Options for adenomyosis/endometriosis?? Crying here...

Hi All,

I'm new here and I'm deciding what to do about adeno/endo I'm married to a wonderfully supportive husband right now named Jeff. We have adopted 3 kids from Korea. I'm a SAHM to them.

I was diagnosed with endometriosis (stage 3 in January 2000 and stage 4 in August 2002). My cramping with my periods are worse, my flow of my period is heavy even with my legs elevated. I have tailbone pain, pain with urination that is not associated with having a UTI, painful sex (but I've always had that) and more.

I sent my medical records to an endo excision specialist and heard back from him yesterday. He says that based on my symptoms it is suggestive that I have adenomyosis.

Due to my left ovary's issues of repeat endometriomas, repeat adhering down to the side wall and more, the specialist isn't sure what he'll find when I have the surgery. He states that there may not be any healthy tissue left with that ovary after he frees it up.

As of my last surgery in 2002, my right ovary is okay...I don't know about now though.

I have run the gambit of emotions: anger, sadness, frustration and depression so far since yesterday. Right now I just want to hide away from the majority of the world and sit down and cry for awhile since I was never able to get pregnant. I have the same emotions right now that I had when I was ttcing.

I don't know what to do or what types of symptoms to expect if I do have a hyst. All I know is that I don't like the pain that I have been in, I want to be a better mother to my kids, and I want to be a better wife to my husband.

What are my options besides a hyst for the adenomyosis at this point? What are the symptoms of adeno? What are the ramifications of having a hyst? What are the ramifications of having a hyst with one ovary taken out?

I wish that I had the magic crystal ball to see the future to see what path I need to take or have that magic wand waved over my abdomen.

Been crying here alot in NYS,

Jen

Hi Jen and

Wow, it sounds like you have been through a lot with gynecological issues, but that you have a terrific family.

I had my hysterectomy for different issues so that I don't have too much I can share from my own experience, but I want you to know that there will be others who come along who will help.

While post-hysterectomy life can pose some challenges, for the majority of patients their quality of life improves. Of course, as you point out, there is no way to know this for sure ahead of time.

If you keep an ovary, it "should" continue to provide you vital hormones until the age you would reach natural menopause. But if it doesn't, medical help is available for that.

I'm sending many s your way,

My understanding is that for adenomysosis, hysterectomy is it! It's like endometriosis tissue in the walls of the uterus. While I'm sorry to say that (and I am much older -- 48), I have never had children and since having my hysterectomy back in September, I feel better than I have since I was 11 years old!! My girlie organs always gave me a fit! I went ahead and had the ovaries removed as well. My moods have stabilized -- no crying and monthly depression, no more hormonal headaches, no more PAIN!! I was living on narcotics for a few months prior to surgery. I didn't have time to worry, I just needed relief!
If you can find a good laparoscopic surgeon (who also specializes in excision) -- sounds like you have, I would say a prayer and put it in his hands. You deserve to feel good -- once you feel good, you can enjoy your wonderful family.
You are in my prayers. I know what you're going through (painwise). Take care of yourself
All the best
PS -- just a plus, but sex is great!

Jen,

I am so glad you are blessed with a supportive husband and great kids. I am reading in your post that you so want to feel better for them and for you. That's how I felt, too.

As someone who had adeno and endo and is now symptom free (for several years), I feel incredibly blessed. Reading your post brought a lot back for me. Sometimes my hubby or I think "what if" about more children and then I realize that just wasn't God's plan for us.

I am so glad to see you have an endo specialist involved. Have you actually been to see the specialist? Many of your questions should be answered by the specialist. They are great questions and especially when dealing with something as complex as adeno and endo the answers are specific to you.

I'm for your healing and for your specialist to partner with you to get you pain free and living a better quality of life!

Jen:

I have adeno/small fibroids. I'm older than you, 47. Have a great supportive hubby and two sons. These last two years have been really bad with pain. I went to the doc last week and asked for the hyster. She wants me to try an IUD. She says that it will thin the lining of the uterus and help with the adeno. I don't know if this would be an option for you with the endo, but you could ask your doc. I will be getting the IUD "installed" next month with my period. I will let you know how that goes and if I see good things from it. If not, we're gonna give it about 3-4 months and then go for the hyster. I am optimistic that this might work and there are some other benefits - 20% of the women don't get a period at all after 1 year; 90% have lighter flow after only a few months. My fibroids are small so they are not really causing all the pain like the adeno.

Anyhow, feel better - I know how you feel - I act so grumpy when the adeno is bothering me and my hub and kids are really good with me and don't get too mad at me! I even realize what a monster I'm being, but really can't stop until I'm past the pain.

Again, I'll let you now what happens with the IUD. If it works for me, I hope it can be an alternative to surgery for you. Take care and God Bless. Lisa