Terrified of Stopping Zalkya and fear of the coming onslaught

[Graciexx]

I had 2 great months on Zalkya. Light spotting and greatly reduced pain. Mentally v tough but felt better physically. Then came the bleeding every single day and cramping. Mood got worse. I’ve just made the decision tonight to stop taking it and I’m terrified of what’s to come again. There’s nothing other than a hysterectomy or Prostap available as options and both terrify me. My whole life is in ruins. Clinging on to my job, living from my bed- house is a pigsty! I’m in so much pain and feel so low that stopping this was my only option. I’ve been to the GP this week and been patronised about it probably being a good thing I didn’t have kids, had yet another horrifically painful trans vaginal scan and having CA blood tests today. There’s nobody to help. The endo nurse at the hospital is very nice but she cannot help, nor can my consultant. I’m at my wit’s end. Sorry to moan but I am so unwell and feel like I’m just left to cope with this and there’s no help hope left. My surgery 2 years ago made things ten times worse. It was excision but due to bleeding, the surgeon had to use ablation on my womb to stop it. I don’t know if this is why I’m so bad now. Is there anyone out there who is getting proper care and follow ups? If so, please could you privately message me and tell me who you see please. I’m under an endo centre but the specialists only work 2 days a month nhs!i paid to see a consultant in London but he says there’s no good outcomes for me. I feel like I can’t take this anymore. So sorry to post this as I know you are all suffering too.

[Tulip1983]

Oh, Gracie. I honestly don't know what to say. I'm so sorry you're feeling like this and hope that you can find the help that you need very soon. Sending love and best wishes.

[TogetherWeAreStrong Moderator Endometriosis UK]

Graciexx I am so sorry that you are feeling this way, please do not apologise. I have experienced what you are going through and some of the sentances could have come out of my mouth.

You are not alone, we are here for and with you. We may not be able to give you exact answers but we can help you our support, knowledge and understanding of what it is you're going through.

Below is a link for our UK website, with some really helpful information to help you cope:

endometriosis-uk.org/living...

I know that sometimes it's not even possible to take 1 day at a time, so I break it down further and do 1 task at a time, this does mean that sometimes I do have a lot of washing up! But I will do that in little shifts if that is what I need.

If you prefer to speak to someone, please see the below link for our Helpline, number (free) and openting times:

endometriosis-uk.org/helpline

Stay strong and connected x