Zoladex Injections: I was just recently... - Endometriosis UK

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Zoladex Injections

Em15 profile image
Em15
10 Replies

I was just recently diagnosed with endometriosis. I'm 19 years old and will be starting zoladex in three days. I'll be on it for six months and then have robotic laparscopy to remove growths. I'm just worried about starting the zoladex. I go to college two hours away from my doctor and am not often able to go home due to marching band so I'll have to do my own Injections or find another doctor there. Looking for any tips or advice and experience with this medication!! Thankyou I'm advance 😊

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Em15 profile image
Em15
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10 Replies
JeanOsborne profile image
JeanOsborne

Hi I don't want to alarm you but it is against nhs guidelines for anyone under the age of 23 to be given Zoladex. This is due to the risk of bone density loss. You don't reach max bone density till about the age of 30. Please search on here for a lady called Lindle and ask her what you can do about the situation.

Gbhirst profile image
Gbhirst in reply toJeanOsborne

Not sure this is true? Im 23 and ive been having these since i was 21. Im only allowed them for 6 months at a time to try to avoid any issues with bone density. Having said that, It was advised by my surgeon rather than any other doctor. It definitely helps with the tightness and cramping of endo in your pelvis and im not allowed HRT due to other problems but i do suffer with hot flushes which arent very nice and palpitations. Best of luck x

JeanOsborne profile image
JeanOsborne in reply toGbhirst

Your bones don’t reach full density until age 23. I’m afraid your surgeon is breaking the rules. Have you even had a Dexa scan to see how your bone density is?

I don’t know what stage you are but if you have severe endo zolodex is unlikely to have any effect on it anyway. Are you under a general gynaecologist?

Gbhirst profile image
Gbhirst in reply toJeanOsborne

Yes I’m under a gyneo surgeon. I’ve had 5 laps to try remove endo they’ve removed it every time and separated adhesions / taken biopsies but it keeps coming back, on my last op a year ago they couldn’t get all of it as it was too deeply embedded into some of my organs. Zoladex is last resort and I had relieved from it using zoladex 18 months ago however this time round hasn’t been as effective. I haven’t had a scan no but never been told it’s necessary.

JeanOsborne profile image
JeanOsborne in reply toGbhirst

It is necessary. I would also advise you ask your Gp for a referral to a BSGE centre. These are specialist centres set up specifically to treat endo.

If your surgeon is saying they can’t remove some of it then that is a sure sign they are not qualified to be dealing with it in the first place.

If endo is properly excised from the root there is little chance (about 5%) of it returning. Also if done properly there would be minimal adhesions.

You really do need to see a specialist not a general gynaecologist.

The fact it keeps returning means you meet the required criteria to be seen at a centre.

Jess2303 profile image
Jess2303

I started on Zotalex when I was 20, I'm 21 now and just had my last injection after 9 months. It worked really well for me for 3 weeks, out of the 4 weeks in the month, my cramping came back the last week - like my body knew it was ready for its next one. The only other thing I would point out, is that I suffered from awful hot flushes, to the point it made me feel nauseous I was that hot, and couldn't sent l cool down.. Apart from that, it seemed to work, as I said, I was pain free most of the time, and haven't bled for 9 months - which is great as I have an active lifestyle!

Hope everything goes well for you x x x

wendywoo54 profile image
wendywoo54 in reply toJess2303

Hi Jess did you gain weight on the injections or any mood changes?

Jess2303 profile image
Jess2303 in reply towendywoo54

I didn't notice any weight change, no.. I got mood swings in the last week of the month, before my next injection, but they weren't terrible, I was more just irritated at everything!

Sarahjhill profile image
Sarahjhill

I have been on these injections now for 7 months and I have found them fab, like jess2303 I found that going into the 4th week I get pelvic and back pain which effects my legs. I didn't have many hot flushes but when they came it made me feel really nauseous but I found the night sweats and mood swings the worst. But I would still choose this over the pain of endometriosis.

Em15 profile image
Em15

Thankyou so much!! These responses have made me feel better :)

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