Decapeptyl and pain

[KimG21]

Hi, hope you are all well - sorry for bagging in about this again, I’m on decapeptyl three monthly injections to shrink a 7cm fibroid. It will be eight weeks come tue since my injection. Flare was bad but settled however was getting profuse bleeding episodes and passing large clots. Can’t have that as I was hospitalised last year and needed blood transfusions. I’m now back in norethisterone to help with my bleeding which has helped.

I’m getting quite crampy, ovarian and vaginal pains and feel this should have stopped? And now menopausal symptoms and not taking hrt. Is this a sign the fibroid is shrinking ? I just don’t know what’s going on in my body and not due a scan for at a least a month.

Knowing my luck it will be double the bloody size 🤯🤣

Any experiences on decapeptyl or similar or zoladex Lupron etc is welcomed 🙏💕

[Abise143]

I have this experience since I took Prostap injection on the 21st February. It has been heavy bleeding with big clots everytime. I became tired and weak and the tip of my fingers were freezing and changing colour. I am waiting to have a blood test now. I thought the blood test should have been been categorised emergency but it was prioritised as normal.

[KimG21 in reply to Abise143]

Thankyou so much for your reply 🙏aw what ashame I know how you feel it’s awful having these big horrible bleeds and they are scary, especially since they say the bleeding is meant to stop! I know there is a flare and bleeding within the first month is supposed to be normal-even bleeding through out is meant to be normal providing it’s manageable but not bleeding that’s so horrendous that it’s making us anaemic. Is it fibroids you have? How is your pain? I keep getting wired shooting standby pains down below. God knows I feel the scam is a life time away and I wish I just knew what was going on. When are your blood tests? And yes they should be urgent! Xxx

[Narcica in reply to Abise143]

Hi, you most likely have Raynaud’s syndrome. I have the same problems.

[Narcica]

Hi Kim, I am on Decapeptyl 3 monthly since last year July. I also have a Morena coil and for a while additional estrogen gel which I stopped not long ago due to side effects. For me Decapeptyl helps, but also for around up to 10 weeks. I have no bleeding and less cramps. Me personally had only a tiny difference after the first injection but by now it is helping a lot. I would recommend you to ask for chronic pain medication like amitriptyline that’s the only one that ever has worked for me. If after the next injection you won’t feel differently ask for a second opinion, blood test (hormonal) and different treatment. I have a personal blog on Instagram if you are interested about reading my experiences and advices (I am a clinical nutritionist); plate_coachHope this helped, all the best xxx

[KimG21 in reply to Narcica]

Hi Narcia, Thankyou so much for all of this. Is it fibroids you are on this for and if so did your fibroids shrink? Yes I think I will ask for pain medication as that can get me down and I am hoping after the second injection that I feel a difference 🙏glad they are helping you 💕are you getting surgery? Xxx

[Narcica in reply to KimG21]

Hi Kim, I have stage 4 endometriosis for 20 years now and fibroids as well, with a couple of other underlying conditions 😅 my situation is incredibly complicated. I have received a couple of surgeries during my lifetime and different hormone therapies as well. My latest surgery was in 2019 but after half year everything came back plus my uterus is now 9,5 cm bigger than it should be. It means that my endometriosis and adenomyosis is totally out of control. I was recently diagnosed with colonic diverticulitis as well. I’ve got all the good stuff going on😅

[KimG21 in reply to Narcica]

Oh my goodness - how in earth have you cooked with all of this?! The pain must be unbearable and heavy bleeding too 😢you just have a very positive attidtide and are very brave 💕I only have one big stupid fibroid and feel sorry for myself constantly 🤣xxx

[Narcica in reply to KimG21]

We cook with what we have 😬 I have been molested for years as a child, that is definitely created some of my internal deformities, plus on my mother side every damn female had some problems; for example she died of ovarian cancer. Also my father never took seriously when I was ill, I haven’t been treated for years prior to my first surgery when I was 17. It’s hard, but especially since my spondylitis is getting worse and I have to use walking aids. But I have great comfort in God and lovely people around me. xxx

We all have different battles; yours isn’t smaller than mines and never ever invalidate your pain xxx

[KimG21 in reply to Narcica]

So sorry you have experienced all of this, and I’m sure the sheer distress of trauma in your life has not helped with your health problems, no one should have to encounter what you have. What a wonderful woman you are and thank you for your kindness and help 🙏💕xxx

