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Finally answers!! Adenomyosis Finally answers!! Adenomyosis

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Unread 07-16-2016, 11:20 PM
Finally answers!! Adenomyosis

Hi everyone,

I'm new this group but from what I've seen online from you all ---sooo happy to join!

I just had an exploratory laparoscopy (to diagnose what we had thought was endometriosis) done just over a week ago. I had planned to go on Lupron but after reading about it, got cold feet and decided that I wanted the doctor to SEE what she was working with before blindly treating it. The results came back and she said that I have Adenomyosis. She also mentioned Pelvic Congestion Syndrome in passing as well. (Maybe goes hand in hand?) Anyway, she gave me a sheet of treatment options and I have to say that I'm REALLY tempted / leaning toward evicting my uterus!!

I can't really put my finger on when all this started...I've always had bad cramps, a heavy enough flow, and it's always lasted about 5-7 days. I've never been one to use the "light" anything and have NO idea what a 3 day period is. IBProphen has been a good friend. I never though much about it. It was my normal.

Almost 4 years ago, I started to have issues on the pill so I went from pill to pill to pill. I'd have to check my medical records, but my guess would be 5-6 different pills. Every 3-5 months, I'd switch. Increasingly worse with breakthrough bleeding (having multiple periods per month as well as spotting other times), heavy periods, terrible cramps and a hot mess emotionally. Finally after I had a meltdown in her office (so she could see how bad it had gotten), I went on Mirena. I've been on that now for 10 months. The heaviness of my periods have been reduced but that's it. Still carry tampons with my everywhere since I always feel like I am PMSing. I still just crave greasy food, sugar, and comfort food ALL the time! Sooo hard to to loose weight!! (I just keep gaining!!!) I really started paying more attention to what I was feeling and when and I realized that I have about one week per month that I feel like a stable human. Some days walking to the parking lot from my car is too much. I try to walk without moving my painful and stiff...down my hips and into my legs. I often feel such a heaviness / pressure that I'm convinced my uterus is falling / trying to come out. My stomach bloats to the point that I look pregnant. So often I just come home and hit the couch because I JUST CANT. I read that exercising helps because if the progesterone you release so I do everything I can to push though it. Somedays I can, but some days I can't. Soooo over it!!!

My doctor is pushing me towards the Lupron and I still just don't have peace about it. So many risks for a "maybe" temporary solution. Same with the ablation or artery embolization....I just have a hard time treating the symptoms and not solving the problem. I'm sooo exhausted from trying these other things that sometimes help something and sometimes cause other things to become an issue. I don't want to waste any more time "hoping" for something to work. I want my life back!!! I know I'm jumping to the most invasive thing but it seems worth it.

So sorry that this was long winded. I'm so so exited to be able to talk about this.

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Unread 07-18-2016, 05:15 PM
Re: Finally answers!! Adenomyosis

Been there and did that...BC, Mirena, & Lupron that is. Two 3 month injections for suspected adeno. Doc was straight forward and said Lupron won't cure the adeno that only a hysterectomy would (though menopause seems to end it for many but I was only in my early 40s and knew I would not continue to suffer until meno set in).

Lupron is scary when you read about it...the possibility of side effects that is. Since the only definitive test for adeno is pathology after a hysterectomy, doc wanted me to try Lupron to see how I reacted to it as an "indicator" of adeno to warrant a hyst. Everyone is different in how they metabolize a drug, for me, the first injection (the 3 month injection) resulted in the hormone surge that is pretty much guaranteed for all women. They say it will likely increase pain symptoms for a day or two (it did). After that I only had a daily average of one night sweat that would wake me and no other side effects. The second round of the 3 month injection was a different story and for me I wish I didn't do round 2.

Good luck to you. We all have limits and without an alternative to provide you with relief you will know when the time is right for such a major surgery.

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