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Old 12-09-2008, 07:00 PM   #1
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Question Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Hello! I was doing a little research tonight and came across this message board, so I decided to join and get acquainted with some folks who know what I might be facing in January.

In a nutshell, I'm a 31 year old married mom of three wonderful kids who keep me busy all the time. They are 10, 7, and 6. I've always had really heavy periods since they started, and after my son was born (my 6 yr. old), my dr. suggested an ablation. That was about 3 years ago. It was wonderful...really light period then, not that much pain. But about 2 years ago, I started getting pains around my left ovary. It would get really bad at times, and others it would be a constant ache. So over the course of the last two years, I've had my regular exams, and gyno. said that he could feel what he thought was fibroid on pelvic exam on left side. So we did a vaginal ultrasound and said ovary was just slightly enlarged, but he decided most likely cause of my pain and swelling was adenomyosis. He said it wouldn't go away until after menopause and I was pretty much stuck with it unless I had hysterectomy. Well, I've avoided it for two years. I had a c-section with my son and it seems that most of my problems started after that, as far as pain goes. After doing some looking online, a lot of my symptoms resemble ovarian cancer. Bloating, increased abdominal girth (that comes and goes for no apparent reason), and pain. So I'm glad I'm having hysterectomy, but not looking forward to being down and out for 6 weeks. I'm planning on leaving my ovaries unless he decides they're too bad to keep.

My question is this: Does adenomyosis cause abdominal swelling that comes and goes? I know it causes pain and bloating, but this is so bad that I almost bust out of my pants that I could wear just fine earlier in the day. I am getting blood work done the week before my surgery..should I ask for a specific test re: cancer? My gyno has insisted that what I have will not turn in to cancer, and since ultrasound came back ok, should I just forget the possibility?

Thanks in advance and thanks for reading!

Tina

 
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Old 12-09-2008, 07:53 PM   #2
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Hi Tina!

I'm not really well versed on andenomyosis or ovarian issues, but I can share a little info.

It sounds to me like you might have endometriosis or adenomysosis. The way I understand it (in very simple terms is ) adeno is excess tissue build up each month within the uterus. Endometryosis (whew - my spelling is horrid tonight!) is mentrual tissue building up outside of the uterus (within the abdominal cavity). I would think either of those can cause swelling and bloating each month.

Has your doctor done an ultrasound on your abdomen (when you had the transvaginal one)? If not, I would think that would be the first line of screening. A doctor can order a CA125. It tests proteins (I think) that are in the blood. Many different things can elevate the CA125, so a raised level doesn't mean there is cancer. So it isn't terribly reliable.

It sounds to me like you have a lot of adhesions from the c-section. You might talk to your doctor about that.

Have you asked your doctor about your surgery options? abdominal hyst vs lap assisted vaginal vs. vaginal vs. DaVinci/robotic. I had my hyst LAVH and I was only "down" for 3-4 days. I walked around my apartment complex after 3 days. I went to lunch with a friend on day 8. I drove on day 14.

If you don't have a second opinion, I'd like to encourage you to get one. If nothing else, find different surgery options.

I hope that helps. And welcome!

 
Old 12-11-2008, 08:49 AM   #3
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Hi--

I found this board today, and I had to register to post to you. I, too, was told I needed an abdominal hysterectomy with a 4-6 week recovery and 4-6 days in the hospital. I got a second opinion and they recommended the same thing due to the size of my uterus and prolapse issues -- as well as possible adenomyosis (they didn't see any fibroids on ultrasound). At the 2nd opinion appointment, I enquired about a "uterine suspension". The OB/GYN gave me a referral to a doctor 2 1/2 hours away (in Edina, MN) that does that type of surgery.

The OB/GYN in my town was snippy with me and had the attitude, "Why don't you just get the hysterectomy?!" I just wanted to check all my options before consulting to major abdominal surgery and removal of my uterus and cervix. I'm also only 41 years old and didn't want it to affect my sex life negatively for the rest of my life.

Because of the OB/GYN in my town, and because I started to reason that the surgeon in Edina would say, "It's too big, I can't sling that! You need a hysterectomy, why'd you waste your time coming down here?", I was very nervous about the appointment in Edina.

HOWEVER, I was soooo glad I went to see him. He was very kind, compassionate, knowledgeable, and skillful. He did say the uterus would need to be removed due to the size and the problems it was causing (with bladder, bowels, prolapse, etc.) BUT-- he would not only do it laparoscopically (go home the same day or next day, with a 2 week recovery-- I was walking around the MOA at 2 weeks, albeit slowly, and I probably overdid it a little...), but he would leave my cervix AND tighten up the stretched ligaments (I gave birth to five 8lb boys!)so the pelvic floor muscles could help hold everything "up" where it belonged in hopes of no further prolapses with various organs.

