Zoladex and HRT

[My_adventures]

Hey everyone this is my first post.

Ive just been diagnosed with stage 4 endo have two large cysts which has developed into kissing ovaries.

I've been on zoladex because the pressure of my cysts is killing my right kidney, until my surgery date.

Had my first injection this morning and been prescribed HRT Tibolone 2.5mg.

What was everyone's thoughts about taking HRT. Nobody has talked to me at all about the increase in various cancers and other things, I was hoping to discuss with my GP but getting the injections in itself was a fight even though the consultant had written to them.

Many thanks everyone, and happy Monday!

[dodgeviperdiva]

hi hun how's u doing 😜 I've just pm you xxxx

[dodgeviperdiva]

hi hun how's u doing, yes a 6 mth course, it's a odd pain but I understand what you're saying, I got sharp stabbing sensations also, keep an eye on ur body, I finished the course but it took me 6yrs before my body was back to normal (so to speak) since I've finished it I now sweat excessively when I'm ovulating and due on 😂 oh the joys. I refuse all hormonal treatments now, I'm convinced that they cause the endometriosis to grow 😔

[Dogmad6]

I've been on Zoladex for years and not touched HRT. It seems strange to me to take away the hormonal effects with the Zoladex then add them back with the HRT. Obviously that's just my personal view having severe endometriosis, I am too scared of oestrogens. xx

[My_adventures in reply to Dogmad6]

Yeah I thought this too! How do you find the injections?

[Dogmad6 in reply to My_adventures]

They are a lifesaver for me as they really help with my symptoms. I have emla cream and dressings prescribed by my GP which dramatically cuts down on pain from the injection. xx

[My_adventures in reply to Dogmad6]

Thank you so much for replying.

The stabbing pain? I didn't sleep last night from the pain of the injection. When I bend it feels like I've being stabbed by a needle on the inside. I couldn't put my shoes on yesterday because I couldn't bend over. I wasn't prepared for pain from the injection at all.

[Dogmad6 in reply to My_adventures]

You've definitely got to treat the area with respect for a few days. I have found a lot of variation depending how the injection goes. Also some nurses are so much better than others at doing them. I found the best one by chance and stuck with them. Just hope it helps you in the long run. I really find it helps me. xx

[My_adventures in reply to Dogmad6]

Thank you so much for your help.

[Dogmad6 in reply to My_adventures]

I'm guessing that whoever did your injection wasn't that good at it! I found the best person by asking a good receptionist at my GP whether there was a particular nurse that was popular for giving this injection. She suggested someone and they are brilliant. That was following several not very good experiences. Good luck xx

[My_adventures in reply to Dogmad6]

Thank you that's brilliant advice. I would never have thought to do that.

[Dogmad6 in reply to My_adventures]

Just hope you go in ok. You're very welcome. xx

[Petalgirl]

I'm in a very similar situation, stage 4, awaiting hysterectomy and bowel surgery. They want me to take zoladex with hrt, but I am so nervous! And I was so shell-shocked from my appt that I didn't really ask about side effects or anything. I've tried all hormonal contraceptives and they wreck havoc on my mental health so I'm very concerned it will be the same. I'm going to get an appt with my gp to get some more info before I make my mind up.

[My_adventures]

I had planned to make an app with gp but even they are so hard to make at the moment. I read something last night on the endometriosis charity page saying that the effects of hrt probably wouldnt have any effects if you should be creating the hormones anyway. It's a confusing world out there isn't it! Hope you are ok

[Em_46]

HiI've been having zoladex injections for the last year and a half and was also prescribed HRT to counteract the symptoms of an early menopause whilst waiting for my surgery. Having no periods, no pain, no upset stomach, no sickness has been great, I have to admit that I've been better not having periods and having the injections and HRT instead. Of course I can tell when things are wearing off as I do turn into stroppy cow with my husband 🤣 but that's just me. If you are in doubt then talk through with your Dr or your consultant, but I was advised by consultant to have both to stop the endometriosis getting worse and I'd like to think it's working. Also I have lidocaine to numb the injection area beforehand, dogmad6 is totally correct on respecting the area for a few days afterwards especially if you experience the stabbing pain from the inside, I can relate to that!

Good luck. Em x

[Illy-lory in reply to Em_46]

Hi Em,

I was just wondering what sort of HRT were you prescribed?

I was given Femoston conti 1/5 but felt crap on it. Then I was told to take Femoston 0.25/.25, but I'm anxious. I'm on my third decapeptyl injection, and the headaches and flushes are awful. I'm due to have a lap at the beginning on Jan. So I'm debating whether there's any merit on taking the HRT at this stage. I'm afraid of bleeding again, sore breasts etc.

Thank you .

[Em_46 in reply to Illy-lory]

HiSorry to hear that your not having a great time with your medication at the moment.

So I'm on zoladex injections and tibolone HRT, it takes a couple of months for everything to take effect. The boobs just got a bit bigger (as if their not big enough already! 🤣) and the bleeding completely stopped.

