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New here--adenomyosis New here--adenomyosis

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Unread 05-20-2005, 01:36 PM
New here--adenomyosis

I am new here also and have been finding out some interesting information for myself. I am so thankful and fortunate that my situation is not as severe as some and I feel so much pain for those who are suffering so much I am so sorry for you. Just Pray and I will too.

My doc did one well woman pelvic exam, said my uterus felt enlarged, I had vaginal ultrasound and she just like says I have adenomyosis. She explained it to me and then proceeded to tell me that my uterus was supposed to be 7cm but measured 12cm, and I was not really having any problems, or any that I would have considered serious or complainable until my period came on and I hurt so bad and my husband even noticed that I was in pain when I usually am not. And my bleeding was very very heavy. Well I go back to see my doc on the 10th of June and the pain has been more noticable since she told me all of this so I kept thinking that it was all in my head. But I have some urinary incontinence that probably can now be explained because of the size of my uterus is probably putting pressure on my bladder which is driving me crazy.

Any way I have enjoyed becoming familiar with this diagnosis and some of you guys out there and I will keep you posted on my decisions. I am 40 have 4 children and do not plan on any more so it sounds like that instead of abdominal hysterectomy I could see if my doc agrees with the LAVH, because my ovaries she says are still healthy.

More to come.
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Unread 05-21-2005, 10:12 PM
New here--adenomyosis

Hi Cjhopper14

I can imagine your surprise when you were told your uterus was enlarged at your well-woman exam. Since you’ve been educating yourself on adenomyosis you’ve probably already read how it is difficult to diagnose by testing and the diagnosis can only be confirmed by pathology report from surgery. Some women, like you, do have test results that are suggestive of adenomyosis. What to do about it usually depends on the amount of disruption this causes in your quality of life.

Given that your periods were normal up until recently, I hope your physician wasn’t pressuring you into surgery right away. Although hysterectomy is the only way to “cure” adenomyosis there may be other alternatives available to lessen your discomfort and perhaps enable you to avoid or postpone a major surgery until you are sure it is necessary for you. My doc had me taking 800mg Ibuprofen 3 x day with my periods and it did offer good pain relief for quite a while. It didn’t help with the heavy bleeding though. I also took a low dose diuretic that helped with my swelling and made me more comfortable. Maybe your doctor has some medical suggestions for you too. Also, be sure to keep up with your Kegel exercises to help with your stress incontinence.

Although most women do well with their hysterectomies it is not without risks and complications, and some women have definite regrets about their choice. Please get a second or even third opinion before you make up your mind. You are worth it.

Let us know what you decide. I’ll be thinking of you.
Best wishes & s,

Unread 05-22-2005, 12:34 AM
New here--adenomyosis

Welcome, sweetheart. Adenomyosis is a pain in the... well, in the belly, but I really hope that you aren't feeling pressured into surgery because your doctor found it. Many women are asymptomatic, or experience only minor discomfort from it. I agree with Beth, since you haven't had a problem with it until just recently, you may respond to other kinds of treatment and be able to avoid a hyst (unless you want one). Hey, if women in your family tend to go through menopause fairly early, you may find that by the time you get to seriously considering surgery, you could stop needing it. At least that is what I hope, for your sake, surgery is no fun. In any case, I will be sending good wishes and thoughts your way, because I know how much adeno bites. Be well and stay strong, my dear.

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Unread 05-24-2005, 02:36 PM
New here--adenomyosis

I had a preop diagnosis of possible adenomyosis before my hysterectomy and my uterus was enlarged to the size of a nine week pregnancy. They use that for sizing. I was told once it reached ten weeks or bigger a vaginal hysterectomy was out of the question. I also had to see a urologist because I wasn't able to void without changing positions and I ended up having urethral stenosis (tight urethra that needed to be dilated in the office). Since you also have bladder issues you may want to see a urologist until you can get in with you gyn again. Your gyn may be able to recommend a good one and sometimes they work together that way if any bladder work or repair is required dr's often schedule the surgery at the same time of the hysterectomy. I've often heard that it can take up to two months to get in with a good urologist but I was lucky to get in with one that just jolned an office that was recommended to me and I was supposed to see one urologist but they told me that there was a brand new dr. there. They assured me he was very good so I took my chances with him and I don't regret it at all. I've been seeing him since my hysterectomy and he is the greatest. He's helped me out in more ways and has always been there for me. I simply had a big uterus sitting on my bladder that could have caused the stenosis but now that my uterus is out I have been dilated again four more times with lidocaine jelly so it doesn't hurt with the most recent one being a week or two ago. Hang in there and find out all your options and don't wait to long. I'll try to come back later with some other posts about adenomyosis. I was very lucky. By the way, even though my ultrasound showed I had possible adenomyosis the pathology report came back showing something different so I'm so glad that I didn't chose Uterine artery embolization because it wouldn't have helped me. Good luck to you and please get another opinion and I think it would be a good idea for you to see a urologist. s
Unread 05-26-2005, 05:24 PM
New here--adenomyosis