I am now 2 weeks and 6 days postop, and I am planning to sub a day tomorrow -- although it is senior high, and the teacher is making it easy for me so I can be off my feet most of the time.

I am no longer on pain meds, but once in awhile need to take ibuprofen before bed due to overdoing during the day. (It's hard to take it easy with 5 sons and a hubby!)

So, all that said, check into ALL your options-- especially with the ages of your children. It's a less intense recovery period to have it done laparoscopically. That option was not offered to me in my town, neither was the vaginal, because of the size of my uterus. This surgeon (and those like him) specialize in gynecology and surgery. They don't have the busy-ness of the OB side, so they can focus and become more skilled at up-and-coming, advanced surgical procedures and treatments.

It may be that you need an abdominal hysterectomy, but better to have checked all your options, than wish you had.

Another resource I have found informative and helpful is hyster sisters

Best Wishes!

Last edited by kntheboys; 12-11-2008 at 08:51 AM.

 
Old 12-11-2008, 11:03 AM   #4
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Hi...

I'm new on here, just recovering from my TAH 9 days ago... Only 2 days in hospital and doing ok... I'm probably doing too much but l cant just sit here eg hoovering, cooking meals and even been out on my own to the shop! Thought it was going to be worse than it is.. Still get pain and often uncomfortable but get on with it as us women do!!

Debbie

 
Old 12-11-2008, 12:00 PM   #5
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Hi, thanks for all of the replies. Like I said before, I am a busy mom, as we most are....

When I had my c-section, my incision site didn't heal properly, or should I say, the most desired way. I have no fat tissue between my skin and my abdominal muscles...so all of the fat and whatever kind of hangs over right there. I am not big girl, but I could stand to lose a few pounds. At one of my gyno. visits, the dr. said something about scar reconstruction. He said he would like to make it "look better" for me. Well, now that the day is arriving, I am thinking that if the only reason the abdominal hyst. is going to happen is to reconstruct my scar..then who cares! I don't wear a bikini and my hubby (we've been married 13 years) could care less. So I called drs. office last week and told the nurse that if he's only doing surgery abdominal way to reconstruct the scar, then I want the vaginal surgery done. He never mentioned to me previously that it can be done totally laproscopically...is that a possibility? So anyway, the nurse went looking through my file and said that everywhere he has noted anything it says "total abdominal hysterectomy" and that I have a "nodular uterus." So she said I could talk to him during my pre-op visit but seemed like he was going to lean more toward the abdominal route.

I want what is best for my body...even it means the most difficult recovery. I've had the c-section, and two laproscopic surgeries (gallbladder and appendix) so I don't know if there is a lot of scar tissue wreaking havoc. I would think that the abdominal way would allow for a better assessment of what's specifically going wrong and to clean out any adhesions or what not. I told my husband that I wanted to get another opinion, but the only other local place there is, I don't want to go to. I had my first two kids with them, and I didn't like them at all. I do, however, really like my gyno. I've never heard anything negative about him at all...not one report. So, I guess I should go ahead and find someone for that second opinion...

Debbie--thanks for the reply. It does offer hope! I was talking with my husband last night and I said "Maybe I don't remember how bad the recovery was with Izaiah (our son). I'm sure the bundle of joy made it all worthwhile and it was just something that I had to go through.

Thanks to all for your advice and responses. I am going to go find an in-network provider to see about that second opinion....

Tina

 
Old 12-11-2008, 02:40 PM   #6
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Read about laparoscopic surgery versus abdominal surgery. There are fewer risks and side effects. I don't know about the adhesions, but I just read a bunch about them last week and never saw anything about them having to be done abdominally.

I had an emergency laparascopic appendectomy 4 weeks before my laparoscopic hysterectomy.

I read somewhere that it takes more skill to do laparoscopic surgery than open. I asked the surgeon that did my LSH why they don't do it in my town, and he said that there are different reasons, but one being that there's not a lot of time in residency to devote to just surgery when they go into OB/GYN, and that their practice tends to be overwhelmed by the OB cases.

In fact, when I read on my surgeon's website, I saw that he and his colleagues had stopped the OB side of their practice in 2000 to create this practice so women had more and better options. They are MN Gynecology and Surgery Associates.

I actually read online back in August about a doctor in PA that does the same type of surgery, etc. and wondered how in the world I would find someone like that in MN??! I "accidentally" ended up with my surgeon due to the referral for a "suspension consult". I was upset that they hadn't even offered it laparoscopically in my town, but then was glad to have the surgeon I did because he teaches at the U of MN, does conferences and surgeries all of the country-- and even the world-- and has done 1000's of them.

