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Are my symptoms due to adenomyosis?
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10-27-2008, 02:01 PM
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Guest
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Posts: 3
Hysterectomy:
Surgery Type: TLH
Ovaries: Kept 1 or both
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Are my symptoms due to adenomyosis?
I am new here and trying to descide if all of my symptoms are due to adenomyosis or not. I have terrible lower back pain and leg pain. I was having periods from 15-45 days but the progesterone has that under control, i think. My pain and pressure in my pelvis is getting worse Help!!!!
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10-28-2008, 07:07 PM
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HysterSister
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Posts: 3,467
Hysterectomy: August 25th, 2004
Surgery Type: LAVH
Ovaries: Removed both
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Are my symptoms due to adenomyosis?
smoaky
Here's a link that might help you see if your symptoms fit: Basics of Adenomyosis Some docs will suspect adeno based on symptoms and possibly a "boggy" feel (heavy sponge-like feeling) of the uterus. There are multiple GYN conditions that produce similar symptoms, so it's difficult to know without a complete work-up with a pelvic exam, ultrasound and possibly MRI to check for or rule-out other possibilities whether what you are experiencing sounds like adenomyosis or not.
Some diagnostic study results can be suggestive of adeno, but it takes a surgical pathology, usually from a hysterectomy, to confirm the diagnosis. Mine was diagnosed at the time of my myomectomy. I did have low back pain, painful periods with lots of pressure and bloating, and pain down the tops of my thighs, but I had several gyn problems contributing to my symptoms so cannot pinpoint which was from what.
I hope you find the answers you are looking for and the relief you deserve.
Take care.
Beth
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10-29-2008, 09:10 PM
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HysterSister
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Posts: 83
Hysterectomy:
Ovaries: Undecided
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Are my symptoms due to adenomyosis?
I iwll agree with smoaky. I have had symptoms such as you describe, plus others. I have not taken any form of hormone since 1997 when I quit the Pill and had a tubal ligation. Eventually my periods got VERY heavy with lots of clotty material. I had a Novasure ablation in May of 2005 which seemed to slow down the flow but I had greatly increased cramps. THEN I started bleeding CONSTANTLY about a year ago...I would have a period with EXCRUTIATING cramps for a few days, then it would stop, then I would spot for a week, then it would stop, then it would bleed more heavily for a few days. It got to where I carried all sizes of pads and tampons with me, and I had a number of embarrassing moments anyways.
About a year and a half ago I was diagnosed with a large uterine fibroid, but a year later, with symptoms worse, I had an MRI and they were pretty sure it's adenomyosis. I did a once-a-month, 3-month course of Depo-Lupron which worked wonders until about 2 weeks ago. Now I will be doing another three months of Lupron and scheduling a hysterectomy. The "fibroid" turned out to be just an extremely enlarged uterus and massive amounts of adeno.
You don't say how old you are, but I'm almost 48 and I never had any children (SUPPOSEDLY a cause of adeno in later life). I'm going hysterectomy because life is too short to spend in the bathroom trying to stem the tide, or to lie in bed for several days writhing in pain.
Adenomyosis really can't be diagnosed for sure until a pathology report after a hysterectomy comes back. I am hoping my doctor lets me have a little piece of MINE to set fire to on the first teebox on opening day of golf league next spring!
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10-30-2008, 12:10 PM
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HysterSister
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Posts: 78
Hysterectomy: October 9th, 2008
Ovaries: Kept 1 or both
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Are my symptoms due to adenomyosis?
I have to agree with what the other ladies have said. I had symptoms like you described, I went through a variety of tests and exams. i also had the Novasure procedure that made my pain and cramps worse, it did eventually help with the bleeding but my pain was way worse after. I was taking 3 to 6 vicoin a day. After multiple visits to my gyno he finally decided to do my hysterectomy and it turned out that I did have Adenomyosis.
My advice is to have the docs check things out because as Sistabeth pointed out it could be many things.
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10-31-2008, 07:55 PM
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Guest
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Posts: 22
Hysterectomy: October 21st, 2008
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Are my symptoms due to adenomyosis?
I was having very heavy periods (HUGE clots), terrible cramping and pain that happened even when it wasn't my period. I had very bad back pain as well (but I have back problems so I attributed it all to that).
I saw Doctor #1 and he did an ultrasound, they didn't even mention Adenmysosis as a possible problem.
I saw Doctor #2 (Oncologist GYN) and she did a D&C, hysterscopy, plus biospsies of my cervix (abnormal pap). There was no cancer, so she "cleared me" back to regular GYN - still no mention that Adenmysosis was a strong possibility given my symptoms - although she was a cancer doctor, so I don't know how much I should expect her to know about regular GYN issues, she didn't know much about Ablations.
Finally, I went to doctor #3 (my old GYN fro 12 years ago that I loved). She immediately scheduled me for a LSH. I just had my 10 day post op and she told me that I had Adenomyosis. It finally all made sense to me but no one even mentioned it and it wasn't diagnosed until the actual hysterectomy and confirmed in pathology.
I feel AMAZING now, this LSH was the BEST decision I could have made. What I thought was ALL back pain was obviously exacerbated by the Adenomyosis. I still have back pain but it has been sooooo much less, it is amazing - never mind that I don't have cramping and won't have any more bleeding. The surgery and recovery have been very easy and I would do again in a heartbeat for the benefits it provides!
Good luck to you!
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11-01-2008, 10:26 AM
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HysterSister
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Posts: 166
Hysterectomy: March 5th, 2007
Surgery Type: TAH
Ovaries: Removed both
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Are my symptoms due to adenomyosis?
My horrible constant pain and heavy bleeding were caused by adenomyosis. I had to beg for a laparoscopy/hysteroscopy, but that is how my adeno was diagnosed. My doctor took three deep biopsies of my uterine lining. The pathology then showed adeno. My doctor wanted to treat with a Mirena IUD, but that sounded excrucaitingly painful to me as I was in bad shape already and disabled from gyno pain, etc. I begged for a hysterectomy and the pathology showed that I had severe/deep adeno plus many other gyno problems like endo on bowels and bladder, ovarian and tubal cysts, degenerating fibroids, adhesions, etc. My doctor was always sure that nothing was wrong with me and that my disabling, severe, chronic, cyclic pain and symptoms were all in my head. My point is that my adeno would not have been found except for my biopsy during the hysteroscopy. One reason is that I have not delivered a baby full term (3 miscarriages) and my doctor was stubbornly sure that only women who had given birth could get adeno. Plus, my uterus was only a little tender and enlarged. But I had severe deep adeno in the entire uterus, not just in one spot that could be cut out. My doctor was a nightmare. I was consented for a LAVH which was easy to do since my fibroid were tiny, but my doctor just did a TAH once I was sedated! I had 4 hours of violent vomiting after surgery which led to ruptured incision that bled for 6 weeks and large hematoma, etc.. My recovery lasted a year which was disaster for me and very painful. I still can't move, bounce or do normal activities without daily pelvic pain, and burning incision pain, probably caused my scar tissue and adhesions from the post-surgical complications. I don't think this would have been the outcome if my doctor hadn't breached my informed consent and hade done the planned LAVH and proactively prevented the post surgery vomiting. I feel like my life is ruined now and I had expected my hysterectomy to allow me to finally live a pain free life and without heavy bleeding that was horrible. Anyway, please make sure that if you plan to have modern, minimally invasive surgery, that your doctor doesn't lie and do the wrong surgery for her own convenience. I never would have found out what had happedned except that I gt my hospital records and had them reviewed.
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