I have known many people to have lots of problems with the Mirena. If it is causing you more pain then it did without I would talk about having it removed. You just gotta keep trying to find something that works for you and everyone one is different. I do have a close friend of mine who's periods have never been the same as well as pain since taking zolodex, however a lot of your pain could always be Endo that wasn't removed properly or missed or adeno itself.
I am thinking you need to find a good surgeon. that specialises in Endo that can do excision surgery not just laser. When you excise the disease out you get the disease from the root. If only laser is used it will only get the surface.
If you are interested I can find you one that is close to you I just need to know where you live, like what state in the US or if another country what province or city etc. It will help me be able to narrow down a good one in your area that is reputable in treating this disease not just a regular gyno.
Thanks for the response!
I live in New Zealand. I called the endometriosis hotline here and they told me my gynaecologist was one of the leading experts in the country. I'm not sure if there is anyone better suited to my case, in this country at least.
In the surgery, he found no evidence of endometriosis outside of my uterus, only endometrial tissue inside the muscle which couldn't be removed. This lead him to diagnose adenomyosis (which he considers to be a type of endometriosis but I know that's up for debate.)
Interesting to know about zoladex having that effect... I had no idea it could cause such an adverse reaction but I suppose all treatments have that risk. I would like to have the mirena removed but both my gyno and my regular GP think I should wait as I have exhausted most of my options. Thing is, I don't know what kind of treatments are still available to me if this fails other than having to resort to a hysterectomy.
Update: The pain has been significantly reduced after a course of antibiotics. Looks like I may have had a pelvic infection that was irritating my uterus and causing the constant attempts to expel the mirena.
I am so relieved I caught it early!
It is good to hear that you are feeling better. If you do not like something your doctor suggests put your foot down and express it strongly. Bring in an extra person to help support what you have to say.
In my personal walk with endo I have chosen not to treat it with any birth control or any sort of drugs, only the lap surgery. I also use diet and exercise. I understand not everyone chooses this, but I feel the most healthy and energetic this way. Good luck on your journey!
Yes, all this birth control is hopefully only a temporary treatment. I would prefer to be on no medication at all! But that's unlikely. I want it at least cut down to one simple treatment.
To update my recovery journey for anyone who pops by; the Mirena continued to cause issues for 8 months up until the moment it was removed. The only treatment I had yet to try was a hysterectomy, something my gynecologist outright refused to perform. I found a new gynecologist through my GP who looked over my records and agreed that a hysterectomy was the way to go. I've been drug-free and pain-free ever since :)