Adenomyosis Hormones not working - Endometriosis UK

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Adenomyosis Hormones not working

Lauramikks profile image
7 Replies

Hi

I was diagnosed in 2015 and have pretty much got on and suffered it to be honest.

I went to the doctor in March after having enough of the pain and bleeding/discharge,

Dr put me on mini pill which i bleed for 3 months, she has now switched me to the combined pill (tricycling) and it was bliss for 6 weeks then i started spotting and cramping this has been going on 3 weeks some days i get nothing and then it starts again.

I just dont understand why they arent working for me. 🙁

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Lauramikks
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7 Replies
Tangoandmax profile image
Tangoandmax

Hey, I have endo and Adeno, I’ve also had continued bleeding on contraceptives. I’m now trying Mercilon which is supposed to a be a low level of hormones hoping this is kinder to me. This is my third, previously I’d had progesterone only (absolute hell) and Microgynon (did not help, when historically I’ve had no issues with this one). Just wanted to say you’re not alone, it’s rough but I’m hoping that I’ll find one that works eventually. Not sure what the alternative is!

Lauramikks profile image
Lauramikks in reply toTangoandmax

It's miserable isn't it, the options were the two pills, the coil which she was really pushing but i really don't want it. The gynae is a year wait but wont see me until i have tried every other option, why that is when you already have a diagnosis is beyond me.

Tangoandmax profile image
Tangoandmax in reply toLauramikks

They asked me to double dose the progesterone but I felt suicidal. Was so drastically emotionally not right, I was throwing tantrums at work. 🙈🙈Absolutely no way was I even trying. My gyne consultant agreed if the progesterone only hadn’t worked for me previously (I also have tried the implant in the arm that was just permanent bleeding) so the coil wouldn’t be the best bet. I’m also a complete control freak and after the implant saga there was no way I was trying something I couldn’t immediately stop myself if needed.

I’m completely new to being actually diagnosed, I’m eight years of symptoms, four weeks post op which confirmed endo. I’m appalled by how challenging it is for people to be seen/treated who are already diagnosed. It’s chronic, they know what the problem is, it’s not magically going away. Why is it still such a challenge? Bizarre x

Lauramikks profile image
Lauramikks

I tried the double dose but it just made it worse, i know the thought of it being there and theres nothing i can do isn't worth adding to the anxiety.

I had a ultrasound in 2015 as i had bleeding in between my periods and the Dr called and said you have Adeno no explanation no offer of help 🤷‍♀️ my periods although they have always been bad have got worse in the last few years.

I wonder if its to do with underfunding like everything xx

Tangoandmax profile image
Tangoandmax in reply toLauramikks

Surely there should be more investigation? Is continuous bleeding norm for Adeno? They took a biopsy during my laparoscopy to make sure nothing dodgy is going on, results were normal. I annoyingly had a cervical ectropion, so they couldn’t be sure if bleeding was that or the uterus. The cervix has been treated now so I’ll soon know. I was hoping this would be the end of it! 😫

The mini pill (desogestrel) wasn't working for me either. I was on it for a few weeks but it worsened my symptoms. Heavy bleeding, severe bloating, pain, weird numbness in my legs. I stopped taking it a few days ago.

Lauramikks profile image
Lauramikks

same for me i tried 3 packets and it didnt gwt any better, now trying combined pill not as much bleeding but still spotting most days. Have taken 3 packets back to back.

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