I would like to hear from ladies who had Adenomyosis and had a hysterectomy

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Originally Posted by SandaSavi I didn't know I had Adenomyosis, but suspected, until my pathology report came back. I am so happy to have had my TAH and my DR said with Adenomyosis really having the Hysterectomy was the best decision. I feel the same way. Now, I am only thee weeks and 5 days post op but I know that I will not have my diseased uterus to hold me back anymore and that is my outlook. When I am fully recovered I am going to enjoy life and not worry about my next period and why I never stop bleeding. I know that life always throws us bumps but I hope that I continue to recover well and get on with my life. I did have my cervix removed, and you may want to think about it because there is some risk that because the cervix is part of the uterus there could be some adenomyosis in the cervix. Don't know for sure but keeping the cervix had its pluses and minuses and I know one draw back is that it can still give you mini periods with cramping. I know other sisters have more info on this but just wanted you to know why I didn't keep my cervix.

I had intense bleeding, my longest stretch was 4 months. I had to quit my job, I lost my quality of life. I became a bed ridden housewife two years ago. No one, no doctor, no specialist, no one, knew what the hell was going on. I was diagnosed with a hormone imbalance. given birth control pills, and continued to suffer for two years after I left my job. The bleeding, cramping, and suffering continued until I came here, got a second opinion out there, and found a doctor who would bravely take my uterus.

I am in week 2 of post op. I have had my uterus and cervix taken, my ovaries and one tube was left.

Pathology reported severe adenomyosis and endometreosis were the causes of my suffering. I had my cervix taken to be sure I would not have mini periods or cramping or any more suffering. I kept my ovaries to continue producing hormones.

So far I feel great. I can tell I will find myself feeling quite different once the surgical locations are healed and I'm not creaky and crampy, because I have smooth straight hormones. I've not had one single fluxuation. It's been awesome. Part of my problem was the breaking down crying every few moments or screaming the other moments. I've not had those urges. Now that the diseased uterus is gone, even my blood pressure is finally good (i'm a hypertension patient) but that could be to not smoking also. I'm not sure what the future will bring, but so far I'm glad I'm on the road to recovery.

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Originally Posted by tkbeard Miska & Lollie: I appreciate all of your input! I agree, this is a huge decision. I was certain that a hysterectomy was the right choice 3 months ago, but I think because it's so close to my surgery I'm getting a bit jumpy. I have had this pain for over 5 years and the only diagnosis that makes sense is adenometriosis (thought it was endo until the scope last August). Everyone had advised me to get 2-3 second opinions, which I have done. I feel like I have covered all my bases. I just wish my surgeon could be 100% sure, but I realize from the postings on this site that it extremely difficult. I can't wait to see what pathology comes out with. 2 days left...

From all of my research, its extremely hard to diagnose adenomyosis. I went ahead with a blind hyster only being diagnosed with a hormone imbalance. It was just a no brainer that the bleeding and pain would only continue and possibly get much worse the longer I was left out of the conversation between my angry uterus and my poor functioning ovaries.

I told the surgeon "you come wake me up the minute pathology reveals an alien ship has landed in there and is trying to take over the world!!!!" He laughed...but he knew they would find something out of place.

Sure enough. Endo and Adenomyosis. Justification never felt so @#$@#$# good!!!!!!!

And to my old OBGYN who wanted an ablaision..AND MORE BIRTH CONTROL....this finger is for you huney........XD

What I don't understand is why it takes so long for the doctor to agree that surgery is your last option. If you are losing your quality of life and it is obviously tied to your cycle why over analize it. Of course it is major surgery, not to be entered into lightly, with age to be considered but when you exhaust your options with no favorable results why not offer surgery. They say adeno can really be determined only after the surgery so I think if a women is willing to take the chance then it should be considered.

I am 3 weeks post op. and am so relieved. I feel so lucky after reading so many stories on this site. I only had serious consistent problems for about 5-7 yrs but nothing extreme until 3 yrs ago. At that time hysterecotomy was discussed but we wanted to avoid that if possible.
Each option, ablation and Lupron did provide relief but only temp so my next step was surgery. Adeno was suspected the whole time and considered even though it could not be confirmed (still waiting for confirm but doc said things where bad inside my uterus). Truthfully, they could tell me I had a flower pot growing daisies in my uterus and I would not care....just take it out.

I'm just glad my doctor had me try options and when I didn't have favorable results, he allowed me to make the decision without making me wait.

I wish I had started with a doctor who actually cared about my case. Instead, I got a condescending well fare doctor who blamed every complaint on the fact that I was a one pack a day smoker. That's why I gave her that pretty finger LOL. I was so glad to leave her office.

I had adenomyosis and endometreosis as well as fibroids and ovarian cysts. It took years to convince my doctors that something wasn't right, so when I found out I had adenomyosis and my hyster was scheduled I felt like "finally, someone believes me!" My endometrosis was discovered when my doctor opened me up. I kept my cervix due to scar tissue that had wrapped around it and my bowels, and my doctor couldn't take it without damaging my bowels. She cauterized it so I wouldn't get mini periods, and so far it's worked. One of my ovaries was taken out, the other one was so wrapped up in scar tissue it couldn't be found, even with an ultrasound. Weird stuff.

My SAH was the best thing I did. Before I had it, I was always tired and when I wasn't dealing with the heavy periods that lasted 10-12 days, I was thinking about my next period or dealing with the lack of energy my periods left me.

