Newly diagnosed and offered Zoladex injections with or without Tibolone?

[Kerryd27]

Hello. I am 40 and I have suffered for around 16 years but has became worse the last couple of years. GP always put it down to IBS. I finally seen Gynae earlier this year and I had an MRI in September which confirmed endometriosis in the uterine cervical junction and uterosacral ligaments within the pelvis. I have been offered either Zoladex or Laproscopy. I didn’t know much about Zoladex and the consultant thought this was the best option at first to see if it helps my pain as I am in pain around 2-3 weeks out of the month so I have went with this and will be reviewed in 6 months. After reading bad reviews I am now wishing I asked for laparoscopy but there is a long wait. He couldn’t offer me both.

I haven’t booked my first injection yet. I Spoke to the GP today with my concerns of the side effects as I already get hot flushes and feel low/mood changes during my weeks of pain. He could prescribe me Tibolone (HRT) and I am thinking I should give it a go even if I only last 1 month.

Does anyone have any good experiences of having the Zoladex injections alone or with Tibolone? I can’t decide if to get the Tibolone or try without first. Looking forward to hearing anyone’s stories/advice 😊 Thank you

[Pelvic_pain]

I had zoladex for 3 months in preparation of surgery without adding back HRT. I had hot flushes but nothing unbearable at all. However, the difference in pain relief for m the Zoladex was amazing. I know different people react very differently, so it really is a case of trying and see if any joy. 1 thing you note, laparoscopy waiting lists will always be longnon the NHS, so you may want to consider asking to be a n that waiting list & taking Zoladex for pain relief in the meantime. This way, your hopefully further along in the waiting list if needed which can easily be cancelled if no longer required. In my case, my condition worsened rapidly within 3 months so if anything like me, you'll be glad yo shave any time off wait list in the end

[Kerryd27 in reply to Pelvic_pain]

Hi thanks for your reply. I feel a bit better about getting the Zoladex injections I definitely need something for this pain. I have actually rang Gynae today and asked if I can be put on the waiting list as well for laparoscopy and they said yes so I am pleased about that. Sorry your pain worsened so rapidly, it’s so frustrating

[Pelvic_pain in reply to Kerryd27]

You are very welcome. I'm so glad you can be on both treatment pathways at once. Really hoping this keeps all your options open as quickly as possible. Good luck whichever pathway you end up following

[ChicagoGrey]

I was also unsure, I had a laparoscopy and endo was confirmed and treated, the pain was minimal for about 5months then returned, so I had a trial of zoladex for 3 months, apart from some intense night hot sweats it was amazing, no bleeding or pain.

I was reviewed and given another 6 months of zoladex, this time with add back ( Premarin) and no hot sweats, no bleeding and no pain.

The guess it’s different for everyone but I’m so glad I gave it a try.

I had a break of about 9 weeks between the trial and the 6 months of zoladex and the pain returned, so glad to be put back on it. I’m unsure what the plan is post the 6 months and and not looking forward to the pain returning while a decision is made.

[Kerryd27 in reply to ChicagoGrey]

Hi Thanks for your reply. It’s good to hear the Zoladex was good for you. I am feeling better about getting it now. Shame your pain returned after Laparoscopy. I have managed to get put on the waiting list now for Laparoscopy. I hope they have a good plan for you once you finish your 6 month injections.

[BloomingMarvellous]

It's nonsense that he can't offer you both. Zoledex was not be used as a long term treatment due to its long term side effects. It's meant as an interim holding device before proper surgery to remove endo. Education on the importance of sex hormones as you age is key here as this is a significant trade off ! ( Try the resource on Balance App here) Please get yourself familiar with NICE treatment pathways for endo as often we are misdirected and short changed because of waiting lists.

[Kerryd27 in reply to BloomingMarvellous]

Hi I know he said he would review me in 6 months and then decide. But I have called today and asked again if I could be on the waiting list as I am worried and they have said they will. I will have a look at the NICE treatment oathways. Thanks.

[Chartolfrey]

Ive been on zoledex 8 months now.1st few months were hard not gonna lie still pain still bleeding but after injection 3 i felt like i was getting control of my body again.

I jad tiberlone hrt at injection 2 and i still get some sweats and the insomnia is hard but my pain is hardly anything and no periods since injection 3.

Im waiting for hysterectomy been told 12-18 months in the south of england

[Kerryd27 in reply to Chartolfrey]

That’s a shame it took so long to take the pain away. I might try the Zoladex and if I feel awful I will add the HRT. Not looking forward to it I really hope it helps the pain. I hope all goes well for you getting the Hysterectomy.

[Chartolfrey in reply to Kerryd27]

Thankyou. Just remember every woman is different. Some people it works quick amd some it doesnt but my consultant said takes 8-12 weeks and then i felt bit normal.Hrt def helps the side effects for me.

Good luck

[Sunset-lady]

I would try zoladex but take it with HRT. Tibilone isn't really HRT so you might not feel great on it. It takes a while to settle but it's a good last resort for many of us x