Decapeptyl injections : Hi all hope... - Endometriosis UK

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Decapeptyl injections

Jawaireyam
Jawaireyam

Hi all hope everyone is well!

I recently joined this and I am so happy that I did and to

Learn that that I am not going through this on my

Own and so many of you are going through and are in the same situation.

I wanted to ask whether anyone has been on the decapeptyl injections before and if they have had any success with this? As it has really affected me negatively and made me very unwell for the past couple of weeks and has made everything worse with pains non stop. The doctors think it may be the endo coinciding with the injections but I’m not to sure what it may be.

Thank you!

33 Replies
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I was on Zoladex, didn’t have a noticeable effect with pain. Could have worked with calming endo as MRI showed a difference.

Had last one just over four weeks ago, it’ll be interesting as it wears off!

Have a search on the forum, there’s varying experiences

Hi,

Thank you for replying,

And oh right that does make sense did you notice any difference with pains straight away or was it after a while? And that’s great that it helped calming the endo! That’s great it will be definitely interesting as they are really intense the injections! Are you booked for surgery after this? That’s great I will do thank you so much for your time! Xx

Going to have a hysterectomy and he’s going to check everywhere for endo. It’s open surgery, initially he said robotic lap but changed his mind.

They didn’t do an awful lot for the pain, generally, I may backtrack soon as it’s got more intense today as I went shopping. There’s a definite chance I’ve been wrong for months 🤣

I used to use Emla cream before each one, it numbs the area. Not good with needles.

That’s really good that they will be checking because sometimes it is so easy to miss because of not checking in certain places! As I experienced something like this on my previous surgery. When is your surgery is it soon?

Oh that’s not good especially when your in pain and not being heard! Sometimes certain activities during a long period of time can cause it to flare up! Happens to me all the time. Oh right that’s good best to use something that makes you comfortable, I’m okay with needles don’t mind them it was just the after affect!

Xx

No idea yet on dates, hopefully soon.

It only takes about 15 mins of activity for it to start. This is likely a combination of endo and fibroids. I don’t think they are sure if there is endo adhesions on the fibroids.

Hello & sorry to hear you are feeling so grotty.

Have you just started Decapeptyl? This type of drug (a GnRH analogue) causes a “flare” of your Endo symptoms before it settles them by suppressing your body’s production of oestrogen & progesterone. The flare usually lasts a few weeks and can be quite rocky.

The manufacturer’s Summary of Product Characteristics (the SMPC) is their detailed guide to the drug and its effects. It can be found online here. Maybe download a copy and show it to your doctor and ask if it might be the expected flare that you are currently experiencing? Always good to have a copy anyway so you what what to expect from the treatment as it is a bit more detailed than the basic patient info leaflet you often get given and has advice regarding side effects and how the drug works etc.

This is the SMPC for the 3mg injections:

medicines.org.uk/emc/medici...

This is for the 11.25mg injections:

medicines.org.uk/emc/produc...

Just download whichever is the right SMPC for the dose you are being prescribed. If you don’t know the dose then print both and just ask your Dr.

x X x

Hi, thank you for replying!

Yes so I’ve been on it for a couple of weeks now and I was told that a flare up would happen so I did expect that. However, as no medication is helping either and the pain is not getting any better the doctors are reluctant to give me a second one as she said it could cause other problems.

Oh right that does make a lot more sense, I was told about this but did not think it would be this extreme! That’s great thank you so much for your time I will definitely read through and tell my doctor about this and see what else they recommend! I really appreciate this, thank you so much for your help! Take care xxx

I’ve had a similar drug (different brand) twice and the flare was much worse and lasted longer the second time around. Sounds like your Drs are being cautious and keeping a good eye on you though so see if you can have a chat to them again.

Best of luck, x X x

I’m sorry to hear that, it does make more sense that the injection causes flare ups for a short period of time so maybe I just have to weight it out and see how I go, as it varies between every individual. Yes they are really understanding and helping a lot thanks, and yes definitely I am going to if these symptoms don’t get any better!

Thank you so much and you take care! Xx

Hi!

