Endo and Zoladex Injections???: Hi all! I... - Endometriosis UK

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Endo and Zoladex Injections???

razzledazzle1
razzledazzle1

Hi all!

I am new here! After over a year of asking for surgery, I recently had my diagnostic laparoscopy in September and was diagnosed with Stage 4 Endometriosis (covering bowels, ovaries and bladder). They removed some off of the bladder but I need to have a further op as they couldn’t get the endo on the bowel (as it is now fused to my ovary), which I really hope I can get done privately on my health insurance as I had a horrific experience through NHS.

I do have lots of questions on how well everyone recovered etc but the main thing I would really like to know is if anyone has had Zoladex injections as treatment and how they've dealt with it?

I’ve had to start a monthly course of Zoladex in order to prep for my next op (which is yet to have a date). I didn’t really research this much as had to have it straight after I had my Laparoscopy. I didn’t know how painful it would be and that it goes into my belly. (Right next to one of the incision sites which was so horrible!!) I don’t know how I am going to deal with having to have one every month - I am usually fine with injections but thinking about it causes me anxiety.

It is already causing me bad side effects as well as causing me to bleed every day. (I don’t know if the side effects are in my head as the doctor said I wouldn’t get any until the 2nd or 3rd injection?) Has anyone else felt really down and pessimistic, nauseous, confused and clumsy? I’m usually a really positive upbeat person but just constantly tired with no motivation to do anything. I am also taking the mini pill desogestrel too as well as having the injection. My doctor said to wait and ask when I have my check up in a couple of weeks to whether I should continue taking this? Doesn't bring me much confidence as they didn't really seem to know what they were talking about.

I don’t know whether I am feeling like this due to the whole diagnosis and looming 2nd operation, but I am 25 and I’m worried about the use of this long term. Would be so nice to get some information/advice from anyone who has had experience with Zoladex in treatment for endo xxx

24 Replies
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wow you've gone through so much! I hope you're able to take plenty of rest to just let your mind catch up with everything your body has gone through.

It seems that your endo is a more widespread than they were expecting? It sounds like it's stage 4 endo? (that just refers to how widespread it is) That your endo is on your bowel, you meet criteria to be seen in a specialist endo centre- I would strongly advise you to ask your GP to refer you to your nearest specialist centre so that you can get specialist care. Going private won't necessarily mean you'll see a more specialised Dr. I know you've had a negative experience but it's really important that people who are specifically trained in endo treat you- it's a very complex disease and if your bowel is affected, you'll be wanting the expertise that the endo centres offer. Endo centres have colerectal surgeons who specialise in bowel surgery- you don't want anyone else touching this area.

With zoladex, this is the treatment I was offered but I have decided not to take it at the moment as it didn't make sense for my situation. It should reduce the spread of endo until you get your next surgery so I can see the sense in using it temporarily in your situation and it's good there is a plan for what's next. You really need some more advice about taking it though- I've not heard of anyone taking their pill at the same time but I may be wrong in this. Quite often, we get offered a low dose hrt to 'add back' some of the hormones the zoladex stops so that the side effects of the chemical menopause are reduced. Has this been offered? If you don't know any of this, I would suggest phoning your consultant's secretary and explaining you have not been given adequate information on your prescription and that you need to know whether to take you pill and if you are supposed to get any additional hrt on top of the zoladex. It's not really the GPs fault that they don't know this- the consultant should have sent an instruction to the GP. I don't think it's good enough to wait weeks- you need to be on the right medication now.

In terms of how you're feeling...it could be a real mix of everything. Surgery really knocks us for 6. It's the affect of the anaesthesia and can make lots of people a bit 'wobbly', with low mood and anxiety really common. Plus you've just gone through something traumatic and really stressful. PLUS, you've got the diagnosis to get your head around. PLUS (!!) you've got the chemical menopause happening in your body, which can be knocking everything all over the place. It's so much to be dealing with- emotionally and physically. A lot of this will just calm down in a short space of time as long as you go easy on yourself and give yourself lots of rest and extra special care.

