Part Rant and Zoladex Question

[SimplyDeeDee]

Oh, the glamorous world of injections and their elusive promises! There I was declaring "No more injections for me!" But those consultants have a way of making you believe that they "will help to shrink the fibroids so we can reach the endometriosis easier".

The next line was basically "It's like Postap but better" only, how they put it was "Your body may behave differently to Zoladex than how you were on Postap; we've had patients that have been able to tolerate it better". What they always conveniently forget to mention are the full side effects, or as I like to call them, the surprise party my body wasn't prepared for.

Sure, my hair is intact, and I'm migraine-free this time, but welcome to the Zoladex rollercoaster - highly irritable, snappy, mood swings, drained, and I have low motivation. And oh, did I mention the bonus round of pain? Muscles all over my body are staging a rebellion – back, wrist, hands, fingers, they're all in on it. It's like a symphony of discomfort, with my endo leg and pelvic pains leading the orchestra. I feel like I'm ageing rapidly on this thing physically and mentally.

Now, you'd think they'd throw in some HRT to ease the symptoms, right? Nope! They wanted me to "give it a chance to work on its own" without compromising it, well doc, I have and it's done no good. Plus I'm reading Zoladex without HRT is brutal, so why the brutal treatment yet again?

I've been enduring for six months now, and frankly, I've had enough. No relief, just extra pain and a growing resentment for the consultant who sold me this ticket to the Zoladex rollercoaster.

So, dear HealthUnlocked users, if anyone out there has experienced the special edition Zoladex hand and shoulder pain (aka angel wings), please share your wisdom. Did the pain disappear when you binned it? Because I'm hovering the packet over the bin right now.

And before anyone says to consult your consultant, an email has been sent but no amount of convincing is going to work a 3 time.

[Hidden]

Sorry to hear you are struggling so much, would your GP prescribe you tibolone to take alongside it? I'm surprised they didn't give it to you to start with, if not to reduce side effects but to protect your bones.

[SimplyDeeDee in reply to Hidden]

Thank you, I'm hoping to come off it now and will be upping my supplements. I'm quite certain the extra pains are down to it

[Sheep2]

Hi, I've just had my 10th Zoladex injection and it's still brutal despite being on hrt. I've been awake since 4.30am feeling like I've been hit by a bus! I've tried several different hrt combinations and have struggled with all of them. I've persevered because the hrt protects your bones and can help with symptoms, everyone is different. On the positive side its working for me and the endo has shrunk. I would ask about having some hrt to help you cope , just a low dose one to start with and see if it helps. Love the picture, that's definitely me every month! X

[Moon_maiden in reply to Sheep2]

Love the pic 😀 I used to use Emla cream before an injection, much easier.

I’m amazed about the lack of HRT 🤦‍♀️ Although even though I took it did nothing for the pain or emotions. I was still a wreck. Keep an eye on your blood pressure as well, mine went high but dropped again after the six months and stopping. I wouldn’t have stayed on it longer, horrible stuff.

[SimplyDeeDee in reply to Moon_maiden]

Thank you, I'll look into the cream if I decide to have a 7th and blood pressure hasn't been monitored, the nurse usually jabs (as best as she can) and then books in the next.

On the basis of all the information, I'm requesting a few tests on Monday.

[Moon_maiden in reply to SimplyDeeDee]

Let us know how you get on with tests. Tell GP what you want rather than ask, harder to refuse 🤣 nicely though 😂

The cream I use about an hour and a half before and you cover with a clear film, it’s the sort of thing they use on tattoos and easily bought on Amazon if the pharmacy doesn’t have any.

[SimplyDeeDee in reply to Sheep2]

I'm not one to be scared of injections or needles but this one in the belly monthly, I do brace myself. There's a lot of "wait, wait, wait, ok go... no wait" 😁 so I thought the picture was fitting.

I'm so pleased it's worked for you; it's always good to hear positive outcomes, it gives the rest of us hope. I'm quite reluctant to continue, but I'll see what reply I get back from the consultant; I just hope it hasn't done more damage than good, my left hand in particular is in so much pain.

