3 month decapeptyl/ triptorelin

[Lily1986]

Hello.

I suffer with stage 4 endometriosis.

6 weeks ago I was given the 1 month triptoerlin/ decapeptyl injection which gave me terrible side effects which I can still feel now.

Also used HRT.

It has helped with certain elements of pain which I can feel returning now as it wears off.

I’ve had tremors, felt freezing, very forgetful, bad tempered and depressed, migraines, exhausted, bones ache & awful spots.

I am due my second 1 monthly injection tomorrow (later than it should have been due to high demand at hospital).

Anyway the hospital have rang and said if I still want it they will only give me a 3 month injection to prevent repeated hospital visits during covid crisis.

I’m really scared of this and very close to cancelling the appointment.

Does any one have experience of the 3 month injection? I’m terrified it is going to intensify the already horrendous side effects.

I’m still having to take strong pain relief for the nerve element of my pain so I’m very tempted to just not have the injection and learn to deal/ manage the pain this way instead.

[Moon_maiden]

I get the Zoladex at the GP surgery, maybe have chat with GP.

[Sausage_Dog_Lover]

Hello, I think it may be different for everyone but I’ve had it before immediately after an op to remove a lot of endo tissue and it seemed to really help me. Only side effects I experienced were hot sweats which of course was a small price to pay for the eradication of the severe pain. Do you do yoga or ever tried it? It seems to really help me with everything, might be worth giving the three month injection a go and researching some ways you can help yourself with the side effects, yoga, mediation for depression, a slight change in diet,

I’ve been juicing with fresh ginger which seems to make me feel better, creating a good routine. All really little things that can make a huge difference I found. It’s crap because it seems there is no total rest bite from it, there is always a ‘but’ when it comes to treatment and I guess we have to choose which is less uncomfortable xx

[Lily1986 in reply to Sausage_Dog_Lover]

Aw thank you for your kind and helpful message.

I rang the hospital to cancel the 3 month injection, I was too scared of the side effects.

Anyway they rang back and offered another monthly one which I went ahead with and have handled a lot better than the first.

It does seem to have eased certain elements of the pain and I’m guessing the pain I’m left with is the nerve element.

I have been trying some gentle yoga and been speaking to a therapist weekly who is going to help teach me some relaxation techniques.

How is your pain now? I noticed you’d had one ovary and both tubes removed like me.

I also have a cyst growing on the remaining ovary.

Do you have any pain on the side where they removed the ovary?

This is where the majority of my daily pain is and down my leg, buttock and back. It’s been there since the last surgery.

It’s nice to hear of other people in the same situation although wish it was for a happier reason.

Best wishes xxx

[Sausage_Dog_Lover]

My pain was ok for a little while but the last few months has started to become unbearable again ... it seems to be concentrated around my remaining ovary at the minute but I’ve had it in the upper part of my abdomen too. I’m back on the monthly injection now too which seems to be easing off the pain a little every day, my stomach is still very bloated and hard currently though so no jeans or anything with a waist band for a while!

It is very comforting to know you are not the only one having to go through it all! It can be very difficult to live with at times xx

[Lily1986]

Ah I’m so sorry to hear that. It’s just so horrible isn’t it?

Before the injection I was getting this awful pain under my rib cage, which I thought might have been a stomach ulcer or something. But it has almost gone since the injection which makes me think it could be endo.

I also get this ripping pain from near by belly button, down to my remaining ovary and womb which comes in constant waves. Luckily that has subsided a little since the injection too.

Very few people understand just how excruciatingly painful every element of this disease is.

Xxx