Devastated- sort of WR

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newsjunkie Posts : 3,417 Registered: 3/30/06
Devastated- sort of WR
Posted: Jun 29, 2006 12:15 PM

I have been having severe abdominal pain since September and have had tons of different diagnosis's- Crohn's, Irritable Bowel Syndrome, etc.  I FINALLY found a surgeon who was convinced it was endometriosis and I had surgery last week to remove it.  It turned out not to be endo and is probably something similar called adenomyosis.  Treatment is limited- there is a medicaton you can take for a max of 6 months that mimics menopause and the side effects are awful (like PMS times 100).  After the 6 months, though, the only treatment option is a hysterectomy.

I never wanted kids until I met my FH.  Once I fell in love I couldn't wait to marry him and have kids with him in a few years.  Now it looks like the only way I can conceive, carry, and deliver a baby we would have to do it in the next year- and we are not even close to being ready to be parents. 

I just can't believe I am hearing this news only months before my wedding (in October).  I am just devastated.  Yes, there is adoption and possibly other options but it's not the same.  I know there is no advice anyone can give me, I just wanted to vent.  Not frustration this time, just incredible sadness.

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NatSeptBride Posts : 888 Registered: 3/28/06
Re: Devastated- sort of WR
Posted: Jun 29, 2006 12:26 PM Go to message in response to: newsjunkie

I'm so sorry!  I worked with a girl who was told she had a bladder disease for about 5 years, and it turned out it was endometriosis.  There is nothing I can even say, I wish you the best, and you are more than welcome to use my cyber shoulder to cry on. 

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 12:31 PM Go to message in response to: newsjunkie

I'm so sorry to hear this news! It often seems to me like those who want kids the most, are those who can't have them. In our case, we're probably opting to not have kids (FH can't) or possibly adopt an older child in several yrs, b/c I too couldn't IMAGINE jumping into parenthood before my 30s.

I realize it may not comfort you now, but consider that whereEVER your children come from, womb or world, the most important thing is that they have a mother who is healthy, happy, and has the energy to be there with them as they grow up. This will take some time to process and work through, but the most important thing you can do for whatever kids you have later is do what's best for YOU now.

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 12:51 PM Go to message in response to: Guest

 i really am not sure what to say to make you feel better....i just want to let you know that i am so sorry and that my prayers are with you.

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 1:00 PM Go to message in response to: newsjunkie

I am so sorry to hear that...  I am going in for a hysterectomy on the 13th...  but I am done having kids.  I can't imagine what it would be like to only have the options that you do.  I know that it's hard to "prepare" for children (and you never really are, anyway), but how does your FH feel?  Do either of you want to go ahead and have one while you can?  Is there any other way to put off the surgery? 

More important...  would it harm you to have kids with the physical problems that are bringing on the hysterectomy? 

I really am sorry...and you know that you are always welcome to vent here... 



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lori83 Posts : 1,852 Registered: 3/30/06
Re: Devastated- sort of WR
Posted: Jun 29, 2006 1:03 PM Go to message in response to: newsjunkie

You know you are in my thoughts...

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 2:20 PM Go to message in response to: newsjunkie

you are in my thoughts and prayers.

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 2:37 PM Go to message in response to: Guest

That is terrible!  It sucks to have dreams crushed.

I know this is probably the last thing you want to think about, but would it be possible to get some eggs, freeze them and have sorggate (sp)  when you are ready to have children?


Michele and Kyle

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 3:09 PM Go to message in response to: Guest

kyles is right. having a surrogate IS an option. if you read into it, you will find it is no more expensive then international adoption either. consider the option. there are many online sites that will let you know you options and support groups for people considering.

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 3:23 PM Go to message in response to: newsjunkie

Oh, my heart is hurting for you - you must be so very sad.

I, too, am thinking of you and hoping that all will be right in the end.

I know it's not much comfort now, but even the toughest things do have a way of working out in a more wonderful fashion than we ever could have imagined.

Jennifer

Friendofgusgus

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RomanticGirl Posts : 777 Registered: 3/28/06
Re: Devastated- sort of WR
Posted: Jun 29, 2006 4:26 PM Go to message in response to: Guest

okay, to me this has red flags all over it. I would get a second opinion, and a third, and a fourth. They've been wrong over and over again, and it just seems to me like they need to get their act together and make sure that they have exhausted all other option. I understand, though, that you are probably tired of getting diagnosed, it just seems to me that hysterectomy needs to be something they are absolutely positive you need. And it seems like they've done surgery on you before and have been wrong. Do you feel you've gotten enough opinions? I'm sorry this is happening. 

