Adenomyosis: Full list of symptoms?

I can certainly empathize with all of you who also dealt with or are dealing with adenomyosis. I had been back and forth to doctors for YEARS (around 5 years to be exact) suffering from horrid pain, wretched bleeding and clotting that would last for 10-12 days, back pain, just terror every month. My cramps would start more than a week before my period and just to have a bowel movement while on my period would send me to tears it hurt so bad. EVERY doctor I went to just want to slap me back on birth control, which I was unwilling to do and then they blew me off. It was SO frustrating.
I finally found a military doctor here in Germany while in the emergency room (I was bleeding through an overnight pad every 20 minutes) and she listened to me. I had never HEARD of adeno until I talked to her. I feel so much better after my hysterectomy! I had adeno and severe endo (one of my ovaries was actually wrapped around my intestine) This is my first month NOT getting my period and dealing with all that. pain and agony. Thank God for the relief.
For those of you who are suffering through it right now, big huge hugs to all of you. I have been there, done that and know the frustration and pain you are going through. Hang in there....you are NOT alone.

Wow I can empathize with your journey! I just had my MRI this week to confirm what the ultrasound suspected and it is Adenomyosis. I meet with the Dr. on the 11th of December to consult and discuss a hysterectomy! I am ready!

Hi Tygger2 and all,

I have both Adeno and Endo and my doc told me I have to have my ovaries removed or the Endo will come back. Did you need to have your ovaries removed, and if so, how is that going for you?

Thanks for sharing your story!

Phebe

I am 9 weeks post of TVH with A&P repairs. I soo wished that I knew about this site years ago. I had been suffering from all the symptoms that were mentioned except the hearvy bleeding for at least ten years. Thought it was gastro or bowel issues for years. I even thought the cramping was from bowel issues. I would tell the dr about all my symptoms and had test and everything was okay and I thought that was just how I was going to be. Finally after I realized it was not a bowel issue and it was my uterus and had a transvaginal ultrasound that confirmed I had adenomyosis (never heard of it before this) I decided between the prolapse & the adeno my only option was hysto.

Sorry so long... I just wanted to tell you it has been great so far. The healling and recovery will take time but it was well worth it. I feel better and have more energy now!!
Most of my symptoms are gone and cannot believe I went so long before something was done.

Good Luck to you ladies and remember to rest, rest, rest after surgery!!

I feel for both of you, Castaneda and Phebe. I will be keeping both of you in my prayers as you are going through this journey. Phebe, in answer to your question, I kept my ovaries. My doctor said she could not guarantee that the endo would not come back, but we will keep an eye on it. I am only 33, so I guess I figured I would rather watch instead of removing them altogether, especially if I am one that does not have any more issues after the hystorectomy. But that is just me and my personal view, what works for me may not work for you. Good luck, sweethearts! I am here if you need me!

Thanks Tygger2 I received my confirmation of the Adenomyosis yesterday!.......The MRI confirmed it. I have an appt on Dec 11th to consult with the Doctor about my hysterectomy!...........I am one week post period and I am having cramps and bloating as if it was one week before! I am so frustrated but I pray that there is a light at the end of the tunnel!....I hope by this time next week I will have a hysterectomy scheduled!!!!!

Thanks Tygger2! Castaneda, we might be getting hysterectomies around the same time! But I have to wait until after my colonoscopy on Christmas Eve before my doc will schedule it.
I used to have the pain that close together also. Now I am on a period 24/7 and pain all the time!

Phebe so sorry you have to endure a colonoscopy on Christmas Eve! But I understand when you have to have things done in order to move forward in the right directions you take what you can get! Why the colonoscopy?.....I don't care if I have my surgery scheduled during the holidays I just want to get this out and over with! I have had symptoms for about a year and when I learned of my diagnosis it made me feel so happy to know I wasn't going insane in the brain! I really am so tired of all the pain I could burst!........I hope that we get are surgery scheduled soon and will certainly be real hyster sisters!!!

Hi Castaneda!
Yes, I am also trying to move quickly on this, and just get it over with!! My doc has ordered the colonoscopy because she wants to rule out Endometriosis in my colon. I have had some bleeding in that area and she wants to know what it is from. Since I have both Adenomyosis and Endometriosis, if I also need bowel repair, she wants to schedule both surgeries at the same time, so that I don't have to go through them separately. But I am hoping I do not need the bowel resection!!
If my colonoscopy results are clear, I will be able to schedule my hysterectomy at my gyn's next available surgery time slot! I should know my surgery date by the week of Dec. 28. I will be having Da Vinci surgery for the hysterectomy. How about you?

I won't know anything until a week from today when I meet with my new Dr. My Nurse Practioner who has been caring for me the last 4 years is moving to this new female Dr.'s office and she wanted me to get on her books as soon as I could, she starts there on the 14th of Dec. When I spoke with my Nurse Practioner she told me that laproscopic hysterectomy would be the route that they would want to go and she doesn't see a reason that I couldn't have it done that way. SO my next appointment will be to go over everything with the new Dr. and consult with her about when I can have this done. I don't think I will need any other testing as I was confirmed with the follow up of the MRI this week after haiving the transvaginal and abdominal ultrasounds!!!....I too hope you don't have to have the bowel resection!!....I have had 3 kids and a tubaligation and am 46 years old. How about you?