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Adenomyosis Diagnosed.... Adenomyosis Diagnosed....

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  #1  
Unread 06-19-2008, 09:50 AM
Adenomyosis Diagnosed....

Hi, I am a new member here and am hoping I can find some support, advice, suggestions....something. I have been at a loss since getting diagnosed with Adenomyosis 3 weeks ago. Let me start from the begining. I am 26 years old, Married and Mother of 4 children. (boy/9;boy/girl twins/6;and an 11 month old boy). I started my period for the first time after not having it for a year and half (I was prego and then breastfeeding) in March. I bled heavy, very heavy large clots for 10 days and called the doc. She had me come in for a D&C right away. Had the D&C and the bleeding did not stop. It went to a "spotting" for a few days and then right back to the heavy bleeding and heavy clots. The doc scheduled a laporascopy and another D&C. Had the surgery and was told I have Adenomyosis. Went for my post check up a few days later STILL bleeding, I was experiencing my own horror movie...it is bad. SO, the doctor said the only effective treatment is a hysterectomy. She said drug and other methods are none effective or only effective for a very short time. I said I wasnt sure at 26 years old that I didnt want anymore kids...I thought I was done, but to be told something like this makes me want more kids, i thinks its the whole forbidden fruit thing. Anyways the doc had me taking 4 birth control pills each day. Her concern was to stop the bleeding so I didnt get to anemic.I was to take 4 for the first few days, then take 3 and then 2 and then one...well as soon as I tried to only take 3 pills a day the bleedings and PAIN came back...so I kept taking 4 pills because at least the bleeding slowed to a pace where I can use a tampon for more then 3 seconds. I go back on the 27th of this month to follow up. I am still bleeding and the pain is really bad. Does anyone know anything about this adenomyosis?? or any alternative helpful treatments besides a hysterectomy??
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  #2  
Unread 06-19-2008, 01:17 PM
Adenomyosis Diagnosed....

The only cure for adeno is a hyst, unfortunately. I had an ablation that didn't work, and now they've figured out I have adeno. BC pills have not stopped my bleed, and a depo-provera shot had absolutely no effect at all.

It is a VERY difficult decision to make; I was 45 when I had my ablation and giving up my fertility was the hardest part of that struggle, even at that advanced age!! My last child was born when I was 41, so I didn't feel like I was done.

But if you don't do something, you WILL bleed to death, slowly but surely, over the rest of your life. It will be miserable and you will be tired all the time. It will get worse and then because of your anemia, you will be run down and susceptible to lots of other nasty things.

Talk it over with the doctor, talk to friends, then make your decision. I wish you the absolute BEST of luck!!
  #3  
Unread 06-19-2008, 01:36 PM
Adenomyosis Diagnosed....

Thank you for your reply. This has been one of the toughest decisions ever. I always thought I was given kids at such a young age for a reason because had I been in the situation at 26 years with no kids, I dont know how I would have managed. They are my life. I guess that is why its so hard to think of not having anymore. But as my friends have put it....I have to be here and be strong for the 4 that I do have. Its emotionally draining. My husband (who is actually the step father to my three oldest and biological to my youngest) has been amazing! He said he would rather have me here and heathly then have any more kids...he even suggested adoption. I have my mind full of stuff right now and am praying that God gives me my answer plain and clear...
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  #4  
Unread 06-19-2008, 06:54 PM
Adenomyosis Diagnosed....

I know what you mean about the fertility. I think I had mine early for that same reason. I had an unplanned teenage pregnancy and then another one 3 years later. I have no regrets about having them early. I had an ablation and a tubal done for the same symptoms you have. Unfortunately I'm having pain now on top of the ablation not being as successful as I was told. I'm still spotting ( theoretically I'm on period day # 11 ) and it was 8 months ago that I had the procedure. I'm wondering if I too may have adeno. Good luck w/ your decision.
  #5  
Unread 06-20-2008, 02:19 PM
Adenomyosis Diagnosed....

  Quote:
Originally Posted by cbarr598
Hi, I am a new member here and am hoping I can find some support, advice, suggestions....something. I have been at a loss since getting diagnosed with Adenomyosis 3 weeks ago. Let me start from the begining. I am 26 years old, Married and Mother of 4 children. (boy/9;boy/girl twins/6;and an 11 month old boy). I started my period for the first time after not having it for a year and half (I was prego and then breastfeeding) in March. I bled heavy, very heavy large clots for 10 days and called the doc. She had me come in for a D&C right away. Had the D&C and the bleeding did not stop. It went to a "spotting" for a few days and then right back to the heavy bleeding and heavy clots. The doc scheduled a laporascopy and another D&C. Had the surgery and was told I have Adenomyosis. Went for my post check up a few days later STILL bleeding, I was experiencing my own horror movie...it is bad. SO, the doctor said the only effective treatment is a hysterectomy. She said drug and other methods are none effective or only effective for a very short time. I said I wasnt sure at 26 years old that I didnt want anymore kids...I thought I was done, but to be told something like this makes me want more kids, i thinks its the whole forbidden fruit thing. Anyways the doc had me taking 4 birth control pills each day. Her concern was to stop the bleeding so I didnt get to anemic.I was to take 4 for the first few days, then take 3 and then 2 and then one...well as soon as I tried to only take 3 pills a day the bleedings and PAIN came back...so I kept taking 4 pills because at least the bleeding slowed to a pace where I can use a tampon for more then 3 seconds. I go back on the 27th of this month to follow up. I am still bleeding and the pain is really bad. Does anyone know anything about this adenomyosis?? or any alternative helpful treatments besides a hysterectomy??

