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[Lotus-Blossom]

I've been going through fibroids for 2 years with relentless appointments with the hospital gynaecologist at the maternity ward in Aberdeen.

Because of covid I can't see a radiologist about my Embolization so I have to continue with my injection for further 6 months until I get the Embolization.

I would like to know how other people are coping with it.

It is so frustrating.

[Alaine1 Administrator]

Hi Lotus-Blossom,

It’s a very frustrating situation at the moment in terms of treatment. A drug that used to be given for fibroids was completely withdrawn from use in everybody last year due to serious safety concerns after several women suffered harm. Another drug you could ask to try in the mean time and is used also for endometriosis and adenomyosis to help with symptoms is Zoladex. There are some other drugs in the same class that specialists also use. The type that is used sometimes differs depending on specialist preference. I’m on this drug myself for endometriosis and adenomyosis and have for a long time. It is licenced for 6 months of use although it can be used longer if under a specialist. The drug itself is given by an injection which is quite painful but it depends on the drug given. Propstap again is an injection but has a fine needle and is no more painful than a normal injection. Zoladex injects a small implant into the body which is why the needle is thicker. These drugs essentially put you into a chemical menopause so you can get menopausal side effects. I myself haven’t had any side effects but due to continuing long term with Zoladex due to treatment failure with other drugs have been given HRT which is safe for endometriosis suffers (and adenomyosis & fibroids). It is called Livial. It works in a different way to traditional HRT. The only thing I did suffer from initially was extreme bone pain but that may be helped by taking HRT from the start of having the injection.

Your GP may be comfortable prescribing this as many are but others may only be happy to do so after the consultant has said they want it prescribed. You could contact the secretary for you consultant and ask if this can be prescribed alongside the HRT Livial. Some will be happy to allow the GP to carry out the injection from the outset whilst others may want you to come into the clinic for the first 3 months. I personally would ask for gent monthly injection rather than the 3 monthly injection.

I hope this helps but don’t hesitate to post or private message me if you have any questions or concerns

[Lotus-Blossom in reply to Alaine1]

Thanks for those kind words. You have given me enough information to think about. After this month I have 3 more injections (Decapeptyl SR ) to go so I'm holding on to that thought. I have been on Prostap in the past and I didn't react well with it.

Thank you for responding. xx

[Alaine1 Administrator in reply to Lotus-Blossom]

Prostap didn’t work for me either, but Zoladex has. I hope you find relief soon. Have you got pain medications to use?

[Lotus-Blossom in reply to Alaine1]

I do have pain medication which does help.There is one thing I would like to ask out of curiosity. The injection I'm on did you find it gave you a lot of leg cramps because sometimes at night I'm getting it on both legs never mind one. It keeps waking me up at night.

I'm tempted to phone a doctor to see if they can do anything about it. I do exercise so I know it is not because I'm not moving. xx

[Alaine1 Administrator in reply to Lotus-Blossom]

No not cramps just a lot of bone pain for first 3 months. Yes maybe you could go to doctors. It could be to do with the injection especially if you do a lot of exercise. I remember when I was on Roaccutane for acne as a teenager you are told not to do a lot of exercise because of the potential for bone and muscle pain. Have you tried taking magnesium? I’ve heard that’s meant to be very useful for muscle pain

[Lotus-Blossom in reply to Alaine1]

I only do a little bit of stepping to get my strength back as well as abdomen exercises and gentle walking for 30 minutes so I know for a fact it is not because of exercise because I don't do a lot of it due to the fact I'm still recovering I just do what the physio says is right for me. When I look at the list of symptoms it is there. I find it weird that you mentioned bone pain because I do get it very slight at night. A week a go or two I started magnesium as recommended by my doctor a while a go but I need to give it a chance to work it could take a month or two everyone is different. xx