FND and hormones

[Xani24]

Hiya everyone,

I was diagnosed with FND in 2021, my symptoms started in 2018 after many stressful life events. I’ve noticed my symptoms get worse just before my period. I’m perimenopausal so I started HRT (oestrogen gel and progesterone oral capsules). The progesterone seemed to cause a massive relapse last time I had it. Terrible brain fog, loss of coordination, tics and trouble walking/talking. I’m now convinced that for me, high progesterone triggers symptoms. I believe progesterone peaks the week before menstruation and then drops suddenly triggering blood loss. My doctor won’t let me take oestrogen without progesterone and has suggested the mirena coil instead of progesterone capsules. The thought of having a permanent source of progesterone inside me is frightening but without the Oestrogen I struggle to function.

Is anyone else having similar problems?

[210272]

Hi Xani24 there's some research into migraine and hormones as there is re hormones in people with vestibular conditions although it's underfunded and we deffo need more. I don't know if there's been any research re hormones and FND (but your GP should be able to find out). I am way past menopause (thank heavens) but recently got oestrogen only pessaries which have improved my sleep and general sense of wellbeing so it could be worth asking your GP to change their mind and let you trial those for a while. Trust your body - if something feels frightening there's usually a good reason for that and you certainly don't need fear on top of these other symptoms. There may be a good reason that the pessaries wouldn't help you but it is still worth asking about them.

[Xani24 in reply to 210272]

Hiya, they won’t prescribe me oestrogen without progesterone as it increases the risk of uterine cancer. I’m taking mini doses of oestrogel which is working for me. If I tell my GP I’m not taking the progesterone they will probably stop prescribing. I am not going to have the mirena coil. I’ve just had a relapse flare that has been particularly bad and I am exhausted. Do they only prescribe oestrogen pessaries after the menopause has ended?

[210272 in reply to Xani24]

Oh, OK but I would still ask if there's been any research into hormones and FND. I asked my GP the same question re the pessaries and she didn't know but didn't think so since they are prescribed for people who need to have smear tests but find them too painful (which is why I was prescribed them initially). Sometimes it's a bit of a post code lottery as to who will prescribe what.

[tinygianthuman]

hi there - I noticed the exact same thing and started on progesterone gel which I hated. But still was convinced of a hormone connection for me… my doc persuaded me to try the Mirena coil and it was a LOT better (not so extreme I think) and after 2 months I started oestrogen gel too. Symptoms definitely have improved for me… by no means gone, but much more bearable.