Here is one post that I posted a long time ago in reference to adenomyosis survey and options below at the end of this response.

Now I remember a lady here that did have a diagnosis of adenomyosis and then she decided to wait for about a year and then came back and was forced to have an abdominal hysterectomy due to the size of her uterus and then regretted waiting because if she had just done what the dr. told her to do in the beginning she may have had the chance to have a vaginal hysterectomy. I don't know if she still regrets waiting because of having an abdominal hysterectomy. I'm not saying you should go for the hysterectomy but if you are already suffering and having bladder issues you may want to get another opinion. Also keep in mind that adenomyosis can only truly be diagnosed by a pathology report after a hysterectomy so nothing is definite even before a hysterectomy. My dr. was almost positive I had it but he said it was possible I had it but added that it couldn't be truly diagnosed unless I had a hysterectomy and I had to consider my options. Since I was 29 and I had suffered heavy bleeding and my family was complete I decided enough was enough and wanted to go for the hysterectomy.

When I was offered UAE- uterine artery embolization I thought well first it may not be covered by insurance and it costs just as much as a hysterectomy so if it didn't work I still may end up having a hysterectomy anyway, 2. I would still have periods, 3. I would still have to use some form of birth control to prevent pregnancy as my options were only barrier methods and that was pretty much a pain to my husband as my diaphragm hurt him. 4. If pain were a main concern UAE wasn't as successful with these type of patients, 5. I would need to have an MRI about three months and then six months and then a year after the procedure to see if it worked and I really didn't want to sit around and wait to see if it worked. 6. I wanted it fixed right away and didn't want to have to wait a full year to see if the UAE worked. With UAE I understood that I had to have an MRI at three, six, eight months, and then at one year to see if it worked.

I was and am a stay at home mom so taking time off for recovery after a hysterectomy wasn't the biggest issue and I was able to recover with my family. My husband did all the cooking and I stayed in bed but did walk around so I wouldn't develop blood clots. A hysterectomy is major surgery so you may want to take a look at the main page and look at all the pre and post op list of things as it may be helpful.

Keep in mind that both an abdominal and vaginal hysterectomy have the same recovery time just without the outside cut. All the internal work is the same and some women with vaginal hysterectomies can have over 100 internal stitches. Hope this link helps you out some. Now as far as the size of your uterus if it's to big the dr. may not be able to get it out vaginally. I was told if it was to big to get out vaginally it would be to big to get out with a lap procedure as well plus I couldn't have the anesthesia of my choice that I wanted with the TVH or TAH a spinal and epidural. With a lap procedure general is the only choice as far as I know due to the gas that they use to inflate the belly but I have heard of women getting an epidural put in at the same time during general so they don't wake up in severe pain after surgery. I've also included other links as well for you. With me I bled anywhere from ten days to two weeks and when I was finally able to have sex I was at risk for getting pregnant and then the week after that I had PMS so I really only had one good week out of every month that I wasn't PMSing it or bleeding. Sorry to be gross. If you'd like to read my personal story you can click on this link. s

Adenomyosis survey and options

Epidural vs. General anesthetic scroll down to my nick name and I have included many other links for others to click on for additional information. Hope this all helps you.

But your sooo young!!!!
I like HorseWoman's response "Gee, you're right... I never thought of that! I should go on having pain, heavy bleeding, and all these other problems that stop me from enjoying my young life and endanger my health, and then when I'm old and tired, if I live that long, *then* I should have it taken care of. Silly me - I didn't consider that option!"

Should I even be considering surgery?

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