Help I got diagnoised with endometriosis today

Hi im new to this site,

I got diagnoised with endometriosis today and I have to go back to the hospital on monday to start the injections?? Has anyone else had these injections and how were you when you had them im worried about the emotional changes you can have from being really moody to just crying for no reason. Can anyone help me or give me any advice please xx

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  • hi there which injections are you refring to.

  • The consultant didnt say the name of it, she just told me that injections would make my body think it was in the menapause and i have them for 3 months and if they are working then i have them for another 3months.

  • Hi there,

    Sorry you have been diagnosed. We can all relate to you!

    Sounds like you are going to have decapeptyl or zoladex injections. If you search on here for those terms you will find lots of info. It basically puts you into menopause. You shouldn't have periods, and it should help with the pain. You might ask about Lival (tibolone) add back therapy to reduce the side effects.

    For me, I didn't have any of the side effects for the first month, but then got really bad hot flashes, night sweats, memory loss, dry skin etc. The livial is slowly getting me back to normal.

  • I got diagnosed last week hunni so I know exactly what you’re going through, it’s very scary but explain a lot when you think about to all the pains etc.

    Just think at least you know now and there are other women of all ages out there going through the same thing.

    I have the doctors this Friday so will see what they say, I’m only 23 so I just really want to know what my chances are on conception in the next few years.

    Good luck and try not to panic at least your getting treatment and know that you have support on here. X x

  • Hi Katrina

    First of all, I am so sorry you've been diagnosed. I remember being absolutely scared to death when I had my diagnosis 20 years ago. Sending hugs.

    I can also totally understand why you are concerned about the injections. I think it's human nature to look out for all of the bad side effects first.

    The thing is, everybody is different, so what might affect one person really badly has no affect whatsoever on the next lady. With regard to the mood swings though - yes, you might get teary and snappy, but to be honest, I've had worse PMT. And if you do find yourself getting more emotional than usual, just tell yourself that it's 'only' the injections, and that when you stop taking them, you'll be back to normal.

    If you really react badly, which is very, very rare, they will just stop the injections. Except in extremely rare cases, everything is reversible. Remember that millions of women all over the world are having these injections as we type, and many of them, me included, have been on and off the injections for years. We wouldn't keep going back to them if they were that bad.

    I hope this helps, and try not to worry. Endometriosis is a horrible disease to have, but it's not life threatening.

    Feel free to message me if you want to chat

    Lots of love, Chrissie xxxx

  • Hi guys thanks for the quick replays im going to search through the site and see what info i can find out about the injections and im deffo going to ask about the lival and the back theropy as my back pain at the moment is just hell and the consultant was worried about me taking such strong pain killers each day.

    Im just really worried about the mood swings and being moody and angey infront of my children and then getting angry at my boyfriend aswell.

    Im 24 and i had a lot of trouble carrying my pregnancies and had 4 misscarragies but im gratefull and really happy that iv got my 2 children, at the time of my misscarrages there was never a reason and the doctors just said its one of those things but now iv been diagnosed with endo i feel like thats the reason and answers i needed.

    Let me know how you get on at the doctors on friday ms bella i hope its good news you get x

  • Hi there - I'm sorry you're going through this.

    I can now officially say, since the insertion of the mirena coil last month, that I have tried every medical treatment licensed for endo. The only one that really helped me was zoladex but unfortunately I stayed on it for 2 years with no HRT and I'm still having side effects 3 years later.

    Please thoroughly research your options and the side effects before agreeing to anything. I wouldn't automatically go for HRT as this can make the endo worse in some ladies. If your gynae has suggested zoladex or similar, I'd think this was because the endo was quite severe and they want to shrink it - however, I was offered it (or nearly forced into it) when I was dx too and mine wasn't that bad then.

    These drugs can be very effective but they're very powerful and they do have their downsides. If its not a case of you having very severe endo that needs to be 'shrunk' before surgery, I'd personally look at my other options first. Have you tried the pill or the pill injection? They're very effective for some women without the extreme side effects. There's also the mirena coil that I've just had which is like the pill injection but a much lower dose - I'm really struggling with it but I've heard it's easier to handle when you've had kids. As it is, I've had contractions every day for over 6 weeks!

    If you want more children, then I would have thought your best bet would be surgery to remove the endo without hormonal treatments which can mask the severity and make it harder to see and remove. However, some women need zoladex to shrink down large deposits or cysts before surgery as its too severe to remove without it.

    At the end of the day, you have to make the decision about what you want as its your body - don't be pressured into something you're not comfortable with.

    I spent 2 years on zoladex and when it ended I went straight back on the pill. My sex drive has never come back so I don't have a physical relationship with my husband, when I have breakthrough bleeds I still get hot flushes etc and I wonder if I'm actually ovulating at all but I'm too scared to find out, It really helped me for the first year, I just wish I'd stopped after that.

    Good luck to you

    X

  • Hi

    Firstly so sorry to hear you've got Endo.

