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Anyone with adenomyosis, please help!
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10-01-2008, 06:24 AM
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Guest
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Posts: 12
Hysterectomy: October 27th, 2008
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Anyone with adenomyosis, please help!
I really need advice from anyone diagonised with adenomyosis. My doctor has also said he "thinks" I have adenomyosis. But I am so confused and hope someone can help me. I had an unsuccessful novasure ablation in Nov. 07. I had irregular bleeding afterwards and during the months of July and August I bled almost every day. That's when I scheduled my hysterectomy. The doctor said it would only get worse. But it hasn't! During Sept. I bled maybe 7 days, and have had no bleeding for nearly 3 weeks. I am scheduled for surgery on Oct 27th. I have NEVER had bad pain, before or after the novasure. I'm not even sure I have adenomyosis.
Has anyone ever experience this? I talked with my doctors nurse and she said it was typical to not bleed and then start up again, but my doctor told me it would only get worse, not better.
I am agonizing whether or not I should cancel my surgery?!
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10-01-2008, 06:47 AM
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HysterSister
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Posts: 2,201
Hysterectomy: March 26th, 2008
Surgery Type: TLH
Ovaries: Kept 1 or both
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Anyone with adenomyosis, please help!
Hi chocolatepiano. The reason your Dr can't be sure you have adenomyosis is that this disease is very hard to diagnose until they undertake surgery. I went for years with this condition and did not have severe abdominal pain for many of those years but the main symptom was erratic bleeding that did get worse and worse over a long period but it was gradual deterioration. I had lots of odd pain in places that I did not know were connected to the disease (eg I used to get leg and back pain) which I used to put down to other things. I had got used to putting up with generally feeling unwell, constantly tired etc. When I was finally diagnosed the disease was really advanced to the point that it did show up on an scan (and it usually doesn't until it is getting very serious). I too was shocked by the diagnosis and found it difficult to accept that hysterectomy was the recommended solution. My specialist told me that he usually recommends hysterectomy long before it gets as advanced as mine was. My understanding is that there is no other effective cure for adenomysis other than hysterectomy. Nonetheless, you need to weigh up all the advice from your doctor and if you are not convinced you could always seek a second opinion. On the plus side, I cannot believe how much more energy and how well I am since the surgery. My surgery and recovery were complicated because my condition was so advanced, so the only thing I regret is not seeking help earlier. All the best, whichever way you go.
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10-01-2008, 06:55 AM
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Guest
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Posts: 12
Hysterectomy: October 27th, 2008
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Anyone with adenomyosis, please help!
Thanks for responding so quickly! Did you have times when you did not have bleeding for weeks? If so was it early on? I think you may be an answer to my prayers. {{hugs}}
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10-01-2008, 06:56 AM
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HysterSister
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Posts: 36
Hysterectomy: November 19th, 2008
Ovaries: Kept 1 or both
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Anyone with adenomyosis, please help!
I am having a hysterectomy November 19 for possible adenomyosis and have alot of the same feelings you do. I have been putting it off thinking I can live with the bleeding and the back/leg pain and it wasn't until the urogyno told me I needed some bladder repairs that I decided if I am going to undergo surgery anyway, now is the time to do the hysterectomy as well. It is hard to have something done that you are not 100% sure about. I have researched adonmyosis on this site for two months. I think I have read thousands of other peoples stories and have come to the conclusion that I am making the right decision and can't wait to feel better! Good Luck....
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10-01-2008, 07:08 AM
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HysterSister
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Posts: 2,201
Hysterectomy: March 26th, 2008
Surgery Type: TLH
Ovaries: Kept 1 or both
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Anyone with adenomyosis, please help!
Hi chocolatpiano. Yes I did have times over the years when I didn't bleed for weeks and then would bleed for much longer or even very very light periods that I wasn't even sure were true periods. Erratic bleeding, not just heavy bleeding is a symptom of adenomyosis.
Brejim. It might encourage you to know I have not had the lower back or leg pain from day 1 of the surgery. (I still can't believe how accurate my Dr was when he said I would find that lots of things would change for the better for me after the surgery. - I had no idea the leg pain especially had anything to do with adenomyosis.)
Best of luck ladies.
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10-01-2008, 07:09 AM
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HysterSister
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Posts: 18
Hysterectomy: August 20th, 2008
Surgery Type: TAH
Ovaries: Removed both
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Anyone with adenomyosis, please help!
