Adenomyosis, scared and so unsure!

Hello. I am so thankful to have found this site today.

I was diagnosed with adenomyosis early this year after MANY tests. I have been having severe pain on my right side for a very long time that seemed to be from ovarian cysts but then the pain continued with clear ultrasounds. OB said it was GI - GI said OB and thus - many scans with/without contrast etc. Only thing found was adenomyosis. At least that finally explained the heavy, painful periods I have had for years that my previous OB said repeatedly it was a "fact of life".

I sometimes feel like I am forcing my way thru the day - exhausted, pain in my back, bad cramps that no meds seems to help (over the counter). Sex doesn't always hurt - and sometimes the discomfort is more b/c I feel so bloated and the pressure on my mid section.

I don't want to keep going like this. I had another ultrasound last month b/c the bloating was bothering me so much I diagnosed myself with ovarian cancer (and I honestly and am not one of those over-reactors who has ever illness on the internet!) The ovaries were clear but the NP I saw said I have 2 small fibroid now. Never had that before. I understand though that fibroids can misdiagnosed and be nodular adenomyosis. Have no idea what could mean.....

When my new OB talked to me initially about the adenomyosis, she did say a hysterectomy or menapause were the only solutions. At the time the idea of surgery (and still today) scared me too much, but I have to do something. This is day two of just wanting my heating pad and the stretch out. It feels like I have a 20 pound weight inside me! I feel like I am failing my husband and two boys (14 and 12) on these days.

I made an appt with my OB for Tuesday to talk to her about having the surgery - but am I putting myself at a higher risk for other issues? (surgery issues or other...) It will hard for my family if I do it while I recover, but know they will be supportive and help.

Just so unsure!

Christine

While I can not tell you what to do I can give you my story and maybe it will help.
I am 45 years old and my husband and I have 2 boys ages 18 and just turned 17. I have always had painful periods even when I was a teenager. I just learned to deal with it. When I turned 40 I started to have really bad periods. I would have a very heavy flow with clotting and the would last anywhere from 12-14 days. I was miserable!! My ob/gyn would just tell me that it was part of life and getting older. So I just learned to deal with it. Well , one day I started my period and it was heavier than before and tons of clots. To make a long story short I bled nonstop 24/7 for over 4 months and my Dr. tried various things to get it to stop to no avail. So he reccomended hysterectomy. TO say I was terrified is an understatement. But I knew that I had to do something because I was literally bleeding to death. So I decided to have the surgery. I had my Total hysterectomy on June 16,2010. When my pathology report came back I had numerous things wrong with me that I nor my Dr. ever thought I had. I had endometriosis,adenomyosis, severe adhesions(I had 2 c-sections), my ovaries and fallopian tubes were covered in adhesions and were adhered to my pelvis. My left overy was wrinkled,gray and rubbery. I had bulging hemmoragic cysts on both ovaries,my uterus was 4 times larger than normal,my cervix was chronically inflamed and had precancerous cells. I am sure there is something I am forgetting. So you can see that it was a very good thing that I had my hysterectomy when I did as I was told that within 6 months to a year I would of had cervical cancer. There is more to my story but this is the short version and gives you the main things.Good Luck in your decsion and you have found the right place to come to for support. I did not find this website until I was 5 weeks postop. It has helped me a lot with things.

P.S. One thing I forgot to add is that I had numerous fibroid tumors in my uterus ranging form 2-over 6cm. Also while it really has not been to hard on my husband and boys. they have stepped up to the plate and taken on all the household responsibilties while I am recovering. I am just now starting to be able to help with dinner preparations but still not able to do housework or much laundry. It has been a long recovery for me due to some unforseen cirucmstances but I can say it is so worth it. Good Luck!

I also had adenomyosis. I had a TLH on the 25 of aug. for me the surgery was the best thing ever i remember how i was allways in pain i am 3 weeks post op. u will feel so much better afterwards. I feel like i can start living my life again. If there is any questions i can answer 4 u let me know. Best of luck

Hi,

I am having same problem. Adenomysis, (how do you even pronounce it?) discovered during hysterscopy but didn't show up on the report. I'm going to take no chances, I'm having a hysterectomy, i have a nabothian cyst on cervix so that too is coming out and I'm only 37 so they won't let me take my ovaries out but otherwise I would have them out. From my standpoint, female organs are a cancer nest so I only keep what I have to, I'm sick of the daily feAr that there was a mistake in my clear biopsy results. And for what's it worth, I recommend a biopsy but not a blind one at least with hysterscopy.

sorry for all your going threw, i had adenomyosis and use to tell my hubby i feel like i have a bowling ball in my tummy ,
the pain and bleeding and everything was so bad i could barely make it through a day . Getting a hysterectomy is a big deal you
should way yoru options , but i can tell you for me it was the best thing i have ever done. recovery is hard but with suport it is not
bad as you will fear. good luck.

	Quote:
Originally Posted by rtcc2003 I also had adenomyosis. I had a TLH on the 25 of aug. for me the surgery was the best thing ever i remember how i was allways in pain i am 3 weeks post op. u will feel so much better afterwards. I feel like i can start living my life again. If there is any questions i can answer 4 u let me know. Best of luck

Rtcc, so you are about a month out now! Did you have laproscopy and are you back to work? How did you feel one week after? Thank you for you help

RTCC2003-
I am 38 and got diagnosed with adenomyosis last month at the age of 38. I am scheduled for a TVH next week on the 28t. After years of horrible pains and periods, I finally took the next step.
Unlike most of these other women, I havent had a bunch of tests. I kind of ignored the symptoms and didnt go to the doctor, just dealt with it. When I went to my family doctor for other reasons, I would mention how horrible everything was, but that was it. Of course, she kept records of it.
By the time I made it to the gyn, she read all my paperwork from my
family doctor, did an exam and told my what my options were. Hysterectomy had never crossed my mind.
I have an 18 year old stepson (who lives with us) and a nine year old son, but wasn't sure that I was done.
I decided to got through with the hysterectomy, and I feel sure I've made the right decision. I have had time to make arrangements for my kids and and they are fully aware that Mom is going to have surgery and be out of commission for a while. You will be surprised at how your kids and hubby will step up to the plate!
I have been doing alot of research on this site (it's wonderful!) and have a much better idea of what I'm in for and what my family is in for after this surgery.
At this point, my biggest fear is exactly what else the doctor will find when she gets in there. But, I am also excited to not have to carry around this STUPID bowling ball anymore!
Do your research and weigh your options, it comes down to your decision. In my case, a couple of weeks recuperating is worth it to be rid of all the pain and all the missed time with my kids!
Good luck to you...

The decision has been made, surgery next friday, am scared but will not back out! Help! I think she is going to do it lapro, I have to ask her again, was overwhelmed when she gave me the date yesterday, am trying to kick the fear that they will find something else too!!!