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Adenomyosis and Hysterectomy Adenomyosis and Hysterectomy

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Unread 05-15-2003, 01:50 AM
Adenomyosis and Hysterectomy

A friend emailed me this site for some support, so here I am looking for answers like everyone else. I had a laporoscopy and hysteroscopy 2 weeks ago and was told everything looked normal and then I received a call from my Dr. 5 days following, that the biopsy resulted in a positive finding of adenomyosis. I am 36 years old and have two children from a prior marriage and wanted the option to have more. I have had two years of prolonged bleeding, trying over 7 different types of birth control to regulate the periods and pain and the last six months have been extremely painful and I hadn't stopped bleeding for over 30 days prior to the surgery. Since the surgery, I have stopped bleeding - (for how long - I don't know) and just have what I would consider a bloated, crampy feeling at all times! My Dr. has told me my only option is to live with the bleeding and pain and try to moderate it with medications and other options if I want to have more children or have the hysterectomy. I want a normal pain, bleed free life back. I am not in a position to consider more children and have opted for the hysterectomy. My appointment isn't until May 29th to find out more options and the specifics, so I am wondering if anyone can answer some questions? I have read that if I were to get pregnant it could be a high risk pregnancy! What does that mean? Would the fetus develop normally? Would it receive the blood supply needed to grow? Do I have a higher chance of miscarriage and could I carry it to term? When I have the hysterectomy, what parts are they going to remove? How do you know if it will be a vaginal hysterectomy? What questions do I need to ask the Dr. at my appointment? Thank you for your support!
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Unread 05-15-2003, 06:46 AM
Hi Abaker.

Welcome to Hystersisters. I am sorry that I can't answer all of your questions, but I know that you will find the answers that you seek here on this web site. Just remember, it is your body and you are the one that knows it best. You do not need to rush into any descision (sp?). Take the time you need to have your questions answered and make the right choice for you. This is a fabulous web site with lots of great people and lots of great information. They have helped me tremendously and I am sure they will be able to help you too. Welcome and rememeber you are not alone.

Unread 05-15-2003, 10:25 AM
Adenomyosis and Hysterectomy

Maybe I am misunderstanding.. but Im sure your doctor told you that you will not be able to get pregnant once you have a hysterectomy. At least I hope he did!

Whether abdominal or vaginal, depends on your condition and your doctor. From everything I have read, if you have adeno they usually do a TAH, but I have found that isnt always true. I have severe adeno (uterus enlarged to 18 weeks size) and my doctor will be doing a TVH and only switching to a TAH if absolutely necessary. So its really up to the doctor. If you have a preference, then you should let him know that. Some ladies even keep their cervix and only have a supracervical hysterectomy. This type of hyst can only be done abdominally. A total hysterectomy includes the cervix and uterus. If you have both of your tubes and ovaries removed then that is called a bilateral salpingo-oophorectomy or BSO as you will see on the site. RSO for right only and LSO for left only.

I carried a baby while having adeno. He is my 5th child and I had 4 normal pregnancies in the past. I was considered high risk the 5th time simply because there was an increased rate of my having complications during pregnancy and delivery. My pregnancy was very uneventful and progressed normally. They knew the baby was developing normally and looked to be healthy as well. However, I ended up delivering by emergency c section because the placenta began to pull away from the wall of the uterus at almost 37 weeks (placental abruption). Everything turned out fine other than a significant blood loss. Baby was fine and is a very healthy 3 yr old today with no problems whatsoever. Of course this is just my personal experience and not necessarily would be yours. This is actually when my adeno was found, although at the time the doctor felt it was not severe at all.

I am not a doctor nor have I had any training. But I do think its a good idea to write down all of these questions you have and ask your doctor at the appt. Every concern you have should be addressed by him/her.

Ask if it will be a TAH (total abdominal hysterectomy) or a TVH (total vaginal hysterectomy) and why he wishes to do it that way.

Ask if you will be keeping your ovaries, and if not.. why does he feel they need to go.

Ask all of the baby questions you asked previously in your post.

These are just a few suggestions. Im sure you can come up with a great list of your own. Good luck!
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Unread 05-15-2003, 11:56 AM
Re: Adenomyosis and Hysterectomy

I also was diagnosed with adeno and ovarian cysts over 2 yrs ago. I am only 28 and wanted to have more children (i have one 7yr old) So, I put off having the hyst done in order to try. Well, after having 2 miscarriages (one of which was with twins) in the last two years, I decided it was time to do it and get it over with. The doctor would never say that the adeno was the cause of the miscarriages. So I just have to guess or asssume that maybe it was and maybe it wasn't. This is my own personal experience, it may not happen to you. But, if I would have known then what I know and could have avoided all the emotional rollercoasters I've been on....I would have done it along time ago. I'm scheduled for a tah on 5/21/03 won't know if they'll take the ovaries until I wake up (that's kind of scary) Anyway, really consider the pros and cons of your decision and most of all, be at peace with whatever you decide. I also live with the pain and bleeding daily. I'm ready to get back to a normal life. I wish you all the best in whatever you decide. Feel free to IM me or e-mail me privately if you would like. My e-mail is [email protected] Good luck to you I'm sure you will make the right decision for YOU!!
Unread 05-15-2003, 04:59 PM
Adenomyosis and Hysterectomy

It's very unusual to have a definite diagnosis of adenomyosis before a hysterectomy, so as long as you have the condition it's nice that you know about it. As far as I know there is no real treatment for adenomyosis. The symptoms are treated and the condition usually gets worse and a hysterectomy is the only cure.

I think you should talk to your about what is meant by 'high risk' and get very clear about whether or not you would like to try to have another child before you have a hysterectomy. Once you have the surgery, of course there is no opportunity to change your mind.

I delayed my surgery for a long time and put up with a lot thinking that all would be fine after menopause. (I thought I was close but actually wasn't - I went through menopause quite late.) What I'm saying is that there are ways of dealing with the condition (mostly just gritting your teeth and working at keeping your iron levels up from what I could determine). I actually made it through menopause and ended up with surgery for a different reason.

Hope you are able to get clear on what's best for you.

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