Adenomyosis and hysterectomy

Thank you all so much for the information and support. One other thing I was wondering.... did any of you ever get so much pressure that it feels like you need to urinate all of the time and is just so uncomfortable?

That is another monthly symptom that the last two weeks of my cycle are unbearable with the discomfort I feel.

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Originally Posted by desperate01 Thank you all so much for the information and support. One other thing I was wondering.... did any of you ever get so much pressure that it feels like you need to urinate all of the time and is just so uncomfortable? That is another monthly symptom that the last two weeks of my cycle are unbearable with the discomfort I feel.

YES! I had adenomyosis and pre op my bladder issues were so severe I asked the doctor if she was going to do bladder repair on me during my hysterectomy.She told me she was pretty sure the size and weight of my uterus was pushing on my bladder and causing all my problems and they would go away post op. She was absolutely right. I have not dribbled one bit since surgery, not even when I sneeze. Pre op I was wearing panty liners 24/7 as I always had a constant dribble of urine and a gush when I sneezed, or coughed. I also went to the restroom constantly pre op.

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Originally Posted by Ibis 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.

They just told me I have a prolapse as well. It was also a second opinion DR. that told me that. I am so eager for my appointment that I would love it to be tomorrow This is so miserable. I feel the same way. Saddened that I am thinking about it, but desperate to be better.

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Originally Posted by cathb911 YES! I had adenomyosis and pre op my bladder issues were so severe I asked the doctor if she was going to do bladder repair on me during my hysterectomy.She told me she was pretty sure the size and weight of my uterus was pushing on my bladder and causing all my problems and they would go away post op. She was absolutely right. I have not dribbled one bit since surgery, not even when I sneeze. Pre op I was wearing panty liners 24/7 as I always had a constant dribble of urine and a gush when I sneezed, or coughed. I also went to the restroom constantly pre op.

That is exactly how I feel. I feel like I have to go all of the time and the pressure is horrible. I am so glad to hear that the surgery helped you. I just can't wait to see my new DR. I am scared that I am excited thinking maybe she will do the hysterectomy and scared to death that it is relieving to think it may almost be over. The PA sent me to her for an evaluation and to talk about Da Vinci. I am hoping I can get it scheduled very very soon. I too wear a liner all of the time. One because I never know when I will break out bleeding and two I leak as well, worse towards the end of the month.

I had my DvH a week ago today for adenomyosis and I already feel better than I did before surgery. I've had no bleeding at all. I haven't even taken ibuprofen since the 4th day. I'm having to be careful and follow doctors orders so that I heel well, but I feel fantastic. My aches and pains are gone. The bleeding is gone. And my bladder and bowels work better now than they have in years. I didn't realize how bad I felt until I had my uterus removed. I'm doing great so far.

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Originally Posted by cathb911 I remember your frustration oh so well. No diagnosis until pathology. When after my hyster my doctor confirmed the adenomyosis I was so relieved. I kept thinking during the weeks prior to surgery that if it wasn't Adenomyosis maybe I was getting a hysterectomy for nothing. My pain and bleeding worsened gradually for 10 years, then drastically the last 3 years. research Adenomyosis more. after a lot of research you'll pretty much know if that's what you have. Everybody is different, remember, but their is strength in numbers. What tests/diagnosis has your doctor made?

That sounds exactly like me. Short history: heavy bleeding, and occassional severe anemia for 14 years. All previous doctors treated with BCP- I didn't get any better. It was a temporary fix, never a long term solution. Did an NovaSure Ablation 2 years ago. It was successful until 5 months ago, when I went from no periods to constantly cramping and heavy bleeding that wouldn't quit, ever. I was kept on antibleeding meds 2-3 times daily. Scheduled and had my TVH on 4-25-12. The pathogology came back with adenomyosis. The symptoms had been here for years, yet the size change was really fast! Literally, my uterus tripled in size from the vaginal sonogram in mid Feb to my surgery last week. Dr said it was the biggest uterus she had ever removed.

For me, the hysterectomy wasn't for "nothing"- it was to end the cycle of hemorrhaging and anemia that was wrecking my health and keeping me from exercise. Even if the pathology hadn't said adenomyosis, I have no fear of ever bleeding like that again, nor will I need strong pain meds for cramping. I was due for this hysterectomy long ago. If your uterus is wrecking your life, get rid of it and get on with your life, that's my opinion on the subject.

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Originally Posted by SGardner That sounds exactly like me. Short history: heavy bleeding, and occassional severe anemia for 14 years. All previous doctors treated with BCP- I didn't get any better. It was a temporary fix, never a long term solution. Did an NovaSure Ablation 2 years ago. It was successful until 5 months ago, when I went from no periods to constantly cramping and heavy bleeding that wouldn't quit, ever. I was kept on antibleeding meds 2-3 times daily. Scheduled and had my TVH on 4-25-12. The pathogology came back with adenomyosis. The symptoms had been here for years, yet the size change was really fast! Literally, my uterus tripled in size from the vaginal sonogram in mid Feb to my surgery last week. Dr said it was the biggest uterus she had ever removed. For me, the hysterectomy wasn't for "nothing"- it was to end the cycle of hemorrhaging and anemia that was wrecking my health and keeping me from exercise. Even if the pathology hadn't said adenomyosis, I have no fear of ever bleeding like that again, nor will I need strong pain meds for cramping. I was due for this hysterectomy long ago. If your uterus is wrecking your life, get rid of it and get on with your life, that's my opinion on the subject.

It clearly is controlling me... fear of going out of the house without protections, painful sex, any little twinge sends me running to the bathroom with fear. Two weeks...... hopefully they schedule me that day! Thank you all for the support!!!

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Originally Posted by Abagayle I had my DvH a week ago today for adenomyosis and I already feel better than I did before surgery. I've had no bleeding at all. I haven't even taken ibuprofen since the 4th day. I'm having to be careful and follow doctors orders so that I heel well, but I feel fantastic. My aches and pains are gone. The bleeding is gone. And my bladder and bowels work better now than they have in years. I didn't realize how bad I felt until I had my uterus removed. I'm doing great so far.

Oh to have the constant aches and pains gone.... this bladder pressure, argh!!! Cramping,,, you know it. I am so glad to hear how much better people feel after. I have to say, I think you are right and we get use to living with constant discomfort that to feel normal again.... oh that would be great!

Hi, new here, I just made my first post in the new member section.
I as well was diagnoised with Adenomyosis this past fall. I have had a lot of problems with ovarian cysts mainly on my right one. Alot of extremely painful and heavy periods. It wasnt until this past fall that I went into the dr with such bad bleeding and they did an ultrasound and said that I have adenomyosis.
The bleeding was so bad they did emergency medications to stop it. I wasnt even suppose to have my period for 2 more weeks.
Anyways, they said it was time to have the uterus removed.
So here I am too, I have surgery in 16 days!
Im having the robot as well, along with the right ovary and tube being removed.
She hopes anyway she wont have to do an abdominal big cut.
I hope it all goes well

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Originally Posted by desperate01 I know I want it to end it is just hard when they cannot say for sure what it is until pathology after the surgery.... I know in my heart what it is but when you have a dry day you second guess yourself... then AF hits again and you wonder why you again waited.... is this all normal

I feel exactly the same way! I often worry that the pathology will be completely normal and the doctors and my family will think I was just a baby and exaggerating. During the days I feel good I think the surgery can wait and I can handle it but then days like today when I'm in so much pain I want the surgery now! I was glad to see you write what I have been thinking!