I had varicosities, adenomyosis, and globules/cysts as well. I don't know how big yours are, but my uterus was the size of a 10 week pregnancy back in May when I had the ultrasound, and the pathology report at my 2 week postop last week said it was 191 grams (normal is about 60 grams).

There is less chance of nicking your urethra, etc. with laparoscopic surgery my surgeon told me when I asked about the benefit over abdominal. The other reasons were mainly the recovery period and such.

I did have a lot of pain on the lower left side for about a week -- but I think it was because I had just had the appendectomy (it hurt from the lower incision to the left incision which were 2 of the same spots as my appendectomy incisions, and it felt like it was a muscle or nerve or something). Most people don't seem to have much pain with LSH, but I can't imagine the pain with abdominal when I could barely get in and out of bed with the pain I had and didn't want to cough, etc. But then, you had a C section, and that's probably comparable to TAH?

Anyway, I found that you have to "push" to get your questions answered and get the kind of care you need. Your doctor just may not be able to do it laparoscopically -- but there may be many that could. I would just want to know that. (I wasn't "pushy", I just kept asking questions and researching so I was comfortable with the answers and my options.)

BTW, I like your username. I'm "livin4him2day" also.

Last edited by kntheboys; 12-11-2008 at 02:45 PM. Reason: correct typos

 
Old 12-11-2008, 06:19 PM   #7
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Hey ladies, I hope ya'll are doing well!

Quote:
Originally Posted by kntheboys View Post
So, all that said, check into ALL your options-- especially with the ages of your children. It's a less intense recovery period to have it done laparoscopically. That option was not offered to me in my town, neither was the vaginal, because of the size of my uterus. This surgeon (and those like him) specialize in gynecology and surgery. They don't have the busy-ness of the OB side, so they can focus and become more skilled at up-and-coming, advanced surgical procedures and treatments.

It may be that you need an abdominal hysterectomy, but better to have checked all your options, than wish you had.

Another resource I have found informative and helpful is hyster sisters

Best Wishes!
I never saw this post, but have to say amen, amen, amen, amen! It never hurts to check your options when going for major surgery! I also agree with going to gyn/only for the very same reason. Thanks for sharing your experience!

I also want to toss in that you need to take it easy while recovering. You only have one chance to heal from this surgery. Pamper yourself and let others pamper you!

 
Old 12-21-2008, 09:46 AM   #8
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

--------------------------------------------------------------------------------
Hi! I am new to this site but read your post and had to reply. I to am scheduled to have hysterectomy in January for possible adenomyosis. I have been struggling with the symptoms for many years had many tests and been given many diagnosis. I have swelling of the abdomen that comes and goes. Sometimes looking 6 months pregnant when my belly was normal that morning, severe pain that actually radiates through lower back and down my legs. I had severe bleeding until they removed my uterus lining (endometrail Ablation) 5 years ago. I have bouts of constipation and bouts of diarhea and always extrememly tired.

I have also been told that this will not turn to cancer however, a hysterectomy is the only "cure". Because of the symptoms and tests I have had in the past, I have been diagnosed with irritable bowel, pinched siatic nerve, and even been told its "just alot of stress" none knows your body better than you! Don't know about you but I will be glad not to feel pregnant when I'm not or have to unbutton pants on the way home from work that were loose when I put them on!!!

I am 34 years old with 2 children of my own and two adopted children. So, the thought of not being able to bear children is definitely not a down side to me. I have talked to several people who have undergone the hysterectomy and found almost immediate relief (with in weeks) from all the symptoms they had been suffering from. So I am getting somewhat excited about the surgery! I have read alot about wieght gain on the internet in my searches but 4 out of the 5 people that I have spoked to after surgery actually lost wieght from the surgery without putting weight back on (even 10 years post op) and the last one had no gain or loss. Maybe without the swelling I can actually comfortably wear something besides sweats!!! Anyway just wanted to let you know that someone else out here can relate. I do not have to have the abdominal hysterectomy. I am thankful for that. Sounds as if you may not have a choice. I truly wish you great health and a speedy recovery!!!

