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Second opinion-Adenomyosis (updated 9 months later) Second opinion-Adenomyosis (updated 9 months later)

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Unread 08-21-2012, 01:09 PM
Second opinion-Adenomyosis (updated 9 months later)

Hi everyone, I am new to the site, but thought I might could get some advice. I had a c-section in 1998. I have had a Paraguard IUD since 2008. Ever since my c-section, I occasionally have these pains in either or sometimes both sides right around my hip. Have been to the gyno on a couple occasions and its always ultrasound followed by we don't see anything. So after that happened a couple times, I decided it must be normal for me. One weird thing is I got my IUD and my periods never got heavy or anything other than normal for the first year, however after that first year they are getting worse and worse. I have what I consider heavy bleeding with lots of clots (sorry if it's too graphic). I don't like taking the pill because I have no libido whatsoever and it makes me angry and crazy. The bottom half of my stomach is almost always at least slightly tender. Last year, I had an ultrasound that showed no fibroids, but an enlarged uterus (11 cm) and was told it was probably adenomyosis but nothing to worry about. Well for the past couple months, sex has been uncomfortable at times and especially if my stomach is being pressed on. Then last week, I thought I was ovulating because I had pain in my right side. After a day it quit, but then pain in my left side that lasted for five days. My question is could this be related to adenymosis? I have insurance, but a really high deductible ($2800), so I am trying to be cautious and possibly wait it out? I would not mind having a hysterectemy as I am through with children, but the cost deters me.
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Unread 08-21-2012, 09:38 PM
Re: Ideas

I'm shocked your doc said it could be adenomyosis, but nothing to worry about. I had my hyster for asdenomyosis. All the symptoms you describe can be due to adenomyosis. If that is what you have your symptoms can gradually get worse until your quality of life is so bad you'll be begging for a hysterectomy. There is no treatment for adenomyosis , just pain meds to control pain. No cure except hysterectomy. It can be debilitating. Do some research on adenomyosis and talk to your doc at your next visit. Adenomyosis can not be detected or diagnosed until after a hysterectomy and the pathology report comes in, unfortunately. All your doc can do before hand is run tests and get an educated guess as to adenomyosis.I had a high insurance deductible too. and can say that it was worth every penny to be pain free. It cost me $5000 ( deductible and out of pocket maximum for year)
Unread 08-22-2012, 05:05 AM
Re: Ideas

Thanks for the quick reply. When my doctor called with the results of my ultrasound, her words were-Your IUD is in place, but you have an enlarged uterus, probably due to adenomyosis. If the pain gets too bad, we can try a hormone releasing IUD (Mirena), but at this point I wasn't in enough pain to do anything yet. Then I asked her how enlarged was it and she said 11cm. That was about a year ago. After doing some research, I am wondering if I have "other" symptoms that I didn't realize could be from the adenomyosis. Like lower back pain, but not always on the same side, and down around my hip. Also, I have these pains in my lower back that feel like light labor pains and I wonder if this is it too? I have always figured my back issues were from me being overweight, but now maybe it is a combination. I am very overweight and was also wondering if I lost weight would it help the symptoms? Sorry for so many questions!
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Unread 08-22-2012, 07:16 AM
Re: Ideas

I had the back pain also. I most likely had adenomyosis for quite some time. The symptoms progressively got worse. I'd ask her about the hormone treatment and see if that keeps it under control for now. My doc had told me if I stalled until menopause I may not need a hyster, but I had been in such debilitating pain for the 3 years prior to my hyster I wasn't waiting any longer.If your in the early stages you can stall, but 11 cm seems pretty large to me, it doesn't seem so early stage, but I'm not a doctor.
Unread 08-22-2012, 08:13 AM
Re: Ideas

I am seriously considering stalling because I am scared of the changes in sex drive and that type of thing. However, I am 35, and it kind of scares me about the new healthcare things that are happening (I mean, I know what I would have to pay now, and I don't know about the future and I also don't know how long I would have to wait or any of that). I guess I will see what they say at the next visit (I am due for one now, just haven't made the appointment yet).
Unread 08-22-2012, 08:23 AM
Re: Ideas

If your not afraid of the hormones try that. I chose not to go the hormone route, my doc didn;t think it was a good option for me, but it is an option that may work for you.
Unread 08-28-2012, 08:33 AM
Re: Ideas