I agree with all that's been said. I went in for a Hysterectomy due to large fibroids, an enlarge uterus, abnormal bleeding, etc..... (I've tried ablasion multiple times, birth control pills, then gave up and nothing worked). After the pathology report can back with Adenomyosis my doctor said well that explains more that I was able to detect.
I hadn't even told him about my leg pain, back pain, cramps because I have Lupus as well and so much pain with the disease is unexplainable.
The doctor that I finally let do my surgery was my 3rd opinion and the one that I will continue to see because he is a true care giver.
It will not hurt to see another doctor just for a second opinion...
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10-01-2008, 07:16 AM
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Guest
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Posts: 12
Hysterectomy: October 27th, 2008
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Anyone with adenomyosis, please help!
Thank you everyone. I do trust my doctor, I have been seeing him for the past 14 years. I have just been so unsure about everything, but your stories have really helped me know that I AM doing the right thing. {{hugs}} to all.
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10-01-2008, 08:15 AM
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Guest
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Posts: 17
Hysterectomy: December 19th, 2008
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Anyone with adenomyosis, please help!
My Dr. thinks this is what i have also. I am on BC so my periods aren't heavy the only thing i experience is painful intercourse and pelvic pain. She also said i have pelvic congestion. I am tryin to figure out if i should go through with the surgery or deal with the pain.
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10-01-2008, 09:54 AM
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HysterSister
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Posts: 66
Hysterectomy: October 22nd, 2008
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Anyone with adenomyosis, please help!
"I had lots of odd pain in places that I did not know were connected to the disease (eg I used to get leg and back pain) which I used to put down to other things. I had got used to putting up with generally feeling unwell, constantly tired etc. When I was finally diagnosed the disease was really advanced to the point that it did show up on an scan (and it usually doesn't until it is getting very serious). "
Ok, this feels so strange for me, you totally described a lot of things I didn't know were part of this! They found my adenomyosis on my pelvic exam. I've had a lot of pain and problems, now knowing to be caused by this, according to my doctor's theory. My doctor had no doubts on it being adenomyosis. She didn't use words such as advanced or extreme though.
I've also got this strange thing. If I bend wrong, my legs feel almost numb for a second and I get a shooting pain but can't explain where the pain travels.
My symptons are not constant either. Matter of fact, when I finally decided to go to the doctor a few weeks back, I started right before hand and didn't have the pain or being sent to bed for two days from pain and exhaustion even!!
I was also told it would only get worse without my hyst. They're taking my cervix as well because yearly exams bring me to tears if they touch it.
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10-01-2008, 10:09 AM
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HysterSister
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Posts: 45
Hysterectomy: October 28th, 2008
Ovaries: Undecided
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Anyone with adenomyosis, please help!
Hi chocolatepiano,
My doctor originally recommended a hysterectomy for me over a year ago because of fibroids. I have heavy bleeding with clots that is causing anemia. I don't have any erratic or irregular bleeding. My periods are very regular, just horrendously heavy. I do have bad cramps usually starting a day or two before my period, but I never spoke to him about that. I just assumed that was normal.
Since then, my PCP has sent me to the ER twice for transfusions because of the anemia. At that point, I decided to do something about my problem. So, I went to a teaching hopsital in Boston to be evaluated for uterine artery embolization to treat the fibroids. Part of the screening for that procedure is an MRI. That's when it was discovered I had adenomyosis in addition to fibroids. The area of adeno is actually larger than my largest fibroid. On the ultrasounds I have had, it was always read as a fibroid. Only with the MRI could they see it was different. Unfortunately, UAE is not very successful in treating adeno. I was told that within two years of the procedure I had a 50/50 chance of being back where I am now.
I've now scheduled a hysterectomy. But, like you, I've been agonizing whether or not I really need it. I'm not bleeding all the time and I'm only in pain during my period. I always thought I needed to be bedridden to really need surgery. The anemia is my major concern and the fact that my fibroids are continuing to grow. My doctor said if my fibroids get much larger, he may need to do a vertical incision as opposed to horizontal.
For me it is a quality of life issue. I'd rather have the surgery while I'm healthy enough to recover quickly. I'd also like to be able to finally resolve the anemia and be able to be more active without all the exhaustion. I guess you need to decide whether or not you can live with the symptoms you have.
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