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 6:39 PM Go to message in response to: newsjunkie

I'm very sorry you are experienceing all of this.  But PLEASE do not let them take your uterus.  I dont know how old you are, but its pretty rare for a woman under 40 without kids to have adenomyosis.  I would get another opinion also....NOT from a surgeon, surgeons tend to always find something that needs to be surgically fixed, hint hint.  Try looking for a OB/GYN that specializes in this area.  There is a good chance you will probably still be able to have kids....as it is not uncommon for women with this condition not to know they have it until they opened up for a c-section delivery.  I wish the best for you and hope you find someone who can truely help you.

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myra Posts : 5,550 Registered: 3/28/06
Re: Devastated- sort of WR
Posted: Jun 29, 2006 6:59 PM Go to message in response to: Guest

I just did a quick Google of this condition. How was it diagnosed? Did you have an MRI? Ultrasound? The following is from an article I found, which seems to say that even if this condition exists, a complete hysterectomy is not always necessary. I agree with the second, third, fourth opinion (I'm a doctor's wife and, believe me, I know that they don't always know everything!)

 

I feel for you and I know that this certainly is not what you would wish for, in any case. There's a quote on my refrigerator that has gotten me through lots of tought situations: "Life is what happens to you when you had other plans."

All the best.

myra at www.classysassyweddings.com

 

"Patterns of adenomyosis as recognized by MRI seem to either be diffusely spread throughout the uterus (about 66%) or focal lesions (33%) that only occur in one or two places (7). If a non hysterectomy treatment is being considered for adenomyosis, then MRI should be used for the diagnosis and if focal disease were shown, then surgical resection of the endometriosis without doing a hysterectomy could be considered.

Ultrasound especially using color flow doppler can also be used to diagnose adenomyosis (8) . Sometimes it has difficulty differentiating smaller fibroids (leiomyomas) from adenomyosis but it is able to pick up about 80% of the existing lesions."

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newsjunkie Posts : 3,417 Registered: 3/30/06
Re: Devastated- sort of WR
Posted: Jun 29, 2006 8:30 PM Go to message in response to: myra

Thank you all so much for your kind words.  Don't worry- I will get 10 opinions if necessary and will travel to Timbukto if I hear of a treatment there.  A hysterectomy is a last resort. 

I was diagnosed during surgery for endometriosis.  My doctor said he could pretty much tell just by looking at my uterus that adenomyosis was pretty likely.  Diagnosis with an MRI can work in some cases but will probably not in my case (I forget why- I was so shocked and it is tough to remember exactly what he said).  

My main symptom is abdominal pain- severe, disabling abdominal pain.  There is a medication called Lupron that I can take (the one with the horrible side effects).  If it works then it is 99% confirmation of adenomyosis.  If that is the case and no other non-hysterectomy treatment works I would have to have it done.  The pain right now is constant and is so bad and while I am devastated at the thought of never carrying a child I really, really need to get better and stop hurting.

I believe freezing my eggs IS an option.  I asked my doctor that yesterday and he said it was and that we could discuss it and other options later if it came to that. 

I have another appointment with him in 2 weeks so I will learn more them.  I am still recovering from the surgery and am in a lot of physical pain on top of the emotional pain.  I also know of a world-renowned GYN here in Atlanta.  I had seen him for the endo but ended up going with the other doctor as neither were covered by insurance and the the famous one was REALLY expensive.  Will have to bite the bullet on that one now, I think.

My FH is having a tough time dealing with this, too.  He would probably not mind it if we never had kids but he knows how much I want them someday and he knows he would be happy once we had them.  We even picked out names- Jack Douglas and Madison.  He took a personal day today partly to be with me and partly because he is just so sad himself.  I don't think he would change his mind about marrying me if we can't have kids naturally but I am afraid other people may suggest it.  Could anyone be so callous? 

My mind is obviously all over the place.  I will let you all know if I make any progress.

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Guest
Re: Devastated- sort of WR
Posted: Jun 29, 2006 10:04 PM Go to message in response to: newsjunkie

I'm so sorry, at least it sounds like you have a wonderful FH to help you through this.  I agree with the second (and more) opinions.

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