Hello,
I too have adenomyosis and am scheduled for a vaginal hysterectomy on July 25th. I am 38 and have three beautiful daughters. I have finally come to terms with the fact that I will not have anymore children. The issues I am having with the adenomyosis have convinced me to have this done. I know you are young but you do have 4 wonderful kids and your friend is correct by saying that you need to be here for them. Unfortunately, the only real cure for it is the hyst. I'm here for you to talk if you need. good luck with your decision
  #6  
Unread 06-20-2008, 09:44 PM
Adenomyosis Diagnosed....

It is a hard decsion! the only cure for adenomyosis is hyst but you can try hormones and other pills to control it, megace worked beter than the others for me. lots of luck it is a hard disease to have.
hugs
lisa
  #7  
Unread 06-20-2008, 09:55 PM
Adenomyosis Diagnosed....

Another option you can speak to your doctor about is removing your ovaries rather than the uterus, this can resolve adeno as well, though your fertility will still be compromised. This procedure will put you into menopause but is does not produce some of the same complications a hysterectomy does.
  #8  
Unread 06-20-2008, 10:10 PM
Adenomyosis Diagnosed....

Hi,
I'm sorry that you're having to make this decision at such a young age! I'm glad though that you have such a supportive husband & 4 children! My DH & I stopped at 3 kids as we wanted to be able to do everything we could financially for them. Otherwise, I probably would've had 6-10 of them. I love kids, loved being pregnant & nursing, & had very easy pregnancies. On the other hand, I've had horrible periods from day 1. So, for me, I knocked up how poorly I felt & the most outrageous periods & cramps to "aging" even though I was only 42 at the time of my hyst.

From everything I've read, your doctor nailed everything about adeno. & its treatment on the head. I hear of others who've tried alternative methods & eventually still end up with the hyst. I've also read some women saying that their pain got worse after certain treatments. At this point in medical advances, I've heard that nothing but a hysterectomy will cure adenomyosis.

For me, my hyst. gave me my life back. No more chronic pelvic pain, heavy periods, clots, over-the-top cramps, being tired all the time... It had gotten to the point that a good BM moving behind my uterus could double me over & I have a high pain tolerance (ie - all 3 kids delivered au natural - no meds). I think that when we deal with something on a daily basis with a gradual deterioration, we don't realize how bad our quality of life has suffered. That was the case for me. At about the 8 week post-op mark, I came to that realization. I felt & still do feel 10 years younger! I got my life back.

I didn't jump at the hyst. as my first option. I actually went through different testing that somehow led to another test or eliminated an alternative treatment for 4 months before I decided I was done. (The doc telling me that she couldn't guarantee that the ablation would take care of the pain was the ultimate decider for me.)

What you do needs to be your decision. It is your body, mind, & heart. Ultimately, you will need the hyst. to get rid of the adeno. I agree with your loved ones & the ladies here that as much as you might like to have more kids, you need to be here & healthy for the ones you have. They deserve to have 100% of their mommy - not one being taken hostage by her uterus. You'll know when the time is right. I wish you the best in making your decision! If you have questions, I'm here to help.

Blessings,
Sue

P.S. I found sm's thought about getting run down & having a problem fighting "things" as a secondary effect of the adeno. interesting. I fought one respiratory bug after another for 1 1/2 years prior to hyst. Just past the one year mark, I was diagnosed with chronic sinusitis which doc said was making me an open target for the other infections. Hmmm.... I was definitely run down & tired all the time (from the adeno symptoms??????) before the sinus stuff kicked in. This could be purely speculative but it is interesting.
  #9  
Unread 06-22-2008, 07:32 AM
Adenomyosis Diagnosed....

Thank you very much for your support and sharing your own stories. I actually called the doctor on Thursday and made my appointment for the following day because my bleeding was bad and I was very very dizzy. She had me come in and we talked about looking into every other "possible" condition that I might have, like a blood clotting disease. She sent me to the hospital for blood work. She said she wanted to get me an IUD and Progesterone. She said we could only use the progesteron for a short time because I had PPD after the birth of my twins and I guess the hormone could cause severe depression. She said after the blood work comes back and we have the information we need on some other tests that we would decide what to do next. She said because I am so young that its wise just to keep ruling things out before we get to the point of a Hyst. SHe said she wanted everything done with in the next two weeks so we can make a plan of action. She also told me that I had to stop taking 2-3 birth control pills each day because I am asking for a major blood clot...so I am back to one a day. I am still bleeding but am able to keep a tampon in. I have only had 5 days of relief since April 1st. I am tired and its really wearing on me physically, emotionally. Wow....
  #10  
Unread 06-22-2008, 08:29 PM
Adenomyosis Diagnosed....

  Quote:
Originally Posted by katgurl66
Another option you can speak to your doctor about is removing your ovaries rather than the uterus, this can resolve adeno as well, though your fertility will still be compromised. This procedure will put you into menopause but is does not produce some of the same complications a hysterectomy does.

Does this stop monthly bleeding? I would be willing to try that if it stopped it. Funny I never heard of this before.
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