28 y/o with adenomyosis diagnosis, facing hysterectomy

Hi all, I'm new here and really glad I found this site. I was diagnosed with adenomyosis almost 2 years ago. I have had the pain for over 3 years now. My GYN is strongly recommending a hysterectomy and has been for about a year. I have severe sharp, searing pain in my lower left abdomen along with constant bloating, mood swings, fatigue, and headaches. I have 1 daughter who is 7 and 2 step sons. I have no desire for more children but being that I'm only 28 the thought of a hysterectomy scares me. I go for a second opinion next week but I know my doctor would not steer me wrong. He has listened closely and done everything I've asked but I feel like I need to hear it from someone else.

On any given day I will gain 4-6 lbs when my abdomen swells. It mages me feel sick to eat and it's so tender to touch. I have good days don't get me wrong but the most frustrating part is I want to exercise but when I do it puts me down in excruciating pain for days. Sometimes evend walking feels like it could drop me to my knees. Does anyone else have issues with exercise and it causing extreme flare ups of pain? What would you do?

How did your doctor diagnose adenomyosis? I have read that often it is mis-diagnosed. Apparently an MRI can give a very good image and aid in correct diagnosis.

Have you looked into your diet? Many of your symptoms sound similar to a food allergy or sensitivity, Crohn's disease, Irritable Bowel Syndrome, etc. Perhaps your symptoms are being caused by something you are sensitive to, like for example, wheat, dairy, etc. It is certainly worth a try to see if diet changes could help ease or eliminate your issues. Maybe ask for a referral to a gastroenterologist to be sure.

I would carefully look into your options and get second opinions before permanently removing your uterus. It would be a shame if you did that and your issues did not improve.

Good luck!!!

He did a laproscopy with biopsy. He sent to me to GI to rule out anything there. Colonoscopy and all tests came back normal there. Biopsy showed adenomyosis and he observed it through the exploratory. He was hoping to find scar tissue from my c section but was disappointed to find the adenomyosis. He took my IUD out upon my request after advising against it because I was not convinced my pain was not coming from that. He did a D&C last July which helped with the frequency of my periods. But last month and this month I'm back to bleeding multiple times a month. The pain is increasing as well and I'm passing almost all clots. I'm at my wits end with all of this. My personal life is suffering the most at home.

That's interesting because supposedly biopsy will not give an accurate diagnosis of adeno. MRI is supposed to be the best diagnosis method, however even that is not perfect. Did you ask for an MRI? I would want to have as much certainty as possible before making a decision that is permanent.

I'm glad you ruled out GI issues.

I hope you are able to find the solution that works best for you. It really is life altering having to deal with these issues. I never had pain, thank God, but can relate to the very heavy and long periods. Hang in there and don't rush your decision if you can stand it. Taking the time to find the best solution will help you feel more confident in your treatment options.

I was sick for over 6 years with pain, anemia, very bad bleeding, cramps, etc etc etc. I finally had hysterectomy when I was 24 and I don't hurt anymore. I was sad to have the surgery, but now I can get out and enjoy life.

I don't know if it's too late to reply to this one, but I'm 31, and just had my LAVH. I also had the severe mood swings (diagnosed as PMDD), bloating, menorrhagia, migraines, as well as other health issues that prevented me from just taking the pill or even lupron.

I will say in my experience that immediately after the hysterectomy I personally felt a serious feeling of zen. And it's continued; it's almost like there was a monster inside my head rising (that would have been the out of control hormones), and now it's just gone. The pain is gone, those roaring angry feelings are gone, the bloating is a fraction of what it was, heck, even my food cravings are gone. I've had a few migraines so far, but the same urgent-use migraine medication that I was using pre-hysterectomy has worked well, and I'm still taking my daily preventative medication, too (that is in my experience, though, the neurologist warned me it was a 50-50 shot that the same meds would work).

Which is not to say that it's been simple and easy and perfect, because it hasn't been, but so far I'm incredibly grateful that I went this route because it feels like getting myself back.

I am 30 years old and my hysterectomy is scheduled for Sept. 1. The reason for mine is a huge fibroid causing severe bleeding with clots, cramping, general pain and fullness in my abdomen, and major fatigue. I fully expect that after pathology I will have been diagnosed with adenomyosis. There was no need for my Dr. to explore any father as the fibroid is reason enough for surgery. Hysterectomy wad recommended nearly a year ago but I put it off because my bleeding was under control with my IUD. I wish I would have listened or got a second opinion sooner because now I'm miserable! Everything got very bad very quickly. My advice is don't wait!