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Adenomyosis and hysterectomy Adenomyosis and hysterectomy

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Unread 04-17-2012, 10:34 AM
Re: Adenomyosis and hysterectomy

My has gotten gradually worse too and the symptoms are even worse then the bleeding, although the bleeding is bad, don't get me wrong. I don't dare leave home. Once in a blue moon I have a wow, that month was not too..... bad. Then I pay the next month. Did you ever get that?

I have had two water infusion ultrasounds and biopsies. I have tried BC pills. I have had ultra sounds and blood work. They checked hormone levels and my thyroid. Everything comes back normal which just blows my mind and adds to my confusion.
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Unread 04-17-2012, 10:49 AM
Re: Adenomyosis and hysterectomy

My doctor suspects Adeno, but I already had it on my radar from my online research. I googled my sysmptoms and found adeno. I have had symptoms for 20 years!!! They do continue to get worse. Now they are unbearable. I would advise to get the surgery because it will get worse. 34 days and counting!!!
Unread 04-17-2012, 02:58 PM
Re: Adenomyosis and hysterectomy

I would be a text book case for DvH...
I had it and by day 3 felt good. The worse thing was trying to keep myself from over doing it and the tiredness.
Not everyone feel as good as I did but there are those out there that had a easy time of it.
Now for the Aden... The worse thing I every had. I was very sick and the cramps were horrid. I would have to leave parties and not able to shop well.
It took me 6 months to see the surgeon (after being referred) and every month the pain got worse. There were days that all I could do was lay on the couch and moan thru a movie...
I guess since I was so sick before hand that the surgery and recovery seemed like nothing to me. I mean yeah I had some pain every now and then but nothing compared to the pain of Aden.
I wish you the best. Even if it takes you a while to heal, once healed the pain of aden will be gone... and you will feel better..
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Unread 04-17-2012, 04:29 PM
Re: Adenomyosis and hysterectomy

I never had the moodiness your talking about with my adenomyosis. I was crabby and cried a lot just because I was frustrated with being sick for so long. If your doc checked your hormones and thyroid, you may just be moody because you feel like crap all the time.
I too had rare months that weren't so bad , that's when I would start thinking I was just a baby and nothing was wrong with me. Then...SLAM I'd bleed and cramp 10 days straight, have a three day break and start bleeding and cramping again. Towards the end I was in constant pain/cramping every day of the month.
Ultrasound doesn't show adenomyosis. Neither do MRI's. My doc did an ultrasound and trans vaginal ultrasound late December. She was concerned with her findings, but still no diagnosis of Adenomyosis. She sw fibroids and endometriosis though. She did surgery on me 8 weeks before my hysterectomy to see what was wrong and clean up the endo and fibroids.. ( Laparoscopy, hysteroscopy, D&C). Once she had me opened up she knew I had adenomyosis and hysterectomy was the only " cure". She cleaned up my endo, removed a few cysts, examined my ovaries and closed me back up. We immediately scheduled the hysterectomy. I luckily got to keep my ovaries, but everything else came out. I had my 2 week post DaVinci follow up appointment today.All is well, she told me recovery takes time and not to be execting to do much but walk for a few more weeks. When I got home I started bleeding ( a sign of over doing it) I haven't bled since day 2 post op. I'm now thinking...If a simple 20 minute car trip and just walking into and out of her office was overdoing it, ykes? She didn't do a pelvic, so there is nothing she did to cause the bleeding. I called her and she said the bleeding is a sign from my body that I over did things today, so stay down. Just trying to give you an idea of post op DaVinci recovery. Hope for the best, but definitely prepare your house and family for a long slow recovery. Better to be prepared and not need to be than it is to think it will be a breeze and not be prepared when you need more down time later.
Unread 04-17-2012, 09:35 PM
Re: Adenomyosis and hysterectomy

