Anyone else with Adenomyosis?

Just curious to hear from anyone who has Adenomyosis and what you decided to do. Surgery? I'm supposed to have a TAH but having second thoughts. Things are happening too quickly! I know it's best but just searching for other suggestions so I covered all my bases. Thanks.

I am right here with you sister...
I am going to have a TAH on Dec 7th... The pain and the bleeding is becoming more than I can deal with.

Kudos for Looking into all of your options. If you can do something that does not require a TAH and will be a solution to your problem the you rock on girl.

You are in my prayers

Angel314

I have Adenomyosis. I am going ahead with surgery, but have had problems for years..for about 13 years or so. I cannot wait.

Please make sure this is your decision and it is what you want to do. It is a big decision to make.

Much luck to you!!!!!
shlely

Hi, i had adenomyosis, and suffered for 20 years. I finally had my hyst in jan2004, removal of uterus, cervix, and one ovary. I kept one ovary because I was 40 at the time and didnt want to go into surgical menopause. I feel to young for that, plus I had my babies late. I have a 2 and a 4 year old. It was the best decision I have ever made for myself. no more pain, bleeding, cramps. I feel like a different person. also, I only have the one ovary, but so far so good, no HRT, no signs of menopause, surgical or natural. Research, and then make a decision. go with your knowlege, and your gut, women have have very good gut instincts. best of luck, carol

Everyone will tell you that these decisions are tough ones, and only you can make this decision. I have been problematic since I was a teenager and only started to become aware of my uterus since I went into premature labor at 26 weeks and required bed rest and terbutaline to go to term. When it was over I asked the Dr what happened to me. He stated I had a irritable uterus. Well I guess so, as since I had a Csection things have never been the same. I think I always minimized my pain due to back problems and thought my pregnant belly post C was just the way it is for some women. My blood pressure got real high 3 years later and was taken off BC because of my age I was encouraged to have a tubal. Things then started to get bad again, but I ignored the discomfort. At my tubal, endo implants were seen on my ureter, and Dr told me all women have a bit of endo. We won't do anything till it becomes problematic. He handed me a pamplet. 1 1/2 yrs later I started having sharp pains before my period and was miserable 3 out of 4 weeks. Blood showed up in my urine at my annual visit. They did an USN which showed an endometrioma and liver cysts.I saw a different Dr who put me on Depo Provera. The flank pain went away but I didn't have a period for 2 months then went for a whole month. I was scheduled for a hyster as the cyst looked suspicious. After I was sent for the CA 125, I was so scared and just wanted the works out. Subsequently my endometrioma ruptured and I became very ill. My hester was cancelled. Further testin done, many USN, CAt scans and such, started having severe pelvic pain, and requested to be rescheduled. My uterus is large, have a thickened wall and abnormal blood patterns. My decision became very easy as my quality of life has declined dramatically and rapidly. I think you really need to be objective about your problems, do some research and you will come to a decision that best suits your needs. Best of luck to you during these difficult times.

I had adenomyosis, but it was not diagnosed until after my surgery which was 10/20. I could tell right away that things were better, even with the pain of surgery. One huge plus is no more migraines which were also a side affect of what was going on in my uterus. I had had trouble with my periods since I was in high school, but the solution was the bcp, but things just got progressively worse even with trying different things including Lurpon. I didn't have the surgery because of the migraines, I had the normal cramping, bledding, irregular periods also. My uterus was the size of a 14 week pregnancy. I also had fibroids, but they were small. Adenomyosis was the major cause of most of my problems.

Hi,
I totally understand where you are coming from. When I learned I had adeno in June, I put the brakes on so quickly. The recommendation for a hyst happened so fast. One day I had a period that did not want to stop (both the doctor and I thought I was premenopause) to hyst. I took some time to analyze all the pains and problems that I had been experiencing. The more I researched the more I could connect other problems to the adeno. Bleeding was not my main symptom. I had been experiencing back problems and most importantly gastric problems. I turn out they were both adeno related. Once I started analyzing, I could trace back symptoms at least 4 years if not longer.
For me, the pain increased and became almost a constant companion in the last two months. That is when I made my decision to have my hyst. I wanted to take back my life. I at peace with my choice.
Just take your time, do your research, get to know your body's aches and pains, become aware of even the smallest ache and that may help you understand why you are having the hyst done or maybe deciding to take another road. Good luck to you.

Maria

Simcha,

Thank you for sharring your story... I too have migranes I just never thought that they would be conected to my uterus problem... Oh how I hope that the TAH will clear my migranes up...

Angel314

Angel,

My headaches post surgery were rebound headaches from the pain medication. So I went off the pain meds. I have had a couple of migraines, but now the prescription meds for migraines take them away and they are drastically reduced in frequency. Before surgery I had two migraines that lasted three days each, just in that week. Since surgery I have had two mild headaches within the three and a half weeks post op.

I had adeno and every procedure that was done only made things worse. I also had migraines. The day after surgery, I was already in less pain than I'd been in for weeks before the day of my hyster. In the 14 months since my hyster, I've had 2 or 3 migraines and they were when I forgot to change my patch. Once I changed my patch, the migraines would go away...and those were the only in the early days. I have no more trouble with the bloaty, achey, heavy feeling that I used to have all the time.

Good luck to you,
Cat