First ask for this: ZALKYA (The only Pill For endo - available in UK since Feb 2020)

[endopositive]

Hello my fellow endo sufferers,

For the last 6 years I have struggled with Endo. Well obviously at first I thought I was going crazy and dying of something. Finally after my lovely doc had some training she asked me to go see the endo nurse, who booked me in immediately.

So, how did they know I had endo? She asked me 1 question about sex, do you have sex? My answer I had it a few times while trying to conceive my child back in 2011, not much before then and nothing after. Its just too painful. I hadn't even thought about it, or the 24 days of leave I took each year around my period time. I did not have heavy periods or clots, first just painful periods. My gynae put me on Diane full time to stop periods until I was ready for a baby. It masked the growth and symptoms. I had a c section due to complications, this caused scarring which endo loves to grow on. Then I was put on cerazette after the baby, the pain got much worse, I got fired from my job in 2014. I sat at home in pain, trying to walk everyday till 2018 when I had my lap.

Now this is where I expected things to get better but no, its incurable so you have to control it. NO oestrogen, or it will grow faster. I tried Zoladex and to be honest without the counselling following delivery of the news you will have this forever and be in pain forever, I don't think I would have survived. They have no idea what it feels like to have labour pains every day, whenever your body feels like it, diarrhea and vomiting.

Finally, they told me the only drug that works is Visanne but its from overseas. I was lucky I managed to get it and ship it over, but it costs a fortune. It really worked a simple pill with no oestrogen taken everyday and twice if you have vomiting and diarrhea. This is what people should be taking if they still want kids, why are they not telling everyone?

When Covid happened I couldn't get my medicine I was sure I was going to A&E. I was desperate and searched the web for the chemical Dienogest 2mg. To my great surprise I found Stragen in Surrey now manufacture this drug here. It is available on the NHS and all you have to do is ask. So I did and now I have it in my drawer. Well first I had to ask my lovely doc for a prescription and then phone boots, who said they had none, then phoned supplier who chased up and finally got it to boots. This month I got it from Pharmacy2u delivered.

What more can I say except that because of COVID news has not got around, Zalkya is here and it may not be a cure, or help with everything, but it means I didn't need hormone therapy or a hysterectomy. I am so lucky my gynae told me about this. Now I am telling you. If you have not tried this simple pill, start now before you do Zoladex. I wish I had tried it before Zoladex.

stragenuk.com/product/zalkya/

I hope this post helps someone, this drug really changed my life and I am so happy it is here in the UK now. Good luck beautiful fellow warriors.

[Lindle]

I put a post on recently about Zalkya. It has been licensed here since February but it doesn't mean it is yet available throughout the UK. In England it depends on whether an Area Prescribing Committee has agreed to supply it. In the devolved boards it will depend on the equivalent authorities there.

Hopefully it might help some but we should try not to raise expectations too much. It will depend on each woman's individual situation (endo severity), response to it, tolerance of side effects etc.

[AlessV]

Hi! thank you for the post! Do you know what kind of prescription you needed for Zalkya? I just spoke with my GP who said that they cannot get me a prescription even if my Endo specialist leaves them a discharge letter. now I'm not sure about the requirement... Thank you in advance

[Meg_2822 in reply to AlessV]

My private specialist prescribed it and I was able to run the prescription through my GP. Starting it today.

[Mampysam]

I have been prescribe this today. What side effects have you had?

[Hidden]

I'm interested in finding out more about dienogest. I'm on desogestrel (cerazette) along with Mirena. I listened to the EndoActive conference in Australia (YouTube recording), they have experience pairing dienogest with Mirena.

I read an article that many women have less spotting on dienogest than desogestrel.

I'll try asking a GP if I can try dienogest (zalkya), and see what they say.