Adenomyosis questions

Hello everyone. I'm posting here because I see that the majority have had experience with adenomyosis. My doc is suspecting adenomyosis from a vaginal ultrasound I had done a few weeks ago after complaining about alot of bladder/abdominal pressure. She did tell me the only cure is hysterectomy. Last June, I had a thermal endometrial ablation done for heavy bleeding, a D&C and a cone biopsy for severe cervical dysplasia.

The past several weeks seem to be getting worse with sooo much bladder pressure. Is this normal? I feel so bloated and miserable. I even went to the ER last night and after urine and blood work showing nothing along with a CT scan where nothing else was found, the ER doc said he suspects that a hysterectomy will help with my symptoms. Now that my biopsoy results from last week's colp. are back with mild dysplasia (Thank God!) I'm waiting for my doc to schedule me to discuss the hysterectomy.

Does or did anyone else here have THAT much pressure with their adenomyosis? It's like I'm 9 months pregnant again...having to pee every half hour or so...feel bloated and needed to go up a size with my jeans. Is this normal for those of U who have had a diagnosis of adenomyosis?

Thanks in advance for any personal insight. I hate when I'm in so much pain that I go to the ER only for them to not really be able to tell me anything.

I'm so sorry you're feeling so bad and the pain is that bad. Adeno can be awful to live with, and the doctors just thought I was crazy or something because nothing would show on the scans!

But to answer your question - YES, I both felt and looked pregnant. I had that same "everything is going to fall out of me feeling", the pressure on my bowel and bladder, constantly needing to pee, unbuttoning my jeans all the time....

My womb was tilted backwards and there were adhesions sticking it to my bowel as well, so I don't know how much that contributed to everything.

The hysterectomy has taken ALL of it away. I have aches from recovery and overdoing it, but they're nothing compared to the pain before.

Good luck with whatever you decide.

Thanks Lollie and yes..it's very frustrating when there is so much pain but nobody can give U a definite diagnosis until aftera hysterectomy! At this point I'm looking forward to it as much as one can. I want it OUT like yesterday!

I'm just hoping my recovery is easier than the last procedures I had.

Thanks for your experience. I don't feel like I'm being such a baby now!

You're not being a baby at all! I know how you feel, and I wouldn't wish it on anybody.

Recovery was better than I expected, having not responded well to other surgeries. Even my surgeon was amazed how well I "behaved" myself in theatre and afterwards - he's used to me flaking quite a lot ;-)

Take care!

Hi there I as well had this however I wasn't aware this was what was causing my severe bleeding and pains. It wasn't until after my TVH and the pathology came back did I find out this is what was causing my issues. I have to say since my hysterectomy even with all the pains, discomforts and issues healing I am a much happier person! Having the TVH was the best thing I could have done!

Thanks girls for your stories. Can I ask how your hysterectomys were done since your uterus was probably enlarged? I had a C-Section 21 years ago and remember every ounce of that pain! I know I need to have the hyster but am alittle scared of the pain. What type did U have? Vaginal, abdominal, etc?

TIA!

I had total vaginal hysterectomy. I'd also had Lupron/Zoladex shots which shrank my uterus. The post-op pain was a whole heap more bearable than what I suffered before - and the nurses and doctors were fab at getting it under control very quickly, both in hospital and once I was home.

Thank U ~ That is encouraging to know that hopefully, the recovery period can't be any worse than what it is now.

My womb is tipped as well and it causes me awful back pains. You are so not a baby! I just had a c-section 1.5 years ago so I can't imagine this surgery to be any worse to recover from. Best of luck!

U got that right. I will never forget the pain of a c-section. The only thing I'm afraid of is possible scar tissue from the old c-section and that they may want to clean some of that up.

I'll feel better after I talk to the doctor to get more specific details on what the plan is.

I am so looking forward to my life back without my uterus dictacting my good or bad days!