    I can only tell you what I've personally experienced and like others have said everyone is different. Last year I had a 6 month course of Zoladex and found that the pain totally went away which for me outweighed the side affects I had. My main side affects on the Zoladex were hot flushes and night sweats. My husband did find on a couple of occassions that I would take his head off for no reason but he did understand why thank god. The only other side affect on the Zoladex was my hips hurt (joint pain). I know this sounds strange but it started after the second injection and gradually improved again after the 6th.

    I am now on a 3 month course of Prostap with a Livial HRT add on. Again my pain has gone away but the hot flushes are back. The HRT add on is a very low does and it is to protect me against developing osteoporosis which according to my specialist is a risk with the injections.

    So far I have had 2 of the 3 injections and other than the sweats which only seem to be during the day I feeling really good, and my hips aren't hurting nearly as much as they did on the Zoladex.

    I hope this helps, but like I said these are my personal experiences of the injections I've had and everyone is different. I would however say that inbetween the injections when my pain returned if someone had waved a Zoladex jab infront of me I would have killed for it.

    I've got everything crossed for you and I hope you find some relief from the injections.

    Lots of Love Di xxxx

  • I'm so sorry for your diagnosis, but, welcome to the club. The best people you'll meet, and I'm not kidding, are other endo-sisters. We're the only ones that really, properly understand when you say something like, 'I was in so much today I didn't even want to move!'

    The other injection it could be is Prostap, that's three months as well because I'm on it.

    I can only answer from experience on Prostap because I've never had the others, it did make me really hormonal, you know I was nearly crying at an episode of Dr. Who! The only other big side effects I've noticed are migraines, sore breasts and vaginal dryness. But everyone's interpretations of hormones injections are different.

    I’m wishing you all the luck in the World.

    D.x

  • Zoladex injections, yes I had them myself. They did not work for me with Tibolone HRT Addback.

    They apparently work well if your problem is endometriosis but if adhesions (pelvic scar tissue) is the main reason behind your pain, then they won't. Sounds like they have recently discovered you have endometriosis so it is a good idea. The Zoladex as another rightly said puts your body into early menopause the reason for this is when you are in menopause your oestrogen levels drop dramatically and oestrogen feeds endometriosis. So if you starve the endo of oestrogen (its fuel) in theory it stops it in it's tracks and stops it spreading and causing more problems long term.

    Yes, it can make you moody but if you explain to all around you that for a while you may be a bit of a crocodile and a bit up and down and to ignore it whilst the treatment kicks in it hopefully will zap the endo early in it's early stages.

  • Hi, I have a five year old daughter and like you am worried about being snappy or angry with her. I had 6 months of prostap injections and my PMT stopped so I was actually better on the injections. I am going back for more! Everyone is different so why not give it a try, you can always stop, I would say have the add back HRT to help with the side effects though. I hope you find the help that you need. I feel very lucky to have a daughter as so many with endo cant have kids but looking after kids when you have endo is sooooo difficult X

  • Thanks for all your replies and advice im going to phone the hospital tomorrow to find out what the name of the injection is im going to be having, are they all similar does anyone know?

    Im deffo going to give them a go as im due on next week and my pains are kicking in now my thighs, back and tummy are all strting to hurt i just hate this pain so much i just dont understand how and why it can hurt so much.

    Iv had the scar tissue removed it tangled my fallopian tube and my intestines together so they seperated them and removed the scare tissue and then they found the endo on my right side and on my pelvis xx

  • I think the injections are all similar..

    Have you tried a tens machine for the back pain? It really helps me, but not others.. you just have to keep trying for things that will help.

    I would think that if you only have pain around your period, that the injections will help a lot. Deffo ask about add back therapy though :)

    Good luck.

    Nix

  • I constantly have back ache and i get the pains in my thighs a lot but when im due on i feel like im dying i take a mixture of pain killers but nothinf really seems to get rid of the pain x

  • Hi ya,

    I'm new to this site too. I was diagnosed 3 months ago after having an internal scan which showed a polyp in my womb and a cyst in my ovary.

    I had an operation to remove these but when my consultant went in she found that everything was covered in Endometriosis. It was such a shock, but initially i didn't understand what endo was. They were unable to remove my cyst because of the endo so I now have to have another operation on 10 December to to remove the cyst and to try and remove the endo.

    I'm on the injections too, have been for 3 months. I had no side affects for the first month, but after my second injection I have noticed changes. No mood swings, but emotional (at times), hot flashes, really achey joints and extremely exhausted (I'm not sure whether thats the endo or the injections), like I said, it's all new to me too!!

    I have an appointment on 29 October to see the bowel surgeon for a sigmoidoscopy to see if the endo has gone through my bowel wall, if it has then i will have to have a temporary colostomy bag for 6 weeks after my next op!!

    I may not be able to help you much, but if you ever want to chat feel free to message me.

    Take Care

    Kelly xx

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