Adenomyosis & Mirena

[Ahcharr]

Two years ago, I attempted to stop the heavy bleeding and bad cramps I was suffering as a result of my irregular periods. I have tried three different contraceptive pills over the past couple of years, all caused the bleeding to be light but constant. After bleeding for three months, I was prescribed Primolut N, which brought the bleeding back to irregular periods. I was referred to a gynecologist who did an ultrasound only to find nothing and send me on my way.

My second gynecologist was more helpful and had no doubt in his mind that I was suffering from endometriosis. When Zoladex failed to induce menopause and I continued to bleed despite continued use of the pill, I went back on Primolut until the gynecologist decided it was time for a laparoscopy. While I was under he did a tubal patency test and inserted a mirena.

Once I awoke, I was told that the tubal patency test had failed (my uterus had instantly contracted and the dye was nowhere to be found) and that I had adenomyosis. Since the insertion of the mirena, I have been in constant severe pain. I can only assume this is caused by repeated contractions of my uterus trying to expel the foreign body. I had an ultrasound last week that confirmed it was still in place and just had another Zoladex implant injected. I am still taking the pill and still bleeding.

Has anyone else ever experienced similar problems? I have just been prescribed some pretty hard opiates to manage the pain but long-term use is out of the question. I have had the mirena in for two months but both my gynecologist and GP want me to wait it out for a further four months before deciding whether or not it works for me. I can't even manage to work for an income like this... Advice?

[Ahcharr]

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 :)

[Ahcharr]

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.

[skepticalpeach]

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!

[Ahcharr]

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!

[Ahcharr]

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.

[ticked]

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.