I am very interested to follow this post as I had my first Decaptyl injection Monday and for the last few days my vision has been blurred, I feel light headed and a bit spaced out. It's a weird feeling!

How long have u been on it?

Jawaireyam
Jawaireyam in reply to Saliki

Hi thank you for replying!

Oh bless really how was it how did you find it?? Yeah I completely get you as for a whole week after my injection I was feeling very weird and had all sorts of symptoms similar to yours! It definitely is a very weird feeling

and I’ve been on it for couple of weeks now and the doctors may not give my second one anymore, due to the severity of pains and symptoms I’m experiencing at the moment nothing seems to help! Hope you start feeling better though! X

Saliki
Saliki in reply to Jawaireyam

Hey! The actual injection was fine, hardly felt it! I'm lucky compared to you because my pain is manageable and it's never been my worst symptom! I've got next week off work I'm sure that will help! 🤣

Hope you find some relief soon 😀

Jawaireyam
Jawaireyam in reply to Saliki

I’m so glad to hear that! And hopefully this should work out for you aswell at the end ! Mine went okay until it got sore and began interfering with the endo and then everything went downhill from there! That is great to hear I’m glad that it isn’t a major symptom for you, as it is definitely the worse when being in extreme pain and nothing helps!

That will definitely help !😂you need the rest sometimes!

Thank you so much I appreciate it! X

Hi I’ve been on decapeptyl for 3 months and feel better than I have in years. The tibolone seems to help. Yes I’ve had a few headaches but the reduction in tummy pain and increase in energy make it worth it for me. The first few weeks I felt rubbish but I was told it would take a couple months to level out. It’s worth hanging in there in my opinion. Drink lots of water and stand in a hot shower after taking analgesic helped alleviate my headaches. Hope you feel better soon xx

Jawaireyam
Jawaireyam in reply to Racasmo

Hiya thanks for replying,

Aw bless you I’m so glad to hear that, it gives me some sort of hope now, and yes the tablets that were given for side effects has also helped to an extent with the hot flushes etc but not as much tho. That’s great that it has helped you! Thank you so much I really appreciate it I will try to do that, I spoke to my doctor today and they are reluctant on giving me the second one due to this one making me very unwell but I will definitely try and see how it goes! Thank you so much! Xx

Saliki
Saliki in reply to Racasmo

This gives me hope! Thankyou 😀

Hi, I'm on this and it took till my 3rd injection for it to help with my pain, but now I'm having to take HRT some of my pains have come back (not as bed as they were though) not having a period is gd too 😊 my specialist did say it can take till at least the 3rd injection to work properly, this has been the best thing as nothing else has worked, I'm now waiting for a hysterectomy, gd luck and hope it starts to work for u sn x

Hiya thank for you replying,

Oh really gosh that must have been quite the journey to have waiting to see whether it would work but I’m so glad to hear that it has helped you which gives me some hope now! How do you feel on this medication? Are they helping the pains that your experiencing? as they were going to try me on some new ones to control my symptoms aswell?? I’m glad that it is working out for you though! This gives me a lot more hope as I am out of choice right now for pain management until my surgery and this was the last resort! So thank you for sharing this and hopefully your surgery works out all the best! Thank you so much I hope so too! X

Hi I have the same injection just had my sixth one. It has helped with the pain . I took a break and the pain returned. Used to give me a break as I had an ovarian cyst 5.5cm and endo , which shrink the cyst. I have recently had another injection I hope this helps . I have a monthly injection .

Hi hope your well,

Thank you for replying! Oh really that’s great I’m glad to hear that it is helping you with your pains! How have you been finding the injection with regards to the side effects? Have you been experiencing a lot of the side effects? And oh really I’m sorry to hear that, but in terms of the cyst shrinking that’s a good sign! both of my ovaries have also got cysts on them which has made the pain worse to an extent. Yes that’s the one I am on too the monthly injection! But need to see how I am before the second one! Thank you so much for replying I appreciate that makes more sense!

Take care xx

Hi what side effects are you experiencing?