[Sheep2 in reply to SimplyDeeDee]

Yes I brace myself to! I'm hoping to stop to as I don't cope to well with the side effects. If you can hang on and see if it improves it may well he worth it but do what's right for you. I know that's easier said than done. I'll keep my fingers crossed for you X

[SimplyDeeDee in reply to Sheep2]

Like wise, toes too 😁

[Sunset-lady]

Haha this made me laugh thank you. I love the picture. My husband wanted to leave when he saw the injection. Zoladex is too hard without HRT. I don't know why they do it. They should at the very least give you Tibolone which only provides a small amount of estrogen but is better than nothing. I'm on normal HRT but I'm still bleeding and I don't know if the HRT is causing it. However, without estrogen my mental health is on the floor and I can't do anything. I get mean and say things that just aren't me! I have pains in my wrists and fingers but apart from that I'm good - just need to stop bleeding. Someone on here said zoladex is banned in America but I can't find much information about it. Get some HRT before you bin it. It's a very different drug with addback. Why are you on it by the way? Xxx

[SimplyDeeDee in reply to Sunset-lady]

The injection feels just as big as this haha. Thanks for your reply, I see some of my symptoms are similar to yours and Iand to family and friends I've found myself apologising a lot. I'm usually quite a comedic person and rarely get snappy but I must admit on this stuff, I'm more like a rottweiler which is usually only saved for chasing missed packages.

Make you wonder why it's allowed over here and not the US but then again there are quite a few medicines like this.

They hope Zoladex will shrink the gremlins (fibroids) so they can manoeuvre more easily via laparoscopic surgery - S4 endometriosis and bowel resection. How they are going to do this without opening me up will be interesting; I've had an open myomectomy previously and laparoscopies as well.

[Sunset-lady]

So I went in for total hysterectomy in September because I have a family of fibroids but when they got in they found stage 4 endometriosis which has fused everything together. My cervix is attached to bowel and left ovary. They abandoned it as they couldn't do it. I've seen an endometriosis specialist privately and had MRI too. The specialust recommended zoladex as I'm almost 51 and they just want me on it until I go through menopause which is according to everyone 51.4 years of age. They make it sound like a magic door will appear and I'll just walk through it and be in menopause. In the mean time I just bleed all the time. Hope your operation goes well xxx

[SimplyDeeDee in reply to Sunset-lady]

The fibroids certainly invited their cousin endo along for the ride and the two seem to get on like a house on fire.

How are you feeling after your hysterectomy? Have you found a decrease in pain?

I have a similar situation, I had 8 or 9 fibroids and endometriosis removed in previous ops and didn't feel much improvement, maybe this next one will be a vast improvement.

[Sunset-lady]

They couldn't do the hysterectomy. Too many adhesions and no endometriosis specialist present as we has no idea I had it (I always thought I had it when I was younger). Good luck with your operation x

[SimplyDeeDee]

I missed the abandoned it, gosh I’m so sorry. So they are using just zola to ride it out? Won’t the adhesions still be there after menopause? Won’t everything still be pulled in the wrong direction not to mention the thickened scar tissue? Have you had a second option?

[Sunset-lady]

Yeah everything will still be there but it's been there for probs 20 years. It's working and healthy and operations tend to lead to more adhesions and endometriosis comes back for a lot of people. Also I have a huge chance of having a stoma bag for life. I have no pain at all just hemorrhaging so I'm going to try zoladex and then menopause should help to shrink the fibroids naturally. I saw a top consultant and when he saw how bad it was he wants to try this first. Xxx

[SimplyDeeDee in reply to Sunset-lady]

Ditto, bowel resection is a high possibility for my next op and a stoma. No idea how I’ll deal with that but there are others that do so I’ll have to. 😣

I do hope it works out for you and the get the haemorrhaging under control. I may need to pick your brains at some point and hope you don’t mind if I dm?

[Happyhunt]

Hello SimplyDeeDee

I had a horrific time on Zolodex as well. Yes, the bone pain did go away, or certainly mostly it did. I have lingering problems a year off the stuff but have recently found along with calcium and cod liver oil taking a colegen supplement has made a huge difference to the bone and muscle pain that had lingered.