The best piece of advice I can offer is if your doctor makes you feel bad, or criticizes you or doesn't listen or anything of the sort...go find another doc...and if you have to ...another and another, until you find one who actually cares and will listen. There is nothing better than a good, caring doctor. (and trust me...that is the kind you are going to want when you have surgery anyway...not one you had to arm wrestle into giving you surgery.) Like most, I have had my share of bad docs, but ever since we moved to a new state a year and a half ago, we decided we wouldn't put up with it anymore, and did the above...looked and looked until we found the docs that truly cared and listened. And now our whole family has the best bunch of doctors ever, and we are so relieved. I love my GYN-he is so truly amazing. My last Gyn didn't know what to do with me, so he thought...maybe I had a hernia (even though he didn't feel one..lol.) and wanted to pass me off to a general surgeon. My current gyn got right down to business, and a few visits and tests later we had a hysterectomy scheduled. There were clear problems on the test results, and later more issues on the pathology report after surgery (including adenomyosis).

I cannot emphasize enough that if you are at all unhappy with your doctor, (and you have the option to...) go find another. There are good docs out there..it can sometimes take some time though to find them...

(((HUGS))) to all. I hope you all end up with as wonderful a doc as you deserve.

I have read all the posts in this thread and now I will add my own experience. In June 2009, I was diagnosed with Adenomyosis thru an MRI. At the time, I was bleeding very badly almost non-stop and was in much pain. In September of 2009, I had an LSH, leaving my ovaries and cervix intact. After my surgery, I felt fine and only bled for 2 days afterwards. I thought "this is great!" I gave all my pads to my daughters and I was looking forward to having a life without periods!

At the end of November, while away on a mini-vacation, I started spotting. Nothing major, I just noticed blood on the toilet tissue when I wiped. I was still concerned and called my doctor. I went in to the office and had a cauterization with Silver Nitrate. The bleeding stopped but only for 2 weeks and the next episode of bleeding was much worse, I had to wear a "light-day" pad. By the end of January, along with more and more blood, came the intense cramping and pain. I experienced pain to the point where it would wake me up in the middle of the night. The cramping and pain would be present even when I was not bleeding. I had more Silver Nitrate treatments over the course of the year but NOTHING helped.

I finally made an appointment to see my surgeon because I definitely felt that my "quality of life" had slipped again! He told me that he thought that my Adenomyosis was now present in my cervix. He also took a biopsy of the cervix to rule out anything else. He told me that in some women, the Adeno moves onto the cervix and just like as it is with the uterus, the only cure for it is to have a trachelectomy (removal of the cervix).

I wish that I had known about incidences of women having Adenomyosis present in the cervix. I might have considered having my cervix and uterus taken at the same time! The pain that I am feeling is just as intense as the pain I felt when I had my uterus. If I could have prevented this, I would have done so all at once. I just cannot live with the constant bleeding, cramping and pain.

My Trachelectomy is scheduled for January 3, 2011 after much research and thought. I am not looking forward to it at all but I know that it needs to be done so that I can go on with my life. I will still have my ovaries and my surgeon assured me that ovaries DO NOT bleed!

For those of you who have Adenomyosis, just consider every possibility including that your Adeno might also be present in your cervix. You will not know it until after your hysterectomy if you experience problems. Like I said, if I had known that Adeno might also be a problem in one's cervix, I would have had the cervix removed along with my uterus

I am 7 days Post-Op DH, pathology showed Adenomyosis, my doctor suspected... she was right. I only had my uterus removed, kept everything else. I feel great, this is one of the best decisions I have ever made.

Returned to work today - feeling pretty good, a little tired but no real pain.

I'm 43 and happy to say I will never have the pain or month long bleeding EVER AGAIN!

Regarding the right doctor... I was fortunate enough to have two daughters in my mid twenties. I'm 35 now and always went to the doc I trusted who birthed my babes. I have Interstitial Cystitis (IC) as well as suspected Adenomyosis and scar tissue adhesions. I searched the internet for a local doctor and I found my urogynecologist. Like RJS777 said, find the right doctor. Since IC causes major pain as well, we didn't move directly to TAH, but after intensive treatments for the IC and still having severe pain, he did laparascopy that revealed the suspected Adeno and the scar tissue adhesions. I promise if I had stayed with my other OB/GYN, I would still be told to take ibuprofen for the pain and drink pear juice. He's a good doctor; but having found my doctor who has a secondary specialization in pelvic floor dysfunctions; it was a matter of less than three months to final diagnosis and hopefully, cure.

I go in tomorrow for the TAH and I can't sleep. - Feel scared to death. I believe it's the right decision but I'm all over the place emotionally.

The women here and your stories are truly a great inspiration and source of insight.

The cervix is being removed as well as the uterus. My ovaries are still good.

I'm nervous, but looking forward to it. I just pray this relieves all the pain. - It was SOOOO good though to be told it wasn't all in my head.

My hyster-party will be around 10:30 a.m. EST so please say a prayer and wish me the best. Thanks for all the support!

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Originally Posted by Mishka49 Hi, Just for your info no it is no coincidence re "hysteria" and "hysterectomy". Removal of a woman's womb was once consiered a "cure for hysteria". It comes from the early Greek language - and I think it was Hippocrates who believed that most female "hysterical" complaints came from the uterus. (LOL - thank goodness the medical profession has changed their view on this). However, one can easily see why this may have been thought. It CAN make one almost hysterical!! I should have wiki'd before I wrote this so Im relying on memory but I am sure that is the connection - many poor women had their wombs removed etc due to just having "nerves" or what would nowadays be called generalised anxiety disorder. Same goes for "lunatic" - because for reasons we don't yet understand a full moon does exert an influence on somebody already with a mental illness but in the "olden days" people who were "mad" were called lunar-tics because they were oft at their worst around full moon time. Interesting where so many of our words originated from isn't it? (and good we are now MORE educated!!) :-) Susan

Good to know! Thanks for the clarification.