Jawaireyam
Jawaireyam in reply to Dinky26

Hi,

Hope your well,

I’ve been experiencing quite a lot alongside my usual endo pain which has gotten a lot worse. I’ve had really bad sickness with burning sensation in my stomach spreading to my arms and my legs with constant pain in both legs making my legs really heavy and achy all the time. As well as, experiencing twitching and muscle spasms in my hand and feet. However they are not as bad as the other symptoms as i have also got discolouration in my hands which they said it’s quite bizarre to get. At the moment due to being in pain constantly,they are worried I might be getting a ruptured cyst so I am being monitored for that at the moment. Which side effects have you been experiencing?

Take care xx

Dinky26
Dinky26 in reply to Jawaireyam

I have the consant twitching in my feet and legs since the injection (I'm being sent for a mri because of it) my gyne said twitching wouldn't be caused by the injection but it must be if other people have it too! I also have horrendous back ache in my lower back and tingling sensations all over my back and stomach and down both legs and also all kinds of nerve pain in my legs like burning, stabbing, buzzing and sometimes it feels like i have frostbite in my calves and feet although not cold to touch. The twitches turn to cramps sometimes! I also have 2 cysts on my left ovary that are endometriomas, one is 2cm and the other is just over 6cm! We sound very similar!! Hope you find relief soon x

Jawaireyam
Jawaireyam in reply to Dinky26

I’m sorry to hear that but I’m glad they are doing something about it! Yes exactly that I was told that aswell, but of course it has to be as I didn’t experience anything like this before the injection! Aw bless you I hope they get that sorted soon! I completely get you as I am unable to sleep or do much because of the extreme pain going from my lower back and to my legs! I am so sorry to hear that your going through this, hope you find some sort of relief although it is definitely caused by the injection as I also didn’t have these kind of symptoms before! Oh wow bless you are they doing anything about that at the moment? I’m also experiencing that so I’m waiting for my mri to check as both of my ovaries got cysts which are causing a lot of pain! Yes we do and I’m glad I can talk to people who are in similar situations and understand me! Thank you so much take care likewise I hope so too! X

Dinky26
Dinky26 in reply to Jawaireyam

I think they are going to drain the cysts but she said there will be a wait due to covid. My gyne doesn't even know about the 6cm one! When I went to my appointment last week I asked her if she had my scan results from my last ultrasound and said no my gp hasn't sent them so asked me to get my results printed off and take them with me to my next appointment. So I did and when I looked at the results I was shocked as that 6cm cyst wasn't there at my scan 10 weeks before That! So it's a fast growing one.

What do the doctors think is causing your twitching? My docs think a herniated disc in my lower back although the pain didn't start there it was in my legs about 13 weeks before it went into my back! My twitching started 2 weeks after the injection and 2 days after I started my period with was very heavy and lasted 10 days!

Have they not gave you anything for the pain? I have pregabalin and also take a zapain at night time which helps me to finally sleep because I didn't sleep for months due to pain.

I'm scared about going into a 2nd lockdown and all treatment being stopped because of the pain I can hardly move my legs now and can't walk very far at all!

Hope your as pain free today as can be :)

Jawaireyam
Jawaireyam in reply to Dinky26

Yeah that does make sense as due to COVID so much has been put on hold especially surgery which we all need as soon as! And gosh that’s not good at all surely they were supposed to pick up on the fact that there is a 6cm cyst?, and that is definitely the case as I’ve had ones that have grew so fast in a matter of short time! They should always have an eye on things like this as it can be dangerous!

The doctors haven’t said much about the twitching as they were more focused on me having a ruptured cyst therefore I am going to contact them again regarding the twitching but it isn’t as bad as my other symptoms I would say! What is a herniated disc? And bless you that means it must have had an Impact as to why it spread. Bless you that’s a lot! Due to having pcos I don’t get regular periods so have had a lot of problem with that! Mine started a week after I think but it comes and goes I would say.