Just use this forum- it's a great support and there are so many people on here with loads of experience.

x

Thank you so much for your reply, so so helpful! Yes, I was diagnosed at stage 4 which I wasn't expecting at all - all I wanted was a diagnosis to what was causing me so much pain, so this did come as a really big shock!

I haven't been offered any HRT, but I will definitely make sure to ask about this and speak my consultant. Just all a bit of a whirlwind and hard to get my head around. The hospital even sent me to the GP to get my stitches removed.. which turned out to be dissolvable?! Diabolical.

This has really boosted my spirits to be on the same level as someone who has been through it too rather than people just saying "you'll be okay soon", so thank you! xx

That's shocking about the stitches! I was told I didn't have any but eventually saw the nurse as I thought my wound looked weird- turned out I had 6 stitches!

I'm glad you feel a bit better- it is all normal. Rubbish, but totally normal. And it will all pass. xx

Hi,

I was in a similar situation to yourself two years ago. I was waiting for open surgery to have as much Endometriosis removed as possible so whilst I was waiting I was put onto Zolodex injections. I like yourself was very worried about it being in my stomach especially when I already have a lot of pain there. Each month was completely different, some months the injections were sore and others were mild. In regards to side effects I had a lot of forgetfulness and clumsiness, hot sweats and tiredness. I do feel like my body got used to them after a few months and I did start to feel a little better and sort of get used to the side effects.

I really hope you start to feel better soon and good luck with your journey ahead :-)

Thank you! That's good to hear that it died down a little - I can't bear the thought of feeling like this for a long period of time! I hope your surgery went well! xxx

Yes it definitely got better with time. My surgery was two years ago and as it was open surgery it wasn’t a nice experience but it needed to be done. I have had an okay two years but have not started to have a lot of pain again so I am back under the hospital for scans and going to see a specialist soon! Hope everything goes well for you this site is fantastic for help and support.

Hi, like yourself i have endo on my bowel, bladder, uterus and left fallopian tube (my bowel is stuck to my uterus). I’m currently on my first Zoladex injection which i had a week ago tomorrow. However i am taking HRT tablets as well as i refused to go on Zoladex without them due to all the horror stories i have been reading and told about 🤦🏼‍♀️. I was informed to stop taking my contraceptive pill 3 days before my Zoladex injection, i have a theory its already slowly releasing as I’m not currently bleeding which is rare for me not to be. But i do know that every case is different and there may be a reason you’ve been told to continue taking your pill alongside the Zoladex. I’m not currently experiencing any side affects other than slight headaches and very mild hot flushes. I just thought I’d share my Zoladex story as it seems to be positive atm, i know its early days and it could change.

Good luck xx

I'm so glad you've been having a positive experience!! I've mostly heard negative things too so have just been very worried and a part of me thinks I may be blaming some things on the Zoladex as an excuse! I have read up on HRT so I think next time I go I will ask about it and see what they say! I think my pill may be different as I take the mini pill which is progestogen only, rather than containing any estrogen. When I looked it up it is actually given to ease menopausal symptoms in women... who knew?!

Thanks so much for your reply and I hope it continues to be positive for you! xxx

Yeah i was really put off the Zoladex as noone had anything nice to say about it, i was adamant I wasn’t going on it but my consultant listened to me and gave me the HRT too. I have a new symptom today but I believe its from the HRT and not the Zoladex but other than that still feeling fine.

Yeah double check at your next appointment. I didn’t realise that as I’ve always been told I can’t go on the mini pill as I’m too young apparently I’m 26 so 🤷🏼‍♀️.

Your welcome if you have any other questions at all about the Zoladex etc feel free to message me xx

Hi dear sis, I'm 37 years old I had laproscopy 4 months ago to remove ovarian cyst but they couldn't find any cyst and found endometriosis (uterus adhesions or scar tissues) have given cocodamol to stop cramps in my intestines, I've constipation with bleeding sometimes, herbal teas sometimes help, surgeon gave me 3 options...1.wait and watch which is not possible 2. Get pregnant but I already have severe pain 3. Open surgery or adhesiolysis

I got desogetral tablets to stop periods or ovulation pain for 3 months let see how it helps. But I'm scared of open surgery because it may lead to a series of surgeries means changing bowl position or shorten the small intestines then fixing etc. Someone please advise me I'm mostly laying on bed but have 2 school going children. Thanks

Hi,

Thanks for your reply! I'm so sorry you have to go through that and with two children that must be so hard!

