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25 yo w/ Adenomyosis 25 yo w/ Adenomyosis

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  #1  
Unread 08-24-2004, 07:53 AM
25 yo w/ Adenomyosis

Hello! I am new to this site and although, because of my age, a hysterectomy is currently not an option, this place so far has had more information on my disease than any other website I've visited. I am 25 years old and have what the doctor describes as "probably" adenomyosis. I have had increasingly bad pain over the past few years, leading up to fainting spells and being unable to leave my bed because of the pain. I bleed almost constantly and when its heavy, I go thru a tampon in less than 2 hours. I have had the routine ultrasound (internal/external), a laparoscopy, hysteroscopy and D&C. In the past 6 months, I've experienced "hormonal" changes; hot flashes, night sweats, excessive sweating, severe moodiness, dizziness, as well as a few others. Being someone who previously couldn't break a sweat running on a treadmill, I found this all very abnormal. I have had my thyroid tested, to rule that out as a factor. Lately, all of this has been getting to me and I've been incredibly depressed about it. My doctor suggested only Lupron as an option, but I'm not willing to try that because of the harsh side effects as well as the reduction of bone density. I'm seeking another opinion to see if there are any other options. I would love to just get a hysterectomy so I can go back to leading a normal, active, healthy, young life. Unfortunately, I have no children, and I don't forsee having any children until maybe 5 years from now. Being able to have a family is very important to me. I miss being young and not being in pain and tired all of the time. I can't go out with my friends anymore because I'm always too exhausted or hurting too much. I don't exercise anymore because it is too painful to move around a lot. I get teary just about anytime I see a pregnant woman or a baby. I feel like I'm going through menopause before my mother even does. If this new doctor suggests the same thing everyone else has suggested; Lupron, I think I might investigate alternative medicine, because I desperately need relief. I can't imagine going thru even the next year feeling like this. Has anyone here experienced adenomyosis before they had children or when they were "too young" for a hysterectomy? Are there any options out there that wouldn't jeapordize my ability to have children? And if anyone knows of any "alternative" medicine that they might suggest, let me know.
  #2  
Unread 08-24-2004, 03:34 PM
25 yo w/ Adenomyosis

Hi ((Xia)) & welcome
I'm sorry it is for your ongoing problems with this condition I had my surgery when I was 30 & Adeno was found during it, my Dr had suspected it prior to the surgery.
Technology has made many advances in treating conditions that had no treatments previously! Some women here have underwent some alternative treatments for Adeno...
hopefully one of them will come along & share some more helpful info with you!
I also wanted to share the following link to our resources directory...this part contains some excellent info on Adeno:

http://www.hystersisters.com/vb2/lin...n=browse&cid=6

This one is really good:
http://www.hystersisters.com/vb2/lin...on=jump&lid=29

Sorry I couldnt be of some more specific help....

I do hope you will be able to find some answers & most of all relief to your ongoing pain Pls keep
us posted on how things are going for you...(((hugs)))
  #3  
Unread 08-25-2004, 09:16 PM
25 yo w/ Adenomyosis

Dear Xia,

I sure can't guarantee this will work for you, and it isn't a cure, but another option you might want to try is the Mirena IUD.

The Mirena IUD is fairly new in the USA(2001 and Europe 1990). Since the progestin dosage is in lower amounts than that of bcps the Mirena progestins don't tend to cause as much side effects as people tend to hear about with progestins and it's effects are more direct considering it's location. 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 (if there isnt too much distortion), cases of excessive bleeding where the cause has been elusive, endometriosis, and adenomyosis.
Mine is doing 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.

http://www.womens-health.co.uk/mirena.htm
http://www.biomedcentral.com/1534-5874/2/417 (Mirena is a levonorgestrol IUS/Intrauterine System)
http://www.medforum.nl/gynfo/leading_article8.htm

Good luck.

Pat
  #4  
Unread 08-27-2004, 07:05 AM
25 yo w/ Adenomyosis

Xia,

I'm sorry that I don't have any answers to your questions. I'm curious, though, how you know you have adenomyosis. Like you, I have not had children. I'm 28. I was diagnosed with endometriosis 5 years ago. During my last surgery, my doc commented that it looked (based on the shape of my uterus) that I might have adeno. But once he realized I've never had children, he seemed to dismiss the idea. I know many resources suggest that it occurs mostly in older women who have had children and I certainly don't want him to dismiss this just because I haven't. I am facing the hysterectomy decision and this question is haunting me.

