Zoladex Injections: Still no sign of a... - Endometriosis UK

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Zoladex Injections

Lunaloo123 profile image
22 Replies

Still no sign of a diagnostic laparoscopy yet… had a little telling off from gynae because I chased for a date of when it is likely to be.

The pain seems to be getting worse, it is constant, I use work as a distraction (which is a good thing- I work in an office so it’s nothing strenuous) and then I come home and climb into bed because that is about as much as I can handle.

Paracetamol are like sweets now, can’t remember the last time I didn’t take them. I have to constantly have a heat patch or hot water bottle attached to me (my tummy is a different colour to the rest of me- amusing really) … ooh has anyone used cold patches or anything like that? The heat is a bit much in summer so wondered if that worked the same?

Gynae man has suggested Zoladex injections to help with the pain, my GP and nurses, in the past have told me that this is quite drastic and sort of put me off the idea. Once I received my letter telling me that this operation is not priority to cancer or a car crash (which I completely understand) I thought that I would follow instruction and see what this bad boy can do. I have my first injection on Tuesday and currently feel like I have menopausal symptoms anyway so how different can it be?

I’ve never had children and I’m sure that I would be told off by any mother who has gone through it but every now and again, the stabbing pain feels like what I can only imagine a contraction to be like. I’ll be rolling around on the floor trying not to throw up and feel terrible because I hate making a fuss about anything.

I’m sorry for the massive rant. Being told to talk to people and “breathe through the pain” is getting a little bit old now.

I’ve been waiting for over 12 months for the laparoscopy but I’ve been waiting since the age of 15/16 to get this far so I suppose there’s a little silver lining.

Has anyone else had Zoladex? Does it help pain? Any advice?

I also don’t want anyone to suggest exercise or yoga again… I am now a very fit person (that’s another story) and really want to do all the things I love, like yoga and walking and the exercise bike but I can’t bend, exercise makes me feel sick and I just want to cry.

Not knowing what it exactly is, when they’re likely to find out and putting my life on hold is getting to me just a tad… I’m sure you all understand that particular pain.

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Lunaloo123
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22 Replies
Chartolfrey profile image
Chartolfrey

Hi im on zoledex for endo, adeo, fibroids, endemrtriomas, kissing ovaries stuck to my bowel. Had lap surgery in jan fir suspected endo and was told to severe to do anything. Ive had mri to confirm the above and seen pics which looks like a bomb exploded inside.Anyway im on month 5 of zoledex as i was told 12-18 month wait for full hysterectomy.

The 1st couple of months were hard for me. Joint pain, still painful flares, still bleeding, headaches, insomnia even on hrt at jab 2. The emotional breakdowns was the hardest and i was ready to give up but i was told 2-3 jabs to see improvement. Jab 3 i started to feel good, the pain started to ease so started to reduce how many pain relief i was on, menopause symptoms wasnt as bad and bleeding stopped.

Ive just had my 5th jab and hardly any flares and when i do no where near as bad, no period now for 10 weeks and menopause symptoms come and go.

Is def worth a try but as ive been told remember every girl is different.

Hope u start to get relief soon x

Lunaloo123 profile image
Lunaloo123 in reply toChartolfrey

Wow, you’ve had a rough time of it!

Thank you so much for sharing.

It’s mainly the waiting around that is getting me down at the moment. Whilst waiting for confirmation of what is actually going on in there, the pain is getting worse so who is to say whatever it is isn’t getting worse too?

I hope you’re okay and it’s nice to hear that the injections are starting to ease it a bit. Did they say you’re only allowed them for so long?

Chartolfrey profile image
Chartolfrey in reply toLunaloo123

Im allowed them till surgery. Ive requested another scan after 6 months to see if its stopping the pread or shrinking. Im afraid us ladies dont get listened to till its too late. Ive been fighting for 10 years and always told try this or that and then after lap surgery told its so severe.

The waiting effects my mental health the worse and the 1st few months i just wanted to give up. If it wasnt for my husband being at every app, scan, injection and helping me through.

I find this forum is better to talk to people going through roughly the same.

Mima-77 profile image
Mima-77 in reply toChartolfrey

Hello I think I have the same issue as you

Multiple Fibroid ,Adenomyosis and endometriosis , no bleeding just severe pain .

The doctor had prescribed me Zoladex , but he didn’t explain the reason or side effect of this injection. Iam not having a surgery or planing to do hysterectomy . Do you think zoladex is helpful for me ?

I am single in mid forty’s and I heard when I became menopausal the symptoms would disappear.

Thank you

Lunaloo123 profile image
Lunaloo123 in reply toMima-77

Hi,

I am unsure as I am yet to try it myself. I have my first one on Tuesday but have been told to wait a couple of months before I can truly see if it works or not.

I’m sorry you’re going through all that.

This is so hard and it’s difficult to know what will work until we try it. I’ve agreed to this now because I’m sick of tablets not working and need to try what gynae has suggested.

Mima-77 profile image
Mima-77 in reply toLunaloo123

good afternoon

I hope it work for well

I tried painkillers,but it didn’t help too

Hope you get better

Best wishes

Lunaloo123 profile image
Lunaloo123 in reply toMima-77

Thank you!

I hope you’re coping okay? What are you using instead of painkillers?

Mima-77 profile image
Mima-77 in reply toLunaloo123

I was in the Uk taking birth control ,but when I came back my country I run out of medication

I try to see endo specialist here ,but we don’t have . They recommend me to give up the birth Control and have Zoladex instead because I am over forty and it cause blood clots .

I am not in medication now .I don’t know what to do I don’t have many options here .