I was originally on the combined pill and due to severe migraines, the doctor prescribed me with Desogestrel instead. I found that it really did help my pain, and as it is continuous use it stops you from having a period if you take it at the same time every day. This really worked for me as I used to dread the severe pain of a period, but I knew that I didn't want to rely on this long term as some of the symptoms will reappear now and again.

It is completely your choice to what you decide to do. I am due to have adhesiolysis, hopefully this year - so I can definitely give you some information and advice when I have it! It is worth searching the topics and look into some other threads with people who have experienced it. This is such a fantastic support network!

In terms of the desogrestel, I did have spotting for the first month or so, but after that it was just a case of making sure you take it at the same time every day. I chose 10am and popped a reminder on my phone to make sure I do! Let me know how it goes for you, I hope it eases some of your pain! xx

I was on zoladex for many years. You're only meant to have 9 months but it was my life saver. It takes a few months to settle down, can cause instant menopause tho it didnt for me, heavy bleeding for a month or two, but then it all settles down. I had no side effects, it was my wonder drug. At 60 i had ovaries removed so didnt need it anymore, i was on it for 25+ years..

I'm glad you've had such a positive experience with it! I was worried about the long term use of Zoladex, and ideally, I really don't want to have it for more than 6 months. Did it cause you any other problems or was everything fine? xx

Everything was fine, no problems. I have osteoporosis due to being on it long term and should have been monitored years ago. Im ok, no problems and take vit d and calcium now with regular dexa scans. My pain was so bad i didnt care about the consequences at the time. I was living a normal pain free life on it

That's good to know thank you!! xxxx

Also meant to add that it depends on how good the nurse is giving the injection. All my nurses were great except one, who went in too deep, leaving me in pain and badly bruised. I never booked in with her again! Ha

Yeah I think that is what happened with me! I've only had one injection so far and only two GP's in my practice are able to administer the injection - she went really deep and I was very bruised for around a week - horrrrrrible!!!!!!! xx

Poor thing..you need to have a whinge. They should go in sideways not down.

Hallo! I’ve been on Zoladex for years too and it’s been my life saver. The side effects you mention seem to be normal when you first start, they should settle in a few weeks. Other people with serious reactions seem to have them very soon after the first injection.

My gp injects local anaesthetic before the Zoladex as I’m terrible with needles (especially the massive Zoladex one!), plus it’s sore for a day or two after if I don’t.

Before i used zoladex, i was on synarel which is the same, but you spray it up nose. Dont know if its still available but u could try it if the inj too painful. I just found inj more convenient x

Evening. Hope you have had a good day. I am in the same boat with you in the sense being 25 and have stage 4 endometriosis and have now been on Zoladex since March after my surgery to remove two chocolate cysts one from each ovary. I am now on the Zoladex also until my next surgery.

I know what you mean about confused/clumsy state.

Some of the other symptoms I have had since March -

Hot flushes

Headache/migraines (but that was only for a few days 2 weeks after the first injection)

Memory fuzzy

Joint achy (but I have been taking an extra calcium vitamin to help with joints)

No bleeding *did have a little issue last week but had a sore throat/sinus cold so doctor thinks that maybe cause me to start bleeding again perhaps, so I had another injection done to stop the bleeding*

Itchy *not recently*

Thinning of the hair/slow hair growth

Let me know if you have any other questions or just want to talk

Rachel xx

Thanks Rachel that's really helpful! I've also had those same symptoms on the Zoladex. Have my 2nd injection on Thursday, not looking forward to it :(

I am sorry to hear that ....

maybe take some pain killers 20/30 minutes before the appointment (that’s what I done at the beginning)

Now I think that area is just all numb to it ☹️☹️

Xx

Yes!! Good idea, I'll do that!! Oh no that's horrible, poor you!! :( xxx

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