[Narcica in reply to KimG21]

All the best Kim, don’t ever let anyone let alone healthcare professionals belittle your suffering xx especially men xxx

[Jlg-]

I had similar problems with decapeptyl for first 4 months then the bleeding stopped but only when I also stopped taking tibolone. They thought it was coincidence and it just took 4 months to work but I went back on tibolone and heavy bleeding returned. Now not bleeding and have oestrogen patches and progesterone pills to try but waiting a while till busy work period has ended as worried about the bleeding returning. I have several fibroids, one 10cm which feels the same size but am hopeful for some shrinkage, also on list for hysterectomy as had no success for first few months but may reconsider if things stay stable. They say for many women it takes 3-4 months to work so hope it does for you. x

[KimG21 in reply to Jlg-]

Thank you so much yeah I am hoping it works as I can’t handle the bleeding anymore it’s just gone on for far too long for too many years. Glad it has stopped for you and totally get why you would hold of with the tibolone when you have work commitments - I came off it too as I wondered if that was contributing to the bleeding. How many months have you to have injections for? I had a letter through yesterday to need with surgeon but it isn’t until 8th august! My second injection is due beginning April, I’m hoping I don’t need to get a third as the dose is only three months which would take me to beggining of July. I’m worried it starts re growing before I see the surgeon for consultation… I’m not sure what to think. I know I have a scan to check progress in May but haven’t had a letter about that yet. Surely if it’s not reduced at all they will do surgery before then as I don’t want to stay on these injections if they aren’t working 🤯🤣💕xxx

[Jlg-]

I’ve had 6 monthly injections now (maybe it might help to move to monthly rather than 3 monthly) and it started working about 4 months on, but guess everyone’s different. Scan in feb showed not much difference but then bleeding had only just stopped then. Waiting list is till June-august for op but will have to weigh up risks if things are still ok then. You can stay on injections for 2 years with hope that natural menopause then takes over in my case ( I’m 48). Really hope they start to work for you. x

[KimG21 in reply to Jlg-]

Thanks so much 🙏you too I hope you go into the natural menopause and get relief from all of this 💕xxx

[Escapologygirl]

I was prescribed 3 x 3monthly injections of decapeptyl last year to induce menopause and ease my endometriosis, I had the worst side effects and my GP refused to do the 3rd one as I was getting worse each injection. I wouldn't recommend that treatment to anyone. Good luck with your journey.

[KimG21 in reply to Escapologygirl]

Sorry to hear this what a nightmare that must have been 🤯can’t say I’m loving it either just praying it works although I wish they would just operate and take everything out , I know that’s not ideal for everyone but feel it’s the right thing for me. Hope you are ok xxx

[Escapologygirl]

thank you and I'm beginning to wonder are thy only doing these treatments to fob us off and 'get out' of having to do any surgery at all.

Everyday is something new and either good or bad, I lost employment due to the side effects of the decapeptyl treatment and still trying to get back to some kind of normal again

[KimG21 in reply to Escapologygirl]

Yeh I have wondered this also - part of me thought that due to the back log caused by covid these injections would keep me out the way for a while 🤣it’s ridiculous, I haemorrhage when we I bleed at all and require blood transfusion - you would think that would be enough to get surgery faster 😞xxx

[Silver-vixen]

Hi Kim,

I don’t know if it’s the same thing but I’ve been on Zoladex since October last year for a 22cm fibroid and stage 4 endo. I had an appointment on Thursday and it has shrunk my fibroid to 11cm 🙌 I’m now due surgery on 4th April to remove the fibroid and excise the endo.

I don’t have any bleeding on it but severe hot flushes, night sweats and also insomnia if I don’t take over the counter sleeping tablets.

I would definitely contact your consultant if you are bleeding a lot or getting cramps. Eight weeks is giving it a good go so they may change the hormone therapy.

Wishing you the best x

[KimG21 in reply to Silver-vixen]

Thank you so much 🙏wow that’s amazing how much yours has shrunk, you must be so relieved! And fantastic about your op and you can get relief! Yeah I’m not too sure if mine will shrink plus had no hot flushes etc… bleeding was horrendous and went on for too long. The only thing that helped was they put me back in norethisterone. Hope it shrinks at least or this fibroid is going to be the end of me!🤣 Xxx