Feeling down, frustrated and zoladex - Endometriosis UK

Endometriosis UK

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Feeling down, frustrated and zoladex

Silverskylark profile image

Hi Everyone,

I have stage 4 endo and it is also present on my sigmoid colon and probably by now who knows where else. I was put on the waiting list for surgery to have everything removed back in 2019. My first dealings with zoladex was for 15 months whilst waiting for a surgery date amongst the chaos covid caused. I started to react to the injections and was taken off them (Feb 2021). After a up and down 2021 with pain sometimes unbearable and by Christmas 2021 my periods were back with vengeance it was suggested I go back on the zoladex but without HRT.

Since Feb 2022 I have had the bumpiest journey, my pain has been incredible at times and most months I have had a bleed of some degree or other, my libido is flat as pancake and when I feel more in the mood, you can guarantee I start a bleed/flare up!! My husband has also noted that I have been incredibly down and "lost my beans" and I must say I agree completely, my mental health has definitely not great.

I had my 3rd pre-op assessment at the end of April, but my record was put on hold as I'd had a chest infection and was waiting for an x-ray. 5 weeks later, just for peace of mind, I phone to see if my pre-op had been released and if there was any further information regarding time scale. It hadn't even been looked at!! So frustrating and not helpful for my current state of mind.

I feel so crap and so unhappy and scared of the op if and when it eventually comes and scared that I will feel like this forever once my ovaries are removed and living with no hormones. Or is most of this rubbishy feeling the side affects of the zoladex?

Do I just come off the zoladex and cope with the endo as it was? Do I come off the waiting list as I seem to not be getting anywhere and constantly feel in limbo? Or do I just sit it out and try and speak with my GP and see what they say/suggest?

Anyone else in the same boat?

Apologies for the long post, just need to rant and get things aired.

Thank you xx

13 Replies

Hey I am sorry you are struggling so much. I hope you find some relief. Are you still having pain flare ups whilst being treated with zoladex? X

Silverskylark profile image
Silverskylark in reply to SK2021

Hi SK2021, thank you and yes this has been a tough round with zoladex. I have still been in pain and get flare ups and possibly as this time they didn't put me on HRT as I don't remember being this bad last time. Although I did still have some side affects then. x

When you say you are awaiting hysterectomy I assume what you are having is complex endo excision with a hysterectomy and BSO at the same time. There are great delays in some of the specialist centres as they have to get all of the multidisciplinary team together including colorectal. But it must be so hard. I should keep in touch with the centre's specialist endo nurse and if you are in England it might be worth contacting PALS to see if you can be prioritised.

You can have hrt aslong as it has progesterone in to stop endo coming back. You’ll need oestrogen for your bones & hrt. Did they not offer normal hrt or tibolone while on zoladex? It’s the menopause that’s causing low low oestrogen can really effect you mentally x

Silverskylark profile image
Silverskylark in reply to Holpol

Hi Holpol, this is my second time on zoladex and they didn't prescribe tibolone like before. I think maybe because I heard there was a shortage of HRT so perhaps that was why? Or they thought they would get me booked in before too many symptoms came back, but 6 months in and still no sign of a date I think you maybe right and that would explain why I'm struggling.

Thank you for highlighting that I will speak with my GP and see if I can be put back on it. X

Holpol profile image
Holpol in reply to Silverskylark

No shortage of tibolone only the gel hrt. There’s lots of different hrts. Your surgeon should of discussed this with you. The menopause is so hard never mind a chemical one. Hope you get it sorted xx

Silverskylark profile image
Silverskylark in reply to Holpol

Oh great, so that doesn't really explain why he didn't recommend it this time then!? I have only spoken with him twice on the phone. His secretary is like an armed guard when I call the hospital and they're not very communicative. Often wonder if they are just fobbing me off. Anyway, called my GP surgery today and if all goes well they should be re-prescribing the tibolone and then hopefully I will start to feel slightly more normal!

Thank you for your support xx

Holpol profile image
Holpol in reply to Silverskylark

No probs. I know girl who had patches so there are options if you don’t get on with tibolone. At my hospital there’s a nurse specialist for endometriosis I can call. Maybe call the hospital switchboard see if there is one. It’s bad your being fobbed off. The secretary could at least help xx

Sorry to hear you are feeling so confused and uncomfortable. I understand completely as I have felt many of those feelings myself. I am still also awaiting an operation date and have calmed my thoughts and found other ways of taking my attention off the worry. I know this is easier said than done when you are experiencing days of immense pain and fatigue. Try to enjoy the things that make you happy and hopefully someone will be in contact with you with your concerns soon.

Hi Strongspirit7, thank you and I am sorry you have been in the same place and are also still waiting for surgery. I do a lot of crochet, I find that can fill my head with counting and where am I in the pattern. I also draw and paint. All good distractions and fairly productive. Pottering in the garden or around a garden is also good and if I'm in pain occasionally moving about can help. It's the fatigue days or moments that are a bit more tricky to fill. Hopefully there will be help for us both soon and we can then get back on feeling more comfortable. x

That's absolutely brilliant mindset and lovely hobbies that take your mind off it. I used to love performing with my choir but it got too much. I also enjoy gardening now and improves mobility, love music and on the really bad fatigue days it's absolutely ok to lay down and sleep because that is what your body is telling you to do ☺️👍

Maybe one day you can be back to singing/performing with your choir :-) I'm a definite doer of things and I'm still learning even after all these years that it's OK to lay down and sleep or rest when my brain refuses to focus and my body just hurts. Not that I used to buzz round and do a million impossible things before breakfast! But I had a job and found it easier to socialise etc.

I had to leave my job because of my health (not helped by the job) with the thinking I would have had my op after a short while and be back up and well and able to work again. I think my brain just can't compute this big change, although I am much better out of the job I had anyway!

I try to remain positive as best I can and enjoy the time to do my hobbies and look after the house better. I hope you enjoy your gardening and listening to music, both very soothing things to do. x

Yes, I also found juggling work, family, house, choir, children difficult and my body finally refused. Although I'm used to dealing with health conditions with clients when you know you are dealing with something yourself I couldn't fight the pain, fatigue and brain fog on top of Covid. Sometimes you need to take yourself out whilst trying to find a way to remain in control of situations. Do what you can when you can and don't feel guilty if you can't do some things. Sometimes you have to think things get worse before they get better and keep smiling. It's ok to slow down and look after you 🙂

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