Esmya

[uplivity]

Does anybody have any experience of this? I've just stopped Prostap after 14 months & Gynae has advised that I can take Esmya for up to 3 months pre-surgery (TAH + BS possibly BSO) if I need to, to manage any re-emerging symptoms+pain. Grateful to hear from anyone that has taken Esmya.. x x

[nicolajones63]

Hi there, yes i had Esmya but im afraid it didnt work for me but others that i spoke to on here said that it had been brilliant for them.

I was worried about the possible side effects as i also had been on Prostap which caused me other stomach based problems ie acid reflux, food intollerances etc.

Are you at Norfolk and Norwich hospital as i wasnt aware of it being trialled anywhere else x

[uplivity in reply to nicolajones63]

Hi Nicola, thank you for your message. I'm being managed by the BSGE team at Colchester hospital and my Gynae surgeon from there has recommended Esmya, which my GP has added to my prescription (just before she left the practice which I'm devastated about... she has seen me through so much the past 18 months with referrals and getting diagnoses for me) in case I need it now that the Prostap has been stopped.

Where are you at in your process? Have you had surgery? x x

[nicolajones63 in reply to uplivity]

Thats horrible when someone you trust leaves, hopefully your new dr will be as good.

I took Esma when it was still being trialled so its probably easier to get now.

My latest surgery was 2 months ago when i had both ovaries and tubes removed. I know its early days but as yet it doesnt appear to have worked. Ive got a follow up appt next week so it will be interesting to see what they say.

When is your surgery due to be done x

[uplivity in reply to nicolajones63]

My last Gynae review was in end of November & I havenlt received a surgery date yet. My Surgeon said that he wanted to fully investigate the deterioration in my kidney functioning first, I guess because if Endo is the cause then he needs the full clinical picture so that he can co-ordinate and synchronise other relevant surgeons (colo-rectal, ?urology). I have my kidney scan tomorrow, and I'm waiting on a whole batch of blood test results, so I guess I'll know a bit more in the next couple of weeks. I antcipiate it will be March / April time.

I'm sorry you are feeling that your surgery has not been effective. Will you let me know how your follow-up goes? x x

[shazzy93]

Hi, ive been on Esmya 5mg for the last 3 months -last tablet tonight and im not looking forward to my period returning. Im hoping when i get my follow up consultation (hopefully very soon) they will at least put me back on it for another 3 months or just do the TAH BSO and get it out of the way. Im suffering with dreadful lower back pain and extreme fatigue and wondering if im ever going to feel able to do things again.

Sharon

[uplivity in reply to shazzy93]

Hi Sharon, it sounds like you have found the Esmya really helpful? What age are you and what are your diagnoses? I'm 46 and have just been taken off Prostap injections which I was having monthly for the past 14 months. They have been incredibly debilitating but at the same time it has been fantastic not to have periods and swelling and uterine + pelvic pain for 14 months. I understand that I will need to allow myself to have 2 periods before I can take the Esmya. I too am dreading the return of my periods after 14 months! I don't know how long it is going to take for the Prostap to work it's way out of my system and for my periods to return. It will be 4 weeks on Monday that I've been without the Prostap and I am already starting to experience some discomfort in my lower abdome (in my uterus I guess) and to the right side of my lower abdomen (my right ovary I guess) which I am worried about The lower back pain & exhaiustion you mention I too am experiencing now, along with waking suddenly every 45-60 minutes through the night due to palpitations, hot rushes and an urgent need to wee! It's exhausting. I am dreading the TAH + BSO but I just want to feel well and energised again and able to fully function again. It's been a hell of a journey so far and I know there is a long way to go yet.

From what I've been reading you can only take the Esmya for a max of 3 months and then you need to have a break, thiugh I'm not sure for how long, and then you can take again for 3 months - but you can only do this for a max of 4x3 months because fo the risks to your Endometrium & Uterus. You should also be having regular U/S scans of your Uterus whilst you are taking the Esmya.

Let me know how your follow-up goes?

Did you have any side-effects from the Esmya?

x x Helen

[Patricia2015]

Dear Helen,

I had four courses of three months Esmya during the past three years. It helps with adenomyosis.

However I was just diagnosed with deep infiltrating endometriosis and that is odd considering my Esmya use.

Now awaiting appointment endo specialist.

Take care!