My story

Hi everyone. After searching the internet I came upon this site and I must say I am impressed. I am very confused about what is going on with my body and would really appreciate any help/info/support out there.

I am 32 years old and have 2 children. I started my period when I was 11. I have always had severe cramps. I remember being a teenager and having so much pain that I would get sick. My doctor told me that as I got older my hormones would balance out and the pain would get better. When I was 16 I was told I had PID( I was having severe right sided pain). At 19 I had a tubal pregnancy on my right side and had surgery. Due to my age my tube was not removed. At 21 I had another tubal preganacy on the same side. This time a portion of my tube was removed. I got pregnant with my son within months after surgery. I continued to complain about the pain and heavy bleeding I was experiencing every month to no avail. I was told so many things, the most notable was that it was all due to having a baby. I had another baby in 1996. Soon after I was back to the doctor. Again very heavy bleeding and terrible pain. One doctor had the nerve to ask me what I preferred he help me with, the pain or the bleeding. I told him both and he said sorry can't help you. He made me choose. Of course I told him the pain. He never did anything to really help. I had a tubal ligation in 1997. At that time the doctor who did it said I had a perfectly healthy reproductive system. For the past 7 years I've been to countless doctors who would never take me seriously. I've finally seemed to find one who is willing to work with me. She sent me for an MRI and it came back that I have adenomyosis and that both of my ovaries are multicystic, the right one more than the left. I've tried birth control pills but I have cyclic migraine headaches which became worse with the pill. I hate to trade one pain for another so they are no option. My doctor said the only real cure for adenomyosis is hysterectomy. I'm not interested in having any more children but the thought of having part of my body permanently removed scares me some. I've researched some other alternatives, mostly hormone therapy but that scares me too. Any suggestions?

Thanks so much!

There are probably others who can speak more intelligently about this, but I'll share what I've learned in the past few weeks.

There are very few references to anything other than a hysterectomy for adeno. Hormones don't seem to help, and I may have even seen one reference that they might actually make things worse (but don't quote me - can anyone confirm or deny this?).

I have seen a couple of sites that mention that if the adeno isn't very deep, an endometrial ablation and removal of the adeno can help. I even got an email response from Dr. West stating: "Adenomyosis can often be removed (like a fibroid)."

I don't know how successful or long-term these treatments are, but maybe you can do some research. I've got a whole load of links on fibroids, adeno, endo, and hydronephrosis as it relates to endo and just in general.

If you want, I'll post them.

Esme

Esme,
Any links with info you could give me would be great. I see my doctor on the 20th and I have to have made a decision by then as to what I want to do. Originally I was sceduled for a laporoscopy for the 25th, but my dr. said if my MRI comfirmed adeno then we'd discuss a hysterectomy instead of the lap.Thursday is my pre-op and I need to be able to tell her then whether or not I want to have the hysterectomy. If I decide to do it then I'll have it done on the 25th instead of the lap.

Everything I've seen so far as well has basically said a hysterectomy is the only real treatment for adeno, but I thought maybe someone may know of another option that I could talk to my doctor about.

Thank you for your response

Hi there
I too have adenomyosis along with severe endo and adhesions. Yes, you are correct in that the only true "cure" for adenomyosis is a hysterectomy. This will definitely stop your bleeding and the pain associated with adeno. However....you probably don't know whether or not you have endometriosis. This adds a whole new dimension to the picture.

If you did have endo, and had your uterus removed....your endo would still be there. If you keep your ovaries, then the endo can continue to grow. The only way to diagnose endo is through a laparoscopy. Or, you can discuss with your doc that if he does see endo during the hyst, that you make sure he will remove all visible endo lesions

If you are in any way unsure about this, then please seek another opinion.

From my research, I have found that Lupron shots can reduce the symptoms of adeno for a while. I believe they can be used for up to 6 months. This could buy you some time to become more comfortable with your decision for a hyst.

I wish you luck with all of your decisions.
s
Tam

Adenomyosis Explanation:
http://www.alternativesurgery.com/ed...denomyosis.php

eMedicine.com article on Adenomyosis:
http://www.emedicine.com/radio/topic737.htm

VERY graphic pics of endo, adeno, fibroids (have to go forward and back to see all the pics) - do not look at if you are squeamish:
http://medlib.med.utah.edu/WebPath/FEMHTML/FEM028.html

Technical article on diagnosing adenomyosis - shorter and less detailed than the previous one - a quicker and easier read:
http://articles.findarticles.com/p/a...36/ai_94158749

There was one more, but I forgot to bookmark it - darn! Hope they help . . .

Thank you so much for the links. I've looked at them. Very informative.
Getting a second opinion would be nice but since my husband is military I'd only be allowed to see a doctor in the same clinic anyway. I'm prettysure I'll go through with the hysterectomy. I just want the pain to stop. It's been non-stop for months now. I was mainly wondering if anyone knew of any other treatment for adeno so I could discuss it with my doctor. I'd hate to have surgery only to find out afterwards I had other options. It seems there really are no other alternatives. I'm just praying I don't have endo as well. Well, one step at a time I guess.
Thank you so much for your responses.

Dear Mspnnywnkle,

One alternative which you might consider is the Mirena IUD, a hormonal IUD. I don't know if it will provide you with enough relief, but it is an option. Though not a cure, I guess it's possible it could get you to menopause when your hormones subside.

http://www.biomedcentral.com/1534-5874/2/417 (It is an LNG-IUS IUD meaning levonorgestrel intrauterine system)
http://www.womens-health.co.uk/mirena.htm

It can also be tried after resection/ablation

http://www.ingenta.com/isis/searchi...000004&index=17

The Mirena IUD is fairly new in the USA and contains progestins only. The progestin is in lower amounts than that of birth control pills and therefore doesnt tend to cause as much side effects as people tend to hear about with progestins (though I didnt have them) and it's effects are more direct considering it's location. It usually decreases the monthly flow and a good number of women dont even get a period with it. It is good for five years. I have one.

Though it's primary use is as a form of birth control, it is used in cases of endometrial hyperplasia (sometimes even in low stage cancer), fibroids (typically for smaller or medium sized ones if there isnt too much distortion), cases of excessive bleeding where the cause has been elusive, endometriosis, and adenomyosis. I hear it can alleviate some forms of cramping.

Mine is doing just fine now (I have it to prevent recurrence of hyperplasia) but I will admit that the placement is not fun, and it seems that good placement is somewhat a matter of luck (having had 2 placed in the past) or ongoing cramping may occur. Mine has been so comfortable that I've had moments of doubt that it was there.

Good luck to you.

Pat