Newbie...ready to schedule the hyster!

Wow...what a great board! I am overwhelmed but excited to find it!

Here's my story. I'm almost 39 and have hated my uterus since I started getting periods when I was 14. I've never EVER had a "good, easy" one. Ever. I have been diagnosed in the past with stage 4 endo, polyps (have had countless of those buggers removed, including one that grew to softball size) both tubes have been blocked and cleared and at least one of them is blocked again. Somehow I did manage to have 2 kids in there, but I won't be having any more-my youngest has a heart defect caused by my autoimmune disease.)

Last year my old OBGYN attempted an ablation, but it was unsuccessful-my uterus perforated-and she said that my next step was a hysterectomy. She said I am a perfect candidate for a vaginal one since my uterus is falling over anyway. Nice.

I have switched OBGYNs though b/c the hospital that the old one is affiliated with is horrid, and I can't bear the idea of having major surgery there. This new OBGYN has suggested that we do another ablation and see how it goes, but he is willing to do the hysterectomy if I want...having talked to my hubby, girlfriends and mom, I have decided to just once and for all get rid of the pain, midcycle bleeding, and all the nastiness! I am a little nervous and I am unsure about leaving the ovaries in there or not. Reading some of the other posts makes me lean even farther toward having them out, since I do have endo problems and I don't want any more pain!!!

Also, the women in my family tend to hit menopause at about 43, so I'm only 4 or so years out from that anyway. I don't want to take HRT due to the risk of clotting--my parents both had clotting issues so that doesn't seem too good.

I haven't called the doc to schedule yet...just made the decision tonight with hubby, but am looking more toward June when my oldest will be out of school so that my mom (who will come into town for the surgery) won't have to drive him every day. Hubby thinks I should have it done next week LOL!

Any advice and encouragement would be most appreciated. I'm really excited about the idea of ending this 25 year battle, KWIM?

Thanks,

Kay

hi Kay, I can relate. sounds like we have asimilliar history NEVER had an easy period. Have 3 weeks out of 4 that I'm ball and chained to my cycle. Having my surgery Monday 1st May. Have to have a Abdominal because my fibroid is too big for a vaginal. My Dr wants me to keep my ovaries and I have decided no; because it's one thing to have your uterus out-[good no more bleeding] but I do-not want to deal with my hormones taking over and I may still get the symptoms of PMDD....which I am hapy to live without. I say Go for it.....plan it alittle and let it go....I've decided I will be better than I ever have been when I can get on with 'living' Sounds like your already on the road to health......just making the decision and getting the right doctor and place to have the surgery is key.....[I have friends who are nurses in the hospital I'm in.....that is like a blessing from the universe.......So I give you what ever words you need to encourage you to look after you, so that you can put the battle to sleep and finally win the war....And as my friend says feel what it's like to be at peace!! good luck!!!

Paula

Thanks Paula,

Good luck on the first (I thought that was Tuesday though.) I am sure things will go well and how wonderful that you'll have nurse friends there to support you in the hospital!

My biggest fear has been the recovery time, although now I'm reading about outpatient hysters, etc. Wow! Of course those aren't for the abdominal ones, but it's still amazing.

You know, back in my late 20's when the endo was totally kicking my behind and I was bleeding more days than not, they put me on depot lupron to put me in "pretend menopause." They warned me about things such as hot flashes, moodiness, etc. I can honestly tell you that I had never ever felt better in my entire memory at that point! I felt so much better that I was just plain old happier because of it! Last night as I laid in bed, bloated to the point of uncomfortable, sore from who knows what in there (and it wasn't gas, it was the girlie things) I thought...there is nothing good going on in there! Time for it to go along with all my worries about it. (One of my best childhood friends lost a battle with cancer that started as uterine when we were 30.)

Thanks again for your reply. It is nice to know we're not alone out here, right?