I hope you have found some answers and good resources through this site. It's helped me tremendously but there is still so much to consider! Good luck to you and remember that you need to do what is best for YOU.

Hugs,
Heather
  #5  
Unread 08-27-2004, 10:58 AM
25 yo w/ Adenomyosis

From my understanding, without removing the uterus through a hysterectomy, they cannot officially "diagnose" me w/ adenomyosis. So the way that it is worded it "a strong clinical suspicion of adenomyosis". I have never been pregnant, and that didn't influece their diagnosis at all. They believe it to be adenomyosis because all of my pain radiates from my uterus. During the laparoscopy, they poked at the uterus and noted that it was extremely swollen and spongy, definately far from healthy. I had little if any evidence of actual endometriosis. The only concern currently is that the only treatment for adenomyosis is a hysterectomy and I terribly want children. I don't forsee being "ready" for children for about 3-5 years and so I'm going to be sent to a pain management fellow to see if I can at least control the pain until I can get a hysterectomy.
  #6  
Unread 08-27-2004, 11:05 AM
25 yo w/ Adenomyosis

Just got back from my doc appt. today and she said she thinks I have adenomyosis. I hadn't even heard of it until I got on this site.

I had a vaginal ultrasound and I'll know on Monday what we decide to do. I'm pretty sure the hysterectomy is in my future.
  #7  
Unread 08-27-2004, 11:14 AM
25 yo w/ Adenomyosis

I saw my doctor the other day and basically we're going to try and manage my pain (if we can) until I decide to have the hysterectomy. I really want children and it breaks my heart to think I might just give up and not be able to have them. If there are any new medical breakthrus or anything I find out when I see the new doctor, I will certainly post them to the board.
  #8  
Unread 08-27-2004, 12:30 PM
25 yo w/ Adenomyosis

Xia,

I feel so bad for you -- I, too, have suspected adeno. I had an endometrial ablation done in Dec 2002 and it gave me some relief from the bleeding until about three months ago. I was still having painful periods and they are getting worse, as is the bleeding again. I will be having a hyst sometime in Dec 2004.

Not to send you off this site -- which is a wonderful source of information and support -- but you might want to look into the yahoo group for adenomyosis:
http://health.groups.yahoo.com/group/adenomyosis/
There's a lot of discussion there about treatments, etc. You are not the only younger woman with adeno and not the only one to have it before having children.

Please take care of yourself. The heavy bleeding can really take its toll on your body and it sounds like you may be anemic. Before I was diagnosed, I ended up in the ER for my heavy bleeding and received four units of blood. Don't let your body get into that situation.

lisa
  #9  
Unread 08-29-2004, 07:43 PM
Me Too

My doctor told me at 19 that I had the worst case he had ever heard of. You are not alone. I am 32 and now finally need to have a hyster. I have done the Lupron twice. It was a really nice break from the pain. I have quite a long medical history and would share it with you if you are interested. Did you know that they now have birthcontrol pills that you only have to have a period once every three or four months. Might be something to look into.
Christina (imzzealous)
  #10  
Unread 08-29-2004, 09:28 PM
25 y/o with Adenomyosis

Hello! I know exactly what you are going through. I just had my TAH 13 months ago sue to adenomyosis, endometriosis, and bicornuate uterus. I was only 28 years old when I had my surgery. I, like you, had had all of the diagnostic surgeries and I did do the 6 month course of Lupron. It was a living nightmare!! I had hot flashes, my hair thinned out, I was mean and hateful all of the time, and very depressed. The sad part is, the Lupron did not help me at all. I did the Lupron about 4 years before my surgery and am know finding out that I disc problems in my back possible caused by the Lupro. I too was bleeding constantly, unless I was taking 5 birth control pills a day. I do not have any children so I know how your heart breaks on that subject. I still have good days and bad days, but my husband of 5 years is very supportive. I hope this has helped you to know that you are not alone out there. I felt like nobody understood what I was going through. Please know that I am here to answer any questions I can if it will help you!!

Good Luck!!
nursela
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