It took a lot longer than I thought it would for the symptoms to go. I also had the coil taken out a few months ago and that made another big improvement so might be worth looking at if you have one. I think if you are sensitive to these sort of things it's hard to be heard. Also, a lot of the things they want us to try at the moment are hormonal. They tried me on another hormone treatment and I have given up due to side effects and said to my new consultant no more hormonal based treatment. Which she has been totally supportive about.

Honestly, just do what is right for you. I wouldn't be talked into anything again. Zolodex was horrific. And it didn't even work for me. My periods came straight back (with the coil in!) so I didn't get the holy grail 7 year good result I was enticed with. You have my full empathy in everything you say!

Good luck with it all.

Charlotte

[SimplyDeeDee in reply to Happyhunt]

Thank you, I hate the fact that we are all going through this I really do. One thing I am grateful for is that we have a platform to communicate with eachother so freely, without it what would we do 😣. Especially at a time when things are so bad that we feel cast to the side and left to our own devices.

Zoladex is the only new medication for the past 6 months and I need to go with my gut. Last ting I want is another irreversible illness on to of this. Vits and supplement but wasn’t/haven’t been given HRT or had a check in to see how I’m going on yet, I’m trying to get a response to that.

I don’t have the coil, that one I point blank said nup! I was never good with hormone treatment but was ok for a time with Cilique before I started having issues with that. I was convinced to go on postap for the myomectony and had a horrific experience, that’s why I’d refused this one. However like you new consultant, new hospital etc I always say trust your instincts but do we ever listen?

Wishing you all the best and and thank you for commenting

[635703]

The zolodex rollercoaster 🎢 is real, I feel you. I has Tibilone HRT and it was instantly SO much better. Started on just Ti lone and it was hell overnight. Still joints muscle pain, emotions, hot flushes, night sweats, the whole 9 yards. Then Tibilone given. Was on it for 2 years. Had a lap and a 4cm fibroid that the Endo Specilialiat said it was too small to remove according to protocol. Pain is horrific again with periods even with a Mirena in. Had them for 17 years and they usually fix everything. Now I have Crohn’s too. So back down the snake to zolodex and tibilone I go.

Ask for Tibilone or HRT. See how you go maybe? It does help.

Take good care 🫂❤️

[SimplyDeeDee in reply to 635703]

Ahh yes snake and ladders is the perfect description of this whole situation! And it absolutely sucks when another conduction comes about because endo led the way.

Yes if they are on the small side they leave them and for the life of me I don’t understand why you leave a gremlin so it can grow of in an area that’s clearly causing other complications.

What have you had for 17 years the Zoladex??

I asked the gp if any of my medication could be causing the muscle pain and was told no. But Zoladex is the only medication that’s change in last 6months and my instincts are always freakishly right. The really don’t have a clue do they.

[635703 in reply to SimplyDeeDee]

They have no clue, no. Mirena for 17 years. Zolodex for 2 x Oh yeah, possible Immflamatory arthritis with a 54 week waiting list! X

[SimplyDeeDee in reply to 635703]

Oh what a nightmare! They’ve put in a referral for the muscle issue which will most probably be 2025 at this rate. God knows how long a bone density would take.

Take care of yourself and if you ever feel the need to rant dm. 😊

[Bookish_Girl]

I totally understand. I've been on Zoladex now for about 9 months and, whilst the bleeding and period pain has finally stopped, the joint pain is constant - I feel like I'm about 90. I also still have the digestive and bowel issues that I had before. My consultant appointment at 6 months didn't happen and I was bumped to a telephone consultation which I am still waiting for! I have been told I can start HRT in consultation but would love to discuss the impact of that before I just go ahead as I have a rocky history with articifical hormones and a family history of breast cancer. Can't even get a Doctor's appointment with someone to discuss. Really just want it all to go away now.

[SimplyDeeDee in reply to Bookish_Girl]

I echo you and I wish I could heal all of us.

I had my pre op but time is running out for that now, it’ll be out of date in a couple of weeks.

Bowel issue are absolutely agony and daily for me. I have Gastroparnsis and eating anything sets me off; this all came from the endo circuit.

And I totally understand the artificial hormones issue, I don’t do too well with them either and was very reluctant for this one.

I really do feel like the lab rat in my profile heading, I quite enjoyed putting that image together 😁

I hope you get some clarity soon and keep on fighting, this won’t beat us!