice appreciated :)

I had my second Prostap injection at the begining of the month and the last couple of weeks I have been feeling really miserable and old and like my bodies not my own any more even more so than I did at the start of the treatment.

I am studying for my final exams at uni in 2 weeks (which were put back from May due to me having had major excision surgery at the end of april) so I am already stressed out with the amount of work I've got to do so thats probably not helping.

I was given livial as HRT in April when I had my first prostap injection, but I havent taken it since the first months worth ran out, I made the decision not too due to my scary mood swings and feeling like I wanted to just explode out of my own body!

anyone used any natural alternatives to HRT that are suitable whilst on prostap or any other type of these injections? I feel like I need something as the hot flushes I am experiencing are really awful and I get wet with sweat from them. I am considering going back to Livial but would like to try and find some alternative first.

I was following the endo diet pretty well until my fiance lost his job at the beggining of the month and I havent really been able to afford to be buying wheat / gluten free, I am trying to get back onto it at the minute, think I'm just going to go veggie for now - although stocking up on fruit and veg can be pretty expensive :( Does anyone know any good websites for or have any recipes / ideas that are suitable for the endo diet because I'm struggling to come up with things.

Since around 4 weeks ago I have noticed changes to my hair and skin and my general self esteem. I have got terrible spotty skin on my face and keep breaking out all the time and looks really pasty and dull, my body just doesnt feel right the skin feels sort of squishy or watery, I feel achy most of the time and old! My hair seems to be frizzier than usual as well and dull. Like I said the hot flushes are terrible and if Im not having one Im shivering, even though I'm not particularly tired during the day I'm struggling to wake up in the mornings so not getting up till 11. 12 or later! i'm having really restless sleeps because of night sweats and getting up needing a drink or the loo! I generally feel rubbish and ugly. I feel like I cant explain to my fiance how I feel because he just says you're lovely and theres nothing wrong with you and but I know he cant really understand what I'm going through. Any experiences with this / advice on what to do take would be really helpful. Will I feel normal again once the prostap starts going out of my system after the 6 months is up in October? I panic thinking that my body will never be the same again and I'll be stuck feeling like a horrible old women (I'm only 27)

Since my laparoscopy and excision surgery my 'lady bits' just havent felt right, it was extremely swollen after the op and that has gone but the skin above sort of the bottom of my pelvis feels squashy and looks different to how it used to? Is this fairly normal after a lap / surgery and if and when will it start to feel normal again?

All of this is making me feel really miserable and I'm getting fed up feeling sorry for myself so I will be so grateful for anything any of you can tell me :)

xx

7 Replies

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  • Honey a lot of what you describe sounds like you need to go back on the HRT. It's bound to cause a few problems when you first start taking it, but once your hormones settle you should see loads of improvement. For me, once i had gotten settled, I wanted to take it forever. Talk to your GP, there are loads of different types of hrt and some suit people better than others.

    With regards to the diet, fruit and veg is a cheap way to eat when you stick to local markets, seasonal produce, or own-brand non-organic (a lot cheaper than meat!). Try visiting local allotments, they often have stuff that they give away for free. Also, Citizens Advice should have details of veg box schemes ran by local community allotment and organisations. Some of them give it away for free, others ask you to go and harvest what you want, and some just ask for a small donation.

    You have a lot going on so be easy on yourself x

  • Thank you.

    I am starting to think that HRT will be the answer, going to make appointment for a chat with my GP about it.

    Thanks for the info on the veg boxes, I'm going to have a little look into it now :)

    xx

  • Hey hun,

    Wow you are going through the wars :( All of what you have said I can relate to. I turned 24 last week and have had 2 laps and now on my final stint of Prostap. I had my fourth 3 weeks ago.

    I thought it was just me with the spotty face, after 3 weeks on my first injection my face errupted with spots under the skin. I have never had spots in my life and have always counted my self lucky, but after every injection more and more have appeared. I sleep my weekends away but dont sleep in the week because i fear i wont wake for work. I ache from head to toe, the only way i can describe it is that my pelvis is frozen to the point it cant move, my legs hurt, nausea, loss of appetite, i get headaches, dizzy spells and have seriously dry skin on my hands. The one day i was hurting so much and needed dog food i went to tesco and it took 35mins to get in to the store, get the food and pay, walking was a task in itself. I have been fortunate not to suffer so bad with the hot sweats but the nurse thinks its my tolerance towards them. Up unti the 4th injection 3 weeks ago my stomach was bloating daily by 10am, i couldnt do my work trousers up or wear heels as both seemed to make matters worse. I wont go on because i dont want to put any more fear into you but for me the worst of it was the mood swings. generally i'd be ok but every couple of weeks it would be like someone switched me off and i couldnt move, smile, eat, drink, walk my dog i was just sad and lonely. literally within a 4 hours id be back to my bubbly happy go lucky self :-S

    On a lighter note, after the 4th i must say i noticed a huge difference pain wise. i have had 2 weeks of being pain free and wow i felt great, granted i was still sleeping and being spotty and off food but without the pain i didnt care. I went out on a few nights out, wore heels which was a god send, and took a trip to alton towers. Needless to say its back with avengence and im thinking its because its starting to wear off.....

