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A hysterectomy for suspected adenomyosis? A hysterectomy for suspected adenomyosis?

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Unread 01-11-2010, 04:01 PM
A hysterectomy for suspected adenomyosis?

I'm 47 years old. Three healthy children, all delivered c-sections. 2003, tubal ligation during 3rd c-section. Endometrial ablation 2008 due to extremely heavy periods and off the scale pain. Ablation worked for almost a year, a gift. Then pain issues set in, again, worst pain ever went to ER thinking I had a kidney stone. I have chronic lower back pain that increases with each period, although no bleeding, but did have some bleeding issues recently. Percoset is the only thing that helps with pain. This lasts for one or at most two days.

10/2009, GYN suspects adenomyosis (not sure why she doesn't suspect endometriosis--maybe it wasn't seen on ultrasound?) and is recommending a DaVinci laparoscopic hysterectomy (keeping ovaries, so far). She put me on Provera for two cycles to see if pain would subside and it did. She said this would confirm the possibility of adenomyosis but don't know for sure until the uterus is out and sent out for pathology. I'm tempted to just continue with Provera and call it fixed--but the hormones are still crazy with the Provera--wish there could be more balance with hormones. Why hasn't someone figured out what to do for each day of your cycle?

I find this all hard to believe and take in--my thinking is should I be having this drastic measure surgery with only a suspected diagnosis and a few days a month of unbearable pain? What will life be like without my uterus? What will sex and orgasms be like without my uterus? My moods are all over the place as it is and I have no idea what normal is anymore. My husband is wonderful and I have great support but I have so many reservations because you just never know what's going to happen once the uterus is out--will I need my ovaries out at some other point in time?

I feel fortunate that I have not had to deal with heavy bleeding as of late, but I do deal with lower back pain on a daily basis and often wonder if perhaps the supposed adenomyosis is causing this discomfort--if this alone would go away after hsyterectomy, I would be grateful. I'm extremely anxious about going ahead with this hysterectomy, not knowing the outcome, not diagnosed before having the hysterectomy, it's all so unsure. I like definitive answers. My biggest concern of all, what will life be like after the hysterectomy? I've spoken to older women that have had their's and said life is much better and should have done it sooner. That's amazing to me. If you can relate to my anxiety and have some advice now that you are post-hysterectomy, please let me know.
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Unread 01-11-2010, 06:30 PM
Re: adenomyosis and bloating

Hi there,
I had endometriosis for years, but more recently suspected adeno & fibroids. After my hyst, fibriods were confirmed & no adeno. I had terrible bowel problems (mostly bloating & diaohrea - sp??) but that has all resolved itself now. I'm not an expert, but I bet a gastroenterologist would've diagnosed me with IBS had I presented myself. One gynae theory was that my uterus (16 week preg size) was pressing on my bowel. The success of the procedure has proven this to be correct. One thing that helped with the bloating was to avoid cheese.
I hope this helps.
All the vey best to everyone.
PS. I thought I was going mad, also, & was treated like a hypochondriac. Oh, and breathlessness was a problem also - it kind of hurt to breathe, & felt constricted.
Unread 01-11-2010, 09:09 PM
Re: A hysterectomy for suspected adenomyosis?

I think you are wise to be asking questions before jumping into a major surgery, especially for a suspected condition! Before you make your final decision, I would really suggest seeking at least a second opinion about whether or not a hysterectomy is necessary for you. It is possible there is a hormonal regime that would work for you in lieu of surgery.

Why hasn't someone figured out what to do for each day of your cycle?
One reason for this is that our bodies are very complex but they can adjust as we need them to. For instance, in times of stress or heavy exercising, our body can adjust the hormones we need. So even if you had a good idea of the exact doses of the various hormones you would need on a day to day basis, those amounts would change depending on your current life situations.

I wish you well as you research your options, seek at least a second opinion, and determine what is best for you!

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Unread 01-12-2010, 04:40 AM
Re: A hysterectomy for suspected adenomyosis?


I had heavy bleeding, blood clots, and sever cramping. I wa schedule for a LSH (Laprascopic supracervical hysterectomy) on Jan. 7, 2009 and was so full of anxiety I backed out. Unfortunately, that was the worst mistake I made. My condition worsen. I would feel that I was in labor my time of the month. I had two options an ablation or a LSH. I had opted for the ablation until one day the pain was so severe that I could not leave the bathroom for 20 minutes. I was at work and had to go to the health unit. I immediately call my doctor after taking motrin and the pain subsided. He then told me that an ablation will take care of the heavy bleeding but not the cramping. So, I talked with my husband and I scheduled my LSH for October the 27th. It wasn't until after my lab results came back for my uterus is when he knew that I had adeno that is where the pain was coming from. He said that Dr.'s really can't tell if you have adeno until after the uterus is removed. It is usually inside the uterine wall of the muscle. A lot of dr.'s assume that it is endo until after the surgery is performed. I had both, I had endo wrapped around my right tube so he removed the tube as well. It is best that you get all the information you can this is a major surgery. As of today, 2 1/2 months later I am period free and pain free. Best decision I have ever made.

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