Kay

I was on Lupron too, my doctor back then said that I could only have 2 cycles of it, but I felt so great I convinced him to let me have a 3rd, sometimes you have to go inside and ask your body what it needs, I know what mine needs. It's great that we can come to this board and talk, and encourage each other, and have women understand and totally 'get it' makes me feel like I'm not alone afterall . I have a yummy husband who this morning woke up and said "you know what I think I'll do,I'll put one of those bars on the wall of the bathroom, [next to the loo] then you'll feel more in control of getting up etc etc. Ahhh, what a love, it made me feel good, I'm off to the doctors in a minute and then to the hospital for my pre-op stuff. Just went over the mountains with my DH and my dogs its stunning out there, life is good You're right it is Tuesday................got my days mixed up!
take care of your self Kim

Paula

Sorry, Kay, I've been on the phone to my sister -in-law Kim, HELLO!!!!!!

Kay,

I'm so sorry to hear you are having such problems with endo. I was in the same position you are.

Have a few questions that may be helpful to you. Have you seen a endo specialist? here is a link for information on endo specialistists

endo specialists


Is your doctor qualified to remove endo from other areas it can be for example the bowels?

Are you planning on having your ovaries removed? If you are do you want to take estrogen or not?

The bad news on endo is if there is any endo left behind at the time of your hysterectomy the endo can continue to grow and spread.

Also taking estogen can cause problems as well.

There is also a forum for endo

Endo Forum

I hope you will be pain free soon.

>>Is your doctor qualified to remove endo from other areas it can be for example the bowels?<<

Good question. I have in the past seen an endo doc (he was in the endo sourcebook as a specialist but he was also an infertility specialist, which is why I saw him) but this doc I don't know about. He was referred to me by a friend of mine, he was her OB and is also her sister's OB as well as a personal friend of the sister. I figure he must not be so bad if she's willing to let a friend be her OBGYN, right? However, that doesn't make him a specialist in endo. So it's a good question.

>>Are you planning on having your ovaries removed? If you are do you want to take estrogen or not?<<

Well, I do NOT want to take estrogen. At all, really. My parents have both had clotting issues (mom's had a blood clot at least once in the back of her knee, my dad had a few strokes and a subdural hematoma before he died a few years ago.

>>The bad news on endo is if there is any endo left behind at the time of your hysterectomy the endo can continue to grow and spread.<<

Yikes...I thought if the ovaries were gone, the endo left too. SIGH. Better do some research on this and on the doc.


Thanks for the link to the endo stuff, and for the pain free wishes. I feel much lighter just making the decision. Sadly the doctor's office was closed by the time I called this afternoon. I'll try again in the morning.

Kay

Kay,



I'm glad to hear you are going to do some research on your doctor and your decision. I wanted you to know what can happen.

Best of luck to you.

We have many Endometriosis Resources you can read through to get you started on your research!

Unfortunately, endo takes a tough decision and complicates it!

Since your parents had clot isses, have you ever been tested to see if you have any blood issues? You might want to talk to your doctor about this aspect of your family history and ask if any testing could be done to see if you would have any blood issues. This might help you decide regarding the ovaries and HRT.

I retained both of my ovaries because I was so young when I had my hyst. This does mean that I have the hormones I need for my overall health, but it also means that the endo that was left behind intentionally and unintentionally is being fed by my own ovaries. But this was the best choice for me and my situation.

I wish you the best for you research and hope you also seek out at least a second opinion regarding what might be best for you. And if at all possible, you should consider seeing an endo specialist.

Keep us posted! s

Thanks...I actually haven't been treated for endo for years...although I am fairly certain it just didn't "go away."

This doctor (whether or not an endo specialist) is my "second opinion" in a way. The doctor I saw before this said my next step was a hysterectomy, and I really did like her. However, I just simply will not have surgery (or anything else, really) again at the hospital she is affiliated with. I had an ablation last June which went badly (probably due to old equipment) and they (I mean this literally) nearly killed my daughter. It's not a *bad* hospital, just very "small town" which is sort of silly, since it's in a suburb of Chicago.

Anyway, I hadn't realized that the endo was such an issue. I'm not sure if that's what is giving me pain, or if it's other stuff.

I hesitate to give up my ovaries due to the clotting factors and also because my dad had some good cardiac issues later in life. I don't want to take away the natural protection KWIM?

This doctor needs to open early tomorrow...I have questions for him to answer! LOL

Thanks,

Kay