 
Old 12-21-2008, 06:55 PM   #9
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

I just wanted to let you know that I just had a hysterectomy and had to have it removed abdominally, it'll be 2 weeks tomorrow. I ended up not being a good candidate for vaginal or the scope. They did a test to find out if I was a good candidate or not about a week before the surgery, they called it a pull test and said it would be a little painful, it really wasn''t that bad, they also did a biopsy of my uterus, that was a little more painful but nothing you can't handle and it only takes a few min. I think having it done abdominally ended up being the better call, they found a few other things and scar tissue and adhesions that would have been alot harder to get through with the scope. I too have had my gall bladder and appendix removed and I had a c-section. I just wanted you to know that it all went good and I'm still on the pain killers and cant do everything by myself but I can go up and down the stairs by myself now but I'm supposed to keep it to a min. of 2 x a day and I did go to walmart for 2 hours today. You just really have to take it easy and let people take care of you. I am 36 and my kids are older but your kids will surprise you and will help if you just ask them, even at their young ages. They ended up finding alot of tumors (like 10) in my uterus and also had endometreosis and the adno sp? (the one that is inside your uterus) so nothing else would have taken care of it. This is the longest I have gone without horrible menstrual pain and with out having my monthly (which I had started calling my daily) in over 2 years. I'm still recovering and have about 6 more weeks but I'm already glad that I had it done. I feel it was a good decision and am doing pretty good so far. Its not the same as when you had a baby but it does give you a lot to look forward too. I was able to keep my ovaries so I'm happy about that. I'll try to keep you posted on how things are and will keep you in my prayers. Good luck.

 
Old 01-12-2009, 10:55 PM   #10
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

-------------------------------------------------------------------------------
Hi! I am new to this site but read your post and had to reply. I to am scheduled to have hysterectomy in January for possible adenomyosis. I have been struggling with the symptoms for many years had many tests and been given many diagnosis. I have swelling of the abdomen that comes and goes. Sometimes looking 6 months pregnant when my belly was normal that morning, severe pain that actually radiates through lower back and down my legs. I had severe bleeding until they removed my uterus lining (endometrail Ablation) 5 years ago. I have bouts of constipation and bouts of diarhea and always extrememly tired.

I have also been told that this will not turn to cancer however, a hysterectomy is the only "cure". Because of the symptoms and tests I have had in the past, I have been diagnosed with irritable bowel, pinched siatic nerve, and even been told its "just alot of stress" none knows your body better than you! Don't know about you but I will be glad not to feel pregnant when I'm not or have to unbutton pants on the way home from work that were loose when I put them on!!!

I am 34 years old with 2 children of my own and two adopted children. So, the thought of not being able to bear children is definitely not a down side to me. I have talked to several people who have undergone the hysterectomy and found almost immediate relief (with in weeks) from all the symptoms they had been suffering from. So I am getting somewhat excited about the surgery! I have read alot about wieght gain on the internet in my searches but 4 out of the 5 people that I have spoked to after surgery actually lost wieght from the surgery without putting weight back on (even 10 years post op) and the last one had no gain or loss. Maybe without the swelling I can actually comfortably wear something besides sweats!!! Anyway just wanted to let you know that someone else out here can relate. I do not have to have the abdominal hysterectomy. I am thankful for that. Sounds as if you may not have a choice. I truly wish you great health and a speedy recovery!!![/QUOTE]

Last edited by gr8mama; 01-16-2009 at 10:07 AM.

 
Old 01-14-2009, 02:05 AM   #11
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Hi all,
Just come back from the drs from my 6 week check. Everything ok. Glad l did it and its all over. Just had the flu too. Ouch! all that sneezing but on the mend now! Everyone take care Deb x

 
Old 01-15-2009, 08:01 AM   #12
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

Well my personal opinion is if you are done having children then go for the hysterectomy. I have been asking for one sine the age of 25 due to all the porblems i have had including cervical cancer. I had my total vaginal hysterectomy done yesterday. Came home about midnight lots of pain but the doctor said the surgery was text book and within 2 days will be bettter than I have been in years. The swelling in my stomach has already lessoned even with the gas. I hope all goes well. I plan to start new post with my surgical experience. Best Wishes!!!

 
Old 01-28-2009, 08:10 AM   #13
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

liveforhim2day,

Just curious if you had your surgery and how you were doing! I hope all is well with you and wish you good health!

 
Old 01-28-2009, 12:55 PM   #14
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Re: Abdominal hyst. sched. for Jan 20 due to possible adenomyosis

The place you mentioned is a great place to talk to other women about issues involving hysterectomy pre-op and post-op. This place is great, too!

I had a TAH back in 2006. It was one of the best things that I have ever done in my life. After going through countless surgeries and receiving many treatments for severe stage IV endometriosis, it has been the only surgery that relieved me from my pain.

Unfortunately, I didn't have much of a choice. My surgery was medically necessary because of the obstruction of menstrual flow from adhesions. Also, my ovary had lost blood supply and pretty much died because of the endo adhesions.

I agree with you about always seeking other treatments before considering a hysterectomy. It should be the last option when all others have been exhausted.

Hope you all continue to heal well.......

Last edited by scarolinagirl; 01-28-2009 at 12:56 PM.

 
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