To think I shouldn't be coerced into having a medical treatment

[Yourbodyyourchoice]

that I don't want.

I have epilepsy, and my menstrual cycle is one of the triggers for it. The AEDs have controlled my seizures for the rest of the month. Neurology have said that they have a hormonal and none hormonal treatment. I have been told I have to try the hormonal treatment first which I do not want to do. I am 39, i don't want the coil or an injection, and have been on POP along with a whole host of other contraception pills over the years, none have agreed and left me with unpleasant side effects. I was really relieved when dh had a vasectomy meaning I could come off it finally after years. I am very uncomfortable with the idea of taking any hormones at all.
I have told Neurology I want to take the clobazam bridging medication option, to take at the two points of my cycle. My cycle is like clockwork, regular, can pinpoint when I need to take it etc without issue.

Where do I go from here?

You’re correct they need to let you have the choice if they refuse ask for a second opinion or new referral

"I don't consent to the hormonal treatment."

Have they told you WHY they want you to try the hormonal treatment first? Is it less prone to side effects? Less likely to react with other drugs? A tenth of the price?

I'd ask their reasoning? Until then, I don't think you can draw an informed conclusion.

Has neurology not agreed to your suggestion?

They cannot force you to do anything, unless someone else has legal powers to make medical decisions on your behalf.

But i suppose they retain the right to refuse the treatment regime you do want and label you as a non complient patient.

Tricky one if they are refusing to do what you want.

Personally, I would try the treatments offered and decide whether I wanted to co time them rather than just say no off the bat. I say that as someone with a long term condition who has been on a variety of good and not-so-good medications over the years.

They can’t make you. You need to clear as to the reason why and the side effects they cause.

What did the Neurologist say when you told them?

Are they aware of your gynaecological issues?

I have a feeling it is cost.

Yes, I did tell the specialist nurse, but she talked over me, didn't listen and has written in the letter that I have agreed to taking hormones, which I didn't. She had made other mistakes in this letter, getting meds mixed up etc.

Thank you, I have thoroughly researched it, and there is no reason for not giving me the none hormonal treatment. The hormonal treatment can actually make one of my AEDs less effective as well. I want to speak to the consultant who did say awhile ago they could try this bridging medication, but the nurse is now dealing with this. Do I ask for a 2nd opinion?

You need to very specific. Ask clearly why they prescribe the hormone treatment first. And wait for an answer. You need to understand why.

Then state clearly that you have issues with hormone-based treatments in the past and are reluctant to go there again.

If the non-hormonal product is only offered as a back-up, your choice may be try the hormone-based medicine or refuse treatment.

Yes@Yourbodyyourchoice ask for a second opinion.

Could you call the Epilepsy Action or Epilepsy Society helpline for advice regarding hormone/ non hormonal options versus Clobazam, plus any side effects on you / your AEDs, then put your preference in writing to both your Nurse and Consultant?

I wouldn't have thought it was the cost, clobazam isn't that expensive I don't think. I know when DS was on it it had a massive impact on his cognitive function ( he's on clonazepam now which is better for him) so maybe that could be an issue they are trying to avoid?

That is surprising, because Clobazam is less sedating than clonazepam. It is the bridging drug of choice for catamenial epilepsy due to this. Maybe something to do with drug your ds is already on, and the fact he is takingot every day/dosage etc? This would just be a small amount for the two points of my cycle, I wouldn't be taking it every day.