No they haven’t given me anything yet just the usual strong pain relief and medication for other things, and oh that’s great I definitely need something like that as I can not go to sleep till like early mornings!! And omg I’m the exact same as I am waiting for my surgery and kind of needed it ASAP! And I completely get that because I’m exactly the same I cannot even go out anymore! Thank you so much likewise take care xx

Dinky26
Dinky26 in reply to Jawaireyam

I have pcos too but I get my monthly periods, with that and endo they are really heavy and painful and my boobs swell and hurt so much for 2 weeks before af is due! I know now that could be because of the cysts.

My gyne had the results from my first scan but for some reason my gp never sent the 2nd scan which is ridiculous with the sudden 6cm cyst popping up! And my gyne won't know about it until 9th of Oct at my next appointment and only then will I be put on the surgery list. Honestly can't wait to get these cysts out of me.

A herniated disc is a slipped disc in your back. My gp thinks I must have a slipped disc pressing on my nerves. I don't notice the twitching as much if I'm active but when I rest and at night it's constant and makes going to sleep really hard.

Have you had any zapain? It's paracetamol and codine, it's good for knocking you out lol maybe you could ask gp for some?

Jawaireyam
Jawaireyam in reply to Dinky26

Oh really it’s not great to have both! Such a struggle and I got suspected adenonmyosis too but hasn’t been confirmed waiting for another scan, that’s good I really struggle with getting a period so been on the pill last couple of years now to get one! And omg that’s the same with me! Mine hurt all more just before I come on but sometimes it gets so bad! I was referred to have a scan on them because the pain was so bad turns out its the lymph nodes the usual ones. Oh I didn’t know that?

That is ridiculous! Because they should be aware and making sure they are consulting you and letting you know what’s happening! I can imagine especially having so much pain all the time and running back and forth to the doctors is so draining! Hopefully they should put you on that soon! Im on the list just because of Covid everything is so different!

Oh right okay that makes sense, bless you hope it gets better but I get that mine is a bit like that too gets worse at night when I’m the least active, but I feel like it’s more constant in certain places aswell.

No I haven’t had that yet, although I’m on other stronger ones which help to knock me out too aha, out but because of other issues I have been trying not to rely on too many medication at once because it can get a lot! But I may need to ask for some more!

Thank you! Xx

I’ve just had my second decapeptyl injection last week. First 3 weeks were awful! Increase in pain and headaches and the fatigue was ridiculous! I was missing work and could only sleep for days. But starting into week 4 huge improvement! Really glad I agreed to the injections. It’s just a stop gap awaiting appointments etc but it’s definitely giving me some good days! Stick with it! I’m not on any HRT as I can’t be for a blood clotting issue I have. So I’m just going all natural trying to help with the side effects but it all balances for me! Good luck. Hope it helps.

Jawaireyam
Jawaireyam in reply to Mheulgio

Hi, hope your well

Thank you for replying, and bless you I’m sorry to hear that but I’m so glad that they are helping you in some way, as this definitely gives me a lot more hope and hopefully I can also see through the horrible times until it gets better! I get that! as I’m literally exhausted all the time with severe headaches and nausea which makes me bed bound because of it! I’m so glad to hear that it is helping! That’s great that you are balancing what works best for you, this has definitely given me more hope to stick with it and see it through! Thank you so much I really appreciate this! Definitely hoping for the best, thank you likewise take care! Xx

Mheulgio
Mheulgio in reply to Jawaireyam

Thanks and fingers crossed for you as well!

Good morning

I am watching your post with interest. I was offered the decaptyl injection but refused it. I didn’t understand enough about it.

I am away to get an ablation and preciously had a lap.

My next step would be to try this injection and if it didn’t work a hysterectomy 😢I hope you start to feel a bit better in the coming weeks x

Hiya hope your well,

Aw bless you I hope it can help as much as it can as we all are in the same situation, oh really yeah I was really debating about getting the injection aswell however as I couldn’t take the pain I had no other options due to Covid I went ahead with it!

Oh really how did that go? Did they manage to take much out?

Aw bless you I hope it doesn’t come to that, this injection is quite significant as you have read there is a lot of side effects however everyone is different and react differently?! I will keep you updated if I go ahead with my second one! Thank you so much! I really appreciate it, you too take care xx

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