I've had adenomyosis since I started puberty. I thought crippling pain and long periods were normal. It wasn't until I had pelvic organ prolapse and went to a second doctor about it that she found out that I had adenomyosis as well. I'd be sad to lose my uterus if it wasn't for the excruciating pain. I have a feeling my anemia will clear up afterwards, too.
Unread 04-18-2012, 02:59 AM
Re: Adenomyosis and hysterectomy

Desperate01- Moody? Soooo moody! My hubby and kids would find an excuse to get out of the house on those days. I really just thought it was part of typical PMS and I would put up with it. Was on the couch any way so I'd just wallow in my own sorrow. I really can't wait to have to visit my GP again just to rub his nose in it. xx
Unread 04-19-2012, 05:13 PM
Re: Adenomyosis and hysterectomy

My pain brought me to the emergency room. Originally I was diagnosed with a large kidney stone, but it turned out to be a calcification that fooled all the doctors. The urologist had me go to the gyno, who told me the pain was from adenomyosis. He is a wonderful doctor who does the daVinci robot and was very concerned about my pain level. He is going to get me scheduled ASAP, hopefully in the next few weeks. I have lots of family support, which I appreciate.

Any tips on preparing would be appreciated! I don't know anyone who has had the daVinci surgery.
Unread 04-20-2012, 01:43 AM
Re: Adenomyosis and hysterectomy

Yes, definitely can relate to the symptoms. I have spotting with exercise, sex, ovulation and 9-10 day heavy periods & clotting as of late. Also pain with all of those things.

My gyn about 8 years ago suspected Adenomyosis, but I we wanted another child - we had our 2nd child 5.5 years ago. For about 2.5 years after that I had absolutely no issues, which was the first time since I had began menstruating.

I saw another gyn about a year ago and he thought my bladder and uterus had fused from scar tissue after my c-section and that my uterus was enlarged to about the size of a 12 week+ pregnancy.

I saw another gyn about 2 months ago and after the initial exam he expected Fibroids, but the ultrasound last month revealed none. He doesn't think anything has fused, although he does expect scarring and likely Endo lesions.

He suspects Adenomyosis since my uterus is now the size of a 16+ week pregnancy with no fibroids. He recommended a Hyst right away. It took me until this week to finally decide to move forward and I am scheduled for 5/30.

Sorry you have had to wait so long for help. I hope your appointment will offer you some definitely are not alone on this journey!
Unread 04-20-2012, 04:35 PM
Re: Adenomyosis and hysterectomy

I had a total hyst via da Vinci 8 days ago and my dr. suspected aden. after she removed the uterus. My cycles are very much like those being described, painful, large clots, heavy bleeding. I had several documented episodes of seeing my NP because I was soaking a super tampon and heavy pad in less then 15 mins. so that helped steer me towards an ablation and a Dr. that could perform one. However my biopsy came back positive for polyps and I was 15 years away from menopause so my Dr. suggest a total hyst. Thankfully I kept my ovaries and what was left of my tubes. My pathology came back negative (yea!) and I've had a seamless recovery. Yesterday would have been the start of my cycle this month and other than being tired, really, really tired....there was nothing else! The road you are traveling is well used and you'll find plenty of support here (as I have). Best of luck to you.
Unread 04-20-2012, 04:44 PM
Re: Adenomyosis and hysterectomy

Sorry I forgot to mention my preparation tips - clean your house before you go. You'll be resting alot and if you feel good you'll want to take on projects like cleaning, so get it out of the way before you go so you're not tempted. Have comfort food at home. My hubby bought me chicken soup which I lived on for the first 4 days. Have a heating pad and/or ice pad on hand because one or both will make you feel better when things ache. Buy some drinking straws so you don't have to sit up at home to drink! A recliner or the couch with a foot stool is a great place to plant yourself while you recover. Do NOT watch comedies for the first couple of days - laughing hurts! Walking helps get your plumbing moving again after surgery. Loose pants help in the beginning. If I think of anything else that helped I'll come back!

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