Hate to say this but with your lap just around the corner (fingers crossed it doesn't get cancelled either) it might be a bit too late to switch.

Hope this helps?

Em x

[Illy-lory in reply to Em_46]

Hi Em,

Many thanks for your email.

Did you get much bleeding to start with?

I've been on decapeptyl for 2 months, with no bleeding.

I'm afraid that the HRT could start it all over again🙀

How are you feeling? Do you get headaches? Xx

[Em_46 in reply to Illy-lory]

So the first month I had a light period and then nothing since then. Some month's I do get a very light bleed for a day or two but I think that's more to do where they put the hormone implant inject in. Consultant said it was nothing to worry about and the light bleed you wouldn't even notice it to be honest. As for the headaches, can't really say that I've had any more than I would of normally had since being on the HRT. Not had any other symptoms either since being in the HRT, in fact it's solved more issues for me being on it.

[Illy-lory in reply to Em_46]

Thanks Em, glad to hear that it's working for you. Hope it continues. 🙏🙏

[Em_46 in reply to Illy-lory]

Good luck with your lap in Jan! Hope it all goes well for you 🙂

[Catd81]

Hi, I had 3 months of diagnostic zoladex feb, March and April. I was also prescribed hrt but didn’t take it until the menopause symptoms started, I would advise not to do that as it can take 6 weeks to kick in and the insomnia and hot sweats were absolutely awful! However I did start to get twinges in my abdomen like endo pain just no where near as severe which apparently is normal. My zoladex ran out at the end of May and I am right now already having my 2nd period and oh my god it’s hurting so much I’ve been in tears all day 😢 I’m on the waiting list for my hysterectomy and bowel surgery but also have been put to the top of the short notice list as my consultant is wonderful and knows I’m not coping with this pain anymore. I have had to stop my hrt now as you can’t take it 1 month before surgery but my god am I missing it! My advice would be do your research, speak to the professionals and find out all the side effects of everything before making any decisions x p.s if you do take the hrt take vit B12 as well as it can give you some bone and joint pain x

[My_adventures in reply to Catd81]

Hi thanks so much for replying.

I read about the stop taking before surgery and I'm also on the cancellation list. So how does that work together. But it was my consultant who said to take the HRT and put me on the cancellation list 🙈

Im so sorry you are in so much pain, I hope you get your surgery soon and this all ends for you.

[Catd81]

Hi hun, I would ring your consultant and double check about the hrt as mine definitely said I had to be off it for a month prior to surgery. I’ve had the worst 24 hours and had to be prescribed morphine today on top of co-codamol and tramadol. Finally I’m in less pain and have been able to have a wash and sort myself out. The doctor has sent my consultant an expedition letter saying I can’t wait much longer due to the amount of painkillers I’m having to take so fingers crossed that helps.

What is women have to deal with! Hope you too get your surgery soon and we both have a pain free future x

[My_adventures in reply to Catd81]

Oh god bless you, sending you much love and hugs xx

[Jako1982]

Hi, I too have endometriosis and two ovarian cysts that are kissing.

I just wondered what size your cysts are? And also how long the zoladex took to work?

I was started on zoladex but only had my first one on 23rd November I’ve come on my period and it’s horrendous as always.

My consultant said I have to do at least 3/4 months of zoladex before she’d consider surgery.

Did you think the zoladex shrunk your cysts at all?

I’ve had a lot of surgery in the past because I also have Crohn’s disease so I feel like they try to put me off surgery.

However my cyst pain is awful.

Sorry for all the questions, just a bit lost with it all.

Thanks xxx

[My_adventures in reply to Jako1982]

Please don't apologise. I feel like I'm going round in circles constantly.

So combined mass of 22cm. I'll have my last zoladex in two weeks - that will be 6 month's worth. I was expecting surgery within this time. I'm now waiting to find out what I do now. I was put on zoladex as the weight and size is killing my right kidney so it was to stop it growing.

I can still feel the mass in my tummy its made no difference at all as far as I can tell.

Yep loads of pain, have to wear trousers under my tummy or dresses.

Please feel free to message me anytime. This is a lonely disease and the NHS aren't great at support right now.

Take care

[Jako1982 in reply to My_adventures]

Omg 22cm how do you cope?? Mines 11cm and I struggle so much.

Thanks for replying so quickly .

I’m also thinking of going back to work soon but scared I won’t manage.

I’ve been told to try amitriptyline for pain at night. What do take? Do you struggle eating?

Thanks xxx

[My_adventures in reply to Jako1982]

I haven't stopped working as I'm a single parent and need to save my sick leave for post surgery. But it's hard, really really hard at times. How long have you been off? I was told I was at risk of ovarian cancer and to prepare for the worst when I first felt this lump so it's been a journey! Work became a support at one point as it took them 6 weeks to tell me it was kissing ovaries etc.

I don't take anything for the pain and my gynecologist was really horrible to me about it but it wasn't working and just made me feel worse.

Just take each day as it comes and don't put pressure on yourself. And honestly please message any time xxx