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Adenomyosis - anyone else "diagnosed" with this? Adenomyosis - anyone else "diagnosed" with this?

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Unread 10-06-2011, 11:27 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

I also had suspected adeno prior to surgery (that was part of the reason I had surgery - the other part was due to prolapses). Doctor did pathology on my uterus right there in the OR and when I spoke with him in post-op, he confirmed to me that I did have it. It was nice to know I wasn't crazy all these years, but even if I hadn't had adeno, I still would have done the surgery. Good luck to you all!
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Unread 10-07-2011, 02:57 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

After reading what you ladies had to say I too have learned more than before. I have a sore abdominal with pain, pain in my right side that is sharp now starting in my left. Also I have stong pains in my rectum, back and around my naval. I was fearful the rectum pain was having to do with a colon problem, but did notice it can happen at anytime. Tireness, fatigue, loss of memory, along with pain and cramping each day have become my daily schedule. I am having a hard time doing anything in the day due to my pain level. I am having my hysterectomy due to I have heavy bleeding, spotting pain and high risk of endomentrial cancer. Not sure until they do my surgery weather I have it or not, but I have all the warning signs. My Gynecologic Oncology doctor feels have an TAH/BSO is the best way to go. Had fabroids and endomentrial surgery back in 2003 using the lap, felt better for about two years and than things came back with a vengence. Best wishes to you lades.
Unread 10-07-2011, 09:07 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

I am now one year and one month after my TAH. And I don't regret it for one minute. I'm only sorry I had to jump through all the hoops to get it done.

Gone is the pain (I didn't know how much pain I was in until it was gone) in my back, belly, hips. Gone is the monthly bleeding out for a week at a time. My iron level was so low that my DD (who is a lab tech) said I was "this close" to a transfusion. Gone are the huge blood clots and flooding out that no tampon or pad could hold. Gone is the foggy head and tired because I was so anemic. Gone is the expense of "feminine products" and finding the most absorbant tampon and pad available. Gone is the midnight flooding that drenched my pj's and sheets. Gone is the scheduling of anything around my period. Gone is carrying around a suitcase of supplies and a change of clothes. Gone is scheduling (yes scheduling) sex around my period and pain.

Now I have my life back. I have more energy. I have more time. I am more creative. I get more sleep. I'm not in pain anymore. I'm not foggy headed due to anemia. I can go on vacation (or out to a restaurant) whenever I want. And sex is great, we can be spontaneous - something we haven't had for so long I can't remember.

Things are different now, because I don't have my cervix, but I am so glad I had this surgery. The other side is wonderful!
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Unread 10-07-2011, 09:38 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

PMJA - thanks so much for your encouraging words. Makes me look forward to having this all behind me! Do you mind elaborating on things being different without the cervix? If it's too personal, don't worry about it. But I'm still in the pre-op deciding process. 99% sure it's going, but there's that 1% that's unsure...
Unread 10-07-2011, 10:11 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

RE: Sex is great, different, but great.....

Let's see if I can put this in words.....

Some women, me included, enjoy the feeling of a penis "bumping" against the cervix during sex. Some women may need that "bumping" to achieve orgasm. Some women even feel uterine contractions with an orgasm.

Since my hysterectomy, I found out that I can achieve an orgasm even without my cervix. So it is still great, but different.

The first time we had sex, it definitely wasn't a WOW (but DH said it was!), but it was fine. But there were a lot of emotions involved: I was a little scared - would it hurt, would I bleed, what if I'm not completely healed, etc. But it was different and DH said it was different too. He says that it does feel a little different because he can feel that I don't have my cervix, but it still feels great. Just like my hand is different, just like his hand is different, etc. Different, but still great.

But we discussed it and I pointed out to him that different is the new normal and we'll have to accept it. Just like when he had back surgery, we had to accept a new normal. I'm just going to consider all the fun I'll have learning to "have fun" all over again.

Do I miss my cervical/uterine orgasms? Yes, I do! But I also miss perky boobs and a flat stomach. But I love the new closeness to my DH, love being able to be spontaneous, love being able to travel. You get the picture. No more fear of pain, bleeding, losing a week (or more) every month because of the pain and bleeding. I'd definitely say sex is better now than before.

Does that help?
Unread 10-07-2011, 10:19 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

LOL, I miss my boobs and tummy too. My cervix and uterus are definitely involved, so I'm quite curious how things will be afterward. The spontaneity, the intimacy, all those things sound wonderful. Sex has been painful about half the time lately (something that should be taken care of after hyst!), so there's always a bit of anxiety these days. Thank you so much for taking the time to answer, and answer in such an honest, understandable way. I truly appreciate it.
Unread 10-07-2011, 10:52 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

I was exploring videos and info... there is a great you-tube video with a woman who has ando and explaining how she felt..
Also this video is linked to a new surgery procedure that can save the uterus for those with ando and still want to have children...
might have to travel or have your doc learn the surgery but it is working for woman.
The surgery is called Osada and is offered in St Louis right now...
Unread 10-09-2011, 05:27 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

Wow!! I too learn something each time I come on here. I have rectum pain as well, pain through hips, pain in legs (apparently fibroids can cause sciatica) this pain is not exclusive to periods as I do not have them since a mirena was put in. However, my

Gyn can't say if the pain I continue to have is my uterus trying to expel the IUD or if I have Adeno. I originally had the mirena put in because of fibroids and was hoping it was going to work. I too have the bowling ball feeling and am sick to death of feeling like my period is going to come at any time.

The more I come to terms with surgery, the more I look forward to getting my life back. I wish I didn't have to wait 10 weeks til surgery.

Thank you ladies for being here. It is so nice to be understood.
Unread 10-09-2011, 07:49 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

I had a TLH on Oct 4. My doc always suspected Adenomyosis but she confirmed it after my surgery. I was also relieved that I had an answer for all the pain. I don't regret the decision of having it done. I'm still recuperating and will be for the next few

Weeks. Make sure you do as muCh research as possible. Best of luck !!!!
Unread 10-10-2011, 05:13 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

Sending prayers for a quick recovery Nessabell! I will be looking for your post-op posts to see how you're doing and to see what I have to look forward to next month.

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