Lunaloo123 profile image
Lunaloo123 in reply toMima-77

I’m so sorry, it must be really difficult for you.

I hope that you find a way to get sorted.

ChicagoGrey profile image
ChicagoGrey

I’m due my 3rd jab next week.

The pain has massively reduced, I was a bit sceptical to begin with but it really has helped. I do get occasional pain but no where near as painful or prolonged as before. Periods have not stopped, and have been lengthy but lots lighter ( I also have the merina coil) in place.

Haven’t had many side effects except for night sweats - which are horrible but to be pain free and able to lead a ‘normal’ life, I can put up with it.

I was told I can only have 3 injections then have a review with gynae.

Lunaloo123 profile image
Lunaloo123 in reply toChicagoGrey

Thank you for sharing!

My periods have stopped because I also have the marina coil. The pain is just a constant.

I’m getting symptoms like night sweats anyway. It’s just the pain that I cannot bear so hopefully it will ease it the same.

My GP said to see how I get on after 2 jabs and see so hopefully it’ll help.

ChicagoGrey profile image
ChicagoGrey

fingers crossed for you!

The night sweats took me by surprise, I wasn’t expecting them to be so intense, I literally feel sick several times a night when they hit. I get nothing in the day time - thankfully!!!

Lornalost89 profile image
Lornalost89

Hi. I'm leading up to my 4th injection my local hospital gave me 4 months worth while waiting to be seen at the BSGE centre as my local hospital won't touch me after my MRI...

I cancelled 2 appointments as I was terrified of getting the injection and the side affects, and while everyone expirences something different I can honestly say it has changed my life, saved my life! Mine started having positive affects right away, I haven't had one of my normal flare ups (which would see me rolling round the floor screaming, unable to stand etc & I've has 2 children and childbirth pain came no where close to this pain!) no periods. No menopause symptoms I swear the hot flushes, mood swings etc where horrendous before this injection and now I feel like im happily skipping along to the BSGE centre!! Like I say, everyone is different but if I new it possibly would of had this much of a positive affect on my situation I'd of asked for it years ago!

Lunaloo123 profile image
Lunaloo123 in reply toLornalost89

That sounds quite promising!

I’m sorry that you’ve been through so much. It’s all so sad that everyone is struggling so much and it’s taking so long to figure out what works.

Thank you, I feel a bit better for going to my appointment.

Sunset-lady profile image
Sunset-lady

I'm on zoladex - can't have hysterectomy as endo is too complex. I'd look up menopause symptoms as there are around 34. Hot flushes are well known but others like a sore tongue,paranoia,itching and your hair snapping off can take you by surprise. Zoladex works differently for everyone but I'm still bleeding most days. I wouldn't go on this unless it's a last resort. I tried everything first. It can be very successful for managing pain and when you stop you'll come out of menopause depending on your age. You may need addback HRT for your mood - being plunged into chemical menopause is rough. Good luck. I'd also support it with a low inflammatory diet. Cutting out gluten, sugar and alcohol have made a huge difference.

Lunaloo123 profile image
Lunaloo123 in reply toSunset-lady

It is very much a last resort for me, I’ve tried majority of pain killers, the coil has stopped my bleeding but the pain has gone from 3-4 weeks every now and again to constantly.

I’m 26, but I’ve been suffering for over 10 years and now I’m at the end of my tether so I am happy to try it.

Thank you for sharing, it is so sad we all have to go through this.

Sunset-lady profile image
Sunset-lady

If you are going to be on it for a while get addback HRT or Tibilone to protect your bone mass and your mental health x

Lunaloo123 profile image
Lunaloo123 in reply toSunset-lady

Thank you , the GP has prescribed Tibilone to take alongside the injections. I think I’ll take some calcium for bones as well, can’t hurt x

Sunset-lady profile image
Sunset-lady in reply toLunaloo123

Take collagen, vitamin D and magnesium xx

Bakewey profile image
Bakewey

I echo your thoughts, this illness is pants!

Until now, I have put of having the jab; however, now I am at the top of the list for a hysterectomy, I wish I had it and am in the process of ‘chasing’ to get it.

When I was first advised to have it, my consultant highlighted the negatives and when I went home I did my own research the side effects listed sounded horrendous. The fact the brand I was offered is used to treat male prostrate cancer scared me (my father died of cancer so I have been impacted by his slow and painful demise) so I decided not to take it.

I did, like one of the previous replies book an appointment and then cancel at the lady minute - months on, I wish I had too it.

Then one day, I spoke to another consultant (who I know personally) and he explained how with put back drugs the side effects will be treated/minimal. Having someone spend quality time clearly explaining the benefits was a dame changer.

In the meantime, to help with the pain I’d suggest asking for a stronger pain killer co-Codimal may work for you. In this day and age, we should not have to suffer pain ask your Gp for help with this.

Wishing you all the best.

Lunaloo123 profile image
Lunaloo123 in reply toBakewey

Thank you so much for replying.

I’m sorry to hear about your father, it must be really tough.

The trouble with taking any stronger meds, I struggle to concentrate at work and that seems to be the only thing that can sort of (sort of) take my mind off it all.

I saw a Nurofen advert on TV and cried the other night. One of the first things the ladies said “if a man was going through this, it would be fixed.” And I’m not normally taken by things like that but that is truly how I feel at the moment.

We at least have each other to talk to and I’m so grateful for this group.

Bakewey profile image
Bakewey

I understand the importance of your head being in the game, so for me I just take the odd co-Codina 15 at bedtime as a good night’s sleeps helps me to focus better. By the morning it worn off. Co-Codina 30 makes me sick!

You are right, more should be done/ known about endo…

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