ademyosis

I have recently seen my OBGYN and after a lap. she thinks this is what I may have, no further info was given. Anyone know anything about Ademyosis or available treatment?? Looking for answers..

I had endometriosis and eventually it advanced to adenomyosis .

Endo is the lining of the womb spread to the outside of the womb in the abdominal cavity . monthly these off patches respond to the menses hormones the way the lining meant to be shed does .

This causes extreme pain for most women.

Adenomyosis is basically the endo in the meat of the womb . I have both .

My whole womb was enlarged .

After 20over years of pain I had enough . I just had it removed at the end of Jan 04 after a collapse .

During this period I had in trteatment .. two laparascopies , two courses of hormone treatment .

Danazol :

With danazol I took it in tablet form and I have since forgotten the dosage .

I took it also for the same reason and for 6 months .

I had acne , and spotted . But that was more bearable than the heavy flow I normally had .

Im not too clear on how it works ( its been ages ) but I think it surpresses the female hormones and thus menses ceases . ( I may be wrong )

Lucrin ( lupron in the USA i believe )

Prescribed as a treatment for endometriosis and adenomyosis .

The drug is a synthetic hormone .I believe that it stops females producing oestrogen and sets them into temporary menopause .

Its taken as a jab under the skin .

In my 30s ,I had mine twice at 3 mth intervals to stop my menses .

Effects on me : hot flushes ... a hungry phrase after each jab . I jst got hungry and wanted snacks all the time for period .I had severe migriane ( sp ?my brain is tired right now )

But it was easier on me than danazol which I took orally for a period in my twenties .

I hope this helps

mei

I have had two laps so far. The first one showed endo only (at least that's all he told me about). The second one, with a new doc 11 months later showed advanced endo plus adeno. I have tried EVERYTHING. Continuous birth control pills, lupron, but nothing helped. The only real cure for adeno is a hyst, which is what brought me here - because I'm tired of the constant pain. Unfortunately, there is no real cure for endo, but the hyst should help.

Adeno can cause a lot of pain for some people (like lucky me) or nothing at all.

Run a search on the internet and you'll find all sorts of stuff.

Best,
Lori

I am 34 and have been diagnosed with adenomyosis. I searched the web medical sites to better understand what it was. I found out that it can be caused by a trauma to the uterus such as labor or delivery. Basically it is a tear or injury to the uterus that tries to mend but instead causes an ever increasing amount of cells, and it does not stop producing cells. My doc. said that it could clear up during menopause, but I have quiet a few years to go until then. So I figure since I measured 16cm during my ultrasound, and my bladder hates my uterus right now, why not opt for surgery?! I really feel I could benefit from it. Hopefully get back to life. Hope this tid bit of info helps!

I have been diagnosed with adneomyosis for quite some time. There are varying symptoms of which you do not notice anything. It is thickening of the uterine wall, a benign condition but it can cause heavy bleeding and pain. My uterus is now the size of a twelve week uterus and very globby (another symptom). I was put on lupron shots for three months to decrease the size of the uterus and go for a sonogram this Wed. and back to the Dr. for the results next Thursday. I am having pain in my legs and hips which is another symptom. I believe I will be having a hysterectomy as I feel the symtoms are getting worse and not better. It is the only treatment for this disease. I hope this has helped. Please let me know how you are coming along.

Hormone Hazel.

I too have pain in my hip (left side only) and also pain that radiates down to my thighs, usually when I sit. I wasn't sure if it was related to adeno or not but I found it interesting that you said that. Also, do you find that your uterus puts a lot of pressure on your bladder, causing you to pee all the time? And it kind of hurts the uterus when I have to pee. VERY uncomfortable~

Do you have that too? Anyone?

Lori

I sure do, alot of pressure and the bathroom at work is downstairs, needless to say I make quite a few trips and not always getting there on time. I hate that. I try to drink alot as I am going to LA Weight Loss so that doesnt help either. I am gaining weight like crazy and had lost 30 pounds. The diet really works and I wasn't hungry until the lupron. I am so ready to make the decision but know I will be stressed once I do. Do you feel that way also. Hormone Hazel

Just had a TAH for suspected adeno, and pathology came back adeno and fibroids. My biggest problem was the heavy bleeding and clotting which was making me fatigued. I did have discomfort up to my belly button and down to the top of my thighs and in my back. I did not know that my uterus was what was causing this until I did research. I am only 6 days post-op so I dont know if it's all gone since I still have discomfort from the surgery, so I am waiting on that one, and looking forward to feeling better.
chele

I was diagnosed with adenomyosis about 3 years ago. I had an endometrial ablation and that actually worked for awhile--my periods went from being really heavy and long to about a week long and light. Then all the sudden about 2 years later it got bad again. Basically I had my period all the time in varying degrees of heaviness. I went on Megace, which is progesterone and took it every day. That stopped the bleeding, but I gained weight and became very moody--sort of like I had PMS all the time.

When I went back to the dr in January she said that the ablation technology had really progressed and did I want to give it another shot? I was all prepared to do that and went in for pre-op ultrasound only to find out the adnomyosis had progressed so much that chances were slim the ablation would work. I thought about it for 24 hours and decided I was through messing around and was just going to have a TVH. Just 10 more days to go...

I'm 35--when I had the first ablation I knew there would be no chance of ever having another child. With some difficulty, I accepted that because I already was blessed with 2. So fortunately I'm not having to deal with that issue this go round. I feel like my quality of life is imparied. I'm tired of bleeding all the time or taking hormones and being a chubby lunatic! But I still am very nervous...

My thoughts are with all of you who are suffering from this. Unlike endometriosis, most people have never heard of adenomyosis. I certainly hadn't.

Hi Sacredfem,
Ihad never heard of adeno either, not a clue as to what it was. But like you I'm tired of bleeding all the time and refuse to take progesterone anymore. I feel worse when I take it. Ohh! and b.c. pills forget that too! Been there done that. It stinks that being only 34 I feel close to fifty something not that that is bad but could I just have a normal monthly like my friends? I hate planning everything, including vacations and romantic rendevous with hubby around aunt flo. Can I just have me back? Sorry just needed to vent, sometimes get carried away. Dh tries but doesn't fully understand. He really had a tough time when I had 15day periods and only ten dry days in between. HAHA poor baby! Get over it I said I'm the one bleeding here it's no cake walk foe me either. He does support my decision for sugery and has already planned leave so he can be at my beckoning call. I'm truly lucky, no wait BLESSED. Yes BLESSED! Thank you