I am going to a different doctor on Friday for my annual checkup and I am going to bring up my issues. I will see what she says. Also, my previous doctor told me that some of the size could be due to the ultrasound being done during my cycle, so I will also mention that. I have made a list of the symptoms ect... and will talk to her then. I plan on asking her if the Mirena actually helps?? If anyone has tried the Mirena for this, would you let me know your experiences? Thanks for all the advice.
Unread 08-30-2012, 09:37 AM
Going for a second opinion-Adenomyosis (updated)

Hi everyone, I have posted on this topic a few days ago, but I go tomorrow for my annual and I am using a new doctor because I want another opinion. Last year I went for my annual and told the doctor about pain and she had an ultrasound done at the local hospital. The report said uterus was enlarged and was 11cm. When the doctor called she said my ultrasound was fine except it showed an enlarged uterus. I asked her what that meant and she said it was probably adenomyosis and I wasn't in enough pain to really do anything about it yet. When my pain got worse we could try the Mirena IUD since I already have a copper IUD and we know I do well with them. Well I am in more pain now, but not too bad. The pain is more frequent is a better way to put it. I have lower back pain a good bit and pain, stabbing or pinching like in my sides and it seems like my stomach is always tender. So when I go to this new doctor, I am taking the ultrasound results and asking her about it. But, I don't know what to ask about it. I know they can't know it's adenomyosis unless they do a hyster, but should more tests have been done to rule out anything else or is this a common problem and they can tell what they need to on the ultrasound? Also, the ultrasound was not a vaginal ultrasound and I am very overweight, would that affect it and maybe make it look bigger than it is? Could it have been enlarged to the 11cm because it was during my cycle or because I have the copper IUD or because I had a c-section? What questions do I need to ask the doctor about it? Sorry this is so long, but I don't know what to think and any advice would be appreciated.
Unread 08-30-2012, 10:08 AM
Re: Going for a second opinion tomorrow-Adenomyosis

I don't have any answers to your questions, but I had my hyster due to adenomyosis this past April. From experience I can tell you the pain got worse and worse as the years passed. I stalled on a hyster as long as I could. Now that I know it was adenomyosis causing all my troubles I wish I had done the operation a few years ago. There is no cure for adenomyosis. It gets worse and worse as time goes by. My doc said sometimes when menopause hits symptoms subside, but I was 47, she tested my hormones, which showed no menopause yet. I couldn't take the pain and poor quality of life anymore. See what you new doc says. Maybe if he suggests trying the marina IUD you could always try it and see how it goes. Post hysterectomy all my adenomyosis pains and bleeding issues were gone. I'm so glad I had my hyster!!My doctor did an laparoscopic surgery 8 weeks prior to my hyster with a hysterscopy and D&C. She wanted to get a better look and try to maybe avoid hyster if she saw things she could treat while in there. It made me more comfortable in my hyster decision knowing she looked inside and still recommended hysterectomy. Good luck at your new doc appointment!
Unread 08-30-2012, 12:33 PM
Re: Going for a second opinion tomorrow-Adenomyosis

Thanks for your reply. I guess I just want to make sure that adeno is the most likely problem and not something else. I don't know if my pain has gotten to the point that I am ready for a hyster yet as it hasn't affected my day to day life too much yet. However, even though the pains aren't that bad, they seem to be coming more often. And then, with this cycle which ends today, I haven't had any clots, but I have had minor cramping pretty much the entire time. But with the absence of the clots, it makes me hesitant to even bring it up at the office tomorrow. I know this is going to sound stupid, but over the years, I have had several ultrasounds for pains in my sides that always ended with your ultrasound is fine-it must have been a cyst that ruptured. I am to the point and have been for awhile now that maybe it is either in my head or just normal for me. Like I said, my pain isn't bad, the worst they get is occasionally I will stand up too fast and get a pain in my side that stops me in my tracks for a minute or two. Otherwise they are mild either stabbing pain, period pain or back pain. Advil or Tylenol would probably take care of it, but I absolutely hate taking meds so unless they are really bad, I just deal with it (I only took one pain pill after I had my c-section and didn't want to take it-I am scared of pain pills-too many people get hooked and I figure if I don't take them, I can't get hooked ) Anyway will see what the doctor says tomorrow. Thanks again for taking the time to listen to me "vent".

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