Adenomyosis without endometriosis?

I had my lap. surgery yesterday, along with LEEP and Cone biopsy. I have severe dyplasia (CIN III) and also chronic cervicitis. MY dr. says he did not see anything abnormal while doing the lap. so we now have to wait and see what the results of my biopsies are before we take another step. But a nurse mentioned to me that my problem could be adenomyosis, even though my dr. does not talk about it at all. I have read on here that many people have chronic pelvic pain, as do I and that many times people who have CIN III are asked if they would like to have a hysterectomy. I was told by one female doctor where I go that I did need a hysterectomy. But she is still doing her training and cannot do surgeries yet, so she only went so far with my problems, then I had to be handed over to a doctor in the clinic where I go. He says there is no need in doing a hyster. He said yesterday that if my biopsy comes back not showing any cancer, that I should maybe see a doctor about my stomach, that I could have problems in my stomach causing my female problems. I am sorry but this doesn't jive with me. I do not have stomach problems. I have lower back pain,I haven't been able to have intercourse w/my husband in months, I am in constant pain all the time. I take vicodin every 4-5 hours! But a nurse did mention to me before having the LAP that I could have adenomyosis. But Someone said to me yesterday that usually only goes along with endometriosis.

Has anyone here had adenomyosis without having endo? ALso, what were your symptoms? I do not have the heavy bleeding, but the nurse told me that some women don't have that, but that they do have chronic pelvic pain constantly.

Any info would be greatly appreciated

Hi there. I had a TAH for fibroids on August 26th and was surprised when the path report came back showing adenomyosis. I did not have, and have never had, endometriosis. It's hard to say what my symptoms were because I assumed everything I felt was due to fibroids but I have learned through other posts on this wonderful website that adeno can cause spotting and painful cramps (pelvic pain?) during your period.

After getting home from the castle I did some research on adeno and this is the best information I came across: http://www.fibroids.net/html/adenomyosis.htm

Good luck to you

My pathlolgy from my TAH came back as me having Adenomyosis, no mention of Endo. My Drs and I always assumed I had Endo( always had all the symptoms) along with my Chronic Cervicitis, heavy bleeding, clotting, pain. Before my Hyst I bleed for 3 months straight and this was after had a D&C I was still bleeding as they rolled me into the ER. I'm still not convinced I have no Endo, from all I've read it is sometimes hard to see by the naked eye, there is white Endo as well and if they only biopsy certain areas it can be missed. Sometimes it is found post Hyst and if that happens it can be missed as well, it could be sewn up in the cuff area, incision, hiding in the culdesac. Some Drs remove healthy organs and leave the Endo behind hoping it will die off. I've always been told the only cure for Adeno is a Hyst but I would try other less invasive options 1st to try and alleve the symptoms,JMO. Here is some excellent links that hopefully will be of some help

http://www.endometriosistreatment.or...reprints1.html
http://www.pelvicpain.com/
https://www.hystersisters.com/forums/...?threadid=8782
http://www.obgyn.net/cpp/ATE_0900.htm#Lap
http://www.gynsecondopinion.com/OvarianCysts.shtml
https://www.hystersisters.com/vb2/sho...threadid=28124
http://www.drcook.com
https://www.hystersisters.com/vb2/sho...threadid=47930
http://www.scmc.org/endo/html/question1.html
http://www.obgyn.net/ah/ah.asp
http://www.uterinefibroids.org/
http://www.fibroidcorner.com/
http://www.endometrialablation.com/
http://www.newshe.com/
http://www.menopause.org/
http://www.obgyn.net/hysteroscopy/hysteroscopy.htm
http://www2.rpa.net/~lrandall/medlinks.html
http://www.womenssurgerygroup.com/tr...parelaparo.asp
http://www.centerforendo.com

Good Luck! Please keep us posted on how your doing....

I just thot about this...there is a forum here for sufferers of Endo/Adeno who have overcome the pan. There are some great stores and ideas there Here is the link:


https://www.hystersisters.com/vb2/for...s=&forumid=114

Thanks to all who have responded. Please if you have anymore suggestions, please let me know ) I appreciate everyone's input

Hi eabanddjb

I had endo and fibroids, then learned I also had adenomyosis after my hyst (found by pathogist). So I don't fit the profile of someone with adeno but not endo.

As far as symptoms, I had heavy bleeding and clotting, pelvic pain, lots of intestinal problems, constipation, etc. But with everything that was going on, who's to say what symptoms were caused by the endo, the adeno or the fibroids?

I also had lots of lower back pain and thankfully, that is gone now.

Adeno is hard to diagnose ... some say it can only be diagnosed after a hyst when they examine your uterus. I've also read that it can sometimes be diagnosed with an MRI. I've also read that adeno has no effective treatment, other than a hyst.

You're got lots of great links to check out, thanks to Sheri. Best of luck and keep us posted on what you decide to do.

Beth

Hi!

I had my TAH for fibroids and heavy, clotty bleeding. I had occasional painful period, but not the kind of pain I've read a lot of sisters going through. I was very anemic as my blood levels were very low.

I found out that I had adeno when I got the pathology report back (no endo).

Hope this helps!

s

I planned to have a myomectomy for fibroids, but my diagnosis after ultrasound was adeno. During my LSH, no endo was found, and the path report confirmed the adeno diagnosis. If there had been any endo, my surgeon would have removed it during the LSH. I'm happy with how it worked out after all - my recovery was very speedy.

I've heard that MRI or color ultrasound can be used to diagnose adeno, but my doc recognized the raindrop pattern characteristic of adeno on the regular black-and-white ultrasound.

I never had heavy periods but they sure were painful--I've read only about 65% experience that or breakthrough bleeding. I actually had pain pretty much constantly and lived on dilaudid a few times a day for several months. Best way to describe the pain is to imagine your uterus being wrung out like a washcloth. It felt crampy and twisty and very painful. Pain in the same area, low and just left of off center upon arousal and very painful orgasms. No endo was found during my TAH but I was being treated for it so I guess you can say that I had adenomyosis with and without endo. My dr says it can't be diagnosed with ultrasound and/or and MRI but I understand that topic is up for debate. She said the only way is a biopsy and even then what if you don't have it in that particular area tested. I have read that a pelvic exam could detect severe cases. The uterus will feel "boggy". I'd had several ultrasounds and pelvic exams over the past 7 months and actually had 3 drs tell me my uterus was very healthy. Ha ha ha how untrue that proved to be! Anyway, the point is I feel 100% pain relief and did the second I woke from surgery. No regrets. Good luck with your decisions. Hope this is helpful.

I had adenomyosis with mild endo. My only adeno symptoms were pelvic pain with periods, slightly painful intercourse, and painful orgasm--no heavy bleeding, no "boggy, uterus, and my doctor agreed to a hysterectomy as a kind of last resort crap-shoot. The pathology report came back showing adenomyosis! I think she was surprised, and she added painful orgasm to her list of symptoms for adeno, something she hadn't heard of before.

It does make sense to rule out other disorders, including gastrointestinal, before doing hysterectomy, though. It's major surgery, can have serious complications, and you can't put the uterus back if you change your mind.

Good luck with your decision!