    I'd like to say stick with it, i didnt want to but i didnt want the gynae's to say well you didnt try it so we're going to discharge you etc. in ways im glad i did because of the 2 weeks of being pain free but as for the lethargy, old woman achey feeling, mood swings that were darker than our english weather combined with loss of apetite, sleep, dry skin, spotty face and dizzyness i dont know if it was worth it. My first week i remember so well i was literally crawling, i couldnt move i was in so much pain and ever since i have just been left demotivated and like a sad little hermit. Talk to your boyfriend, i felt like a broken record at times but it creates the bond between you if he has a better understanding. The guy i was with for a short period while on it went and did his own research into how to help me :)

    Sorry to have gone on but i wish i had had someone that would be completely frank and honest with me so i knew i wasnt alone and that i werent feeling sorry for myself it was the injection.

    Take care hun xx

  • Nice to know someone else is experiencing the same. I havent had the bloating or the stiffness but everything else is horrible.

    Yes I do talk to him but always feel like i dont want to go on about things, not just with this thats the way I am, Ill tell someone a problem or how im feeling then just get on with it and keep it too myself, so il have to try harder.

    Since about 6 weeks after my first injection Ive been about 80% pain free so on that I cant complain and after 2 and a half years of it I should be glad that ive just got a few little problems, but it does get u down when u feel rubbishy.

    I was given 3 months worth at a time and the second was a month ago tomorrow so maybe I might start feeling a bit better soon, my consultant doesnt want to see me again untill the end of November and he said hes 90% certain I wont be going back on prostap :)

    I definately think its the injection doing it, surely false menopause is going to mess us up a bit!! Thats another thing I worry about, how much does it mess us up coz its certainly not natural or normal! and will we go back to normal (whatever that is) after its out of our system.

    Hope you're feeling better now and it will carry on :)

    Keep smiling xx

  • Hi I can totally relate to everything you are saying. I am in my fourth month of prostap injections and i can honestly say i hate every second of it. Hot flushes, night sweats, aching, sickness, high blood pressure, mood swings, anxiety and now my skin is starting to break out :(

    I'm currently on morphine and 5 other tablets, I need to be strong and healthy for my four year old child but sometimes i wish i could just lie in bed all day and not wake (if only that was an option) My husband is really supportive but he doesn't know what its like to feel like this. I am so pleased I found this forum its reassuring to know I'm not the only person going through or feeling this crap.

    Has anyone been told what the follow up plan is after the injections? xx

  • Hi Lyndsey,

    Hope you're feeling a bit better.

    I've started taking cod liver oil, calcium and magnesium alongside my usual wellwoman vitamins and I am slowly starting to feel a bit better.

    As for the mood swings and anxiety try some flower remedies - the bach ones can be expensive but there are cheaper alternatives, mine were around £2 something a bottle and you only need 3 drops, try crystalherbs.com and click on essence shop then bach flower remedies on the left and it gives you info about each one. I've got a cherry plum and a wild rose which help calm and balance and bring enjoyment back to life, but theres loads of different ones for different things. I just put a few drops of each in a pint of water, you have got to stick to it though to feel a difference.

    I still cant get past the not being able to wake up in the morning and feel like I just want to lie in bed all day too its awful, I have it in my head to get up and do stuff but then when it comes to it I just cant get up :( Maybe its coz ive got nothing to get up for, i've just finished uni and made a mess of it and Im looking for a job but worried that I wont be able to get myself up or be too tired to cope with it. Be strong for your little girl and try and use her as a reason to get up and do stuff with the day :)

    It is so hard to try and tell your partner what you're going through, mine trys his best but I know he gets frustrated ciz he doesnt really understand or know how it feels, our poor men go through it, I had a right go at my partner the other night coz we hadnt been anywhere or done anything but really its coz I'm fed up with my life being like this and not being able to change it .

    Keep smiling :)

  • Oh I forgot to say, no I haven't been told what the plan is, my 6 months is up in October and I go back to the consultant in November, I'm just terrified about the endo coming back and having periods again :/ xx

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