Anyone with Adenomyosis

Hello ladies,

I have been reading some of the responses and realize that there are a lot of women out there that have been diagnosed with adenomyosis. I had a lap done 6/3 and everything checked out normal. Uterus appeared to be normal in size is what the report says. No endo was found, I had originally went into the ER doubled over in severe pain. All tests ran in the hospital were all negative as far as abdominally also. I was then sent to a gastro doctor and all tests there have checked out normal as well. Yet, I still have a tremendous amount of pain, it comes and goes but is getting worst as the days go on. My periods are not heavy, heavy like some of you women have but yet I will go sometimes up to 12 days "leaking/spotting" until it finally stops. The cramping is severe although I have now been put on bc pills but usually around day 4 is when the heaviest cramping comes. I do have clotting but not huge. Everything seems "normal" but yet my gyn believes that I have the symptoms of adeno.

I have some symptoms when I'm laying down for a long period of time or sitting and go to get up it feels as if I have a bowling ball in there and cannot straighten up due to the pain/pressure. Also I have from my belly button straight down it feels as if there is a knife cutting me.

Do you think this could be due to the uterus??

Does anyone else have any pain that you have felt was related to gastro but yet have been told it is from the adeno?

I am really close to wanting to get the hyst done and over with but I am afraid the doctor will come out and tell me everything was normal. I couldn't bear another surgery with no answers because the pain is unbearable!

I am really searching for some answers but don't want to make a wrong decision. We're not having anymore kids, my first two were c-sections and during the second one I had a tubal done. I have always had terrible pain always with ovulation but only on one side.

Was just wondering if any of you out there had any of these same symptoms and was told it was from the adeno and if so and you had the hyst, did it help you?

HI Angel 964,

I'm so sorry things are difficult for you.

I didn't have adeno, but I do know a little about it so I will try to help.

The pain your describing does sound like adeno, it very well could be your uterus.

I've known of women who were told they had gastro problems and they did have endo or adeno. Sometimes it is both.

I'm glad to hear your doctor did a lap to see what was going on. Did your doctor find any scar tissue?

I know women with adeno that had a hyster and they are pain free.

I'm sorry I don't have first hand experience. But, I hope I gave you some thoughts.

hugs,

Angel - I was diagnosed with adenmyosis after having an ultrasound, then a pelvic MRI- Have been having heavy bleeding and terrible cramps - the pain sometimes does feel gastro. in origin - I also have bad back pain as well. Sometimes when I'm walking it feels as if my 'female parts' are going to fall out - I am really looking forward to having this all over with - Just doing a hysterectomy - keeping the ovaries, tubes & cervix - - - just 3 weeks more for me - yahoo.
Good Luck to you whatever you decide to do!

HI!
I was diagnosed with adeno after my hyst. I also had endo and prolapse. I had extensive repairs done and even had a lap last week to remove my right ovary and tube and cauterize the cervix. I have to tell you, I finally feel great! Tired and sore but no more pain! YAY! Hope you get some relief soon too! Hugs Raymo

Hi,
I'm sorry you're uterus is giving you such a hard time. I could have written your post. I had a hysterectomy 3 weeks ago, and went into surgery without a diagnosis of any kind. All I knew was what my doc didn't find during my lap. He suspected adeno due to symptoms and family history (my mom had a hyst at 29 due to adeno). I too, pondered the possibility of having an organ removed that had nothing wrong with it. It only took a couple of days after surgery to realize that I made the right decision. The constant heaviness/pain was GONE! I didn't find out the official diagnosis until 16 days after surgery, but I already knew it in my heart. I had irritable bowel symptoms prior to my hyst.

I had a Mirena IUD for 15 months prior to my hyst. Although it didn't help much with the constant pelvic pain, it did reduce the bleeding a lot. Prior to the IUD, I had periods similar to what you described and would spot up to 12-14 days. Immediatley after getting the IUD, my periods got lighter and spread out to once every 4 months. At the end, right before my hyst, I had at most a half a day of spotting every 4 months.

Good luck with whatever decision you come to. PM me if you have any questions!

I was also diagnosed with adeno AFTER my LAVH with anterior repair. All along, the bloat, lower back pain, hip pain, cramping... was all attributed to monthly cycles or other things. But when pathology got done, it was determined that I did have adenomyosis. Ironically, though my uterus was tipped and prolapsed, it was never suspected of being anything other than normal sized!

Best wishes ~

I was also diagnosed with adeno AFTER my surgery, I had my hyst though because I also had endo. I also was diagnosed with Intercystial cystitis after the surgery too, so who knows what was causing the bulk of my pain. Although it would have been a harder decision if I didn't know I had endo. Are there any other tests they can do to determine if you have adeno? I would exhaust every test I could before I made a decsion. A hyst is a life altering decsion. Although if you leave your ovaries you may not have it so bad, but then again there are some women whose ovaries go into shock after the uterus is removed. Good luck with your decsion. I will say that if it weren't for this website I don't think I could have made it though it.

Have you had an opportunity to read through the Hyster Sisters' Endo/Adeno Resources? You might find some helpful information there.

Also, you might consider a second opinion. Maybe another dr would have additional thoughts regarding your condition and to treat you.

in there and many s to you!

Thank you all for your replies and your information and most of all your support regarding adenomyosis. It is comforting to know that when in pain we can come here and find the support we need. I appreciate you all. I am hoping and praying that I find some relief and most of all some answers!

Many s to you all!