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Had an abdominal Myomectomy after second opinion and so happy I did!
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03-15-2016, 01:01 AM
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HysterSister
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Had an abdominal Myomectomy after second opinion and so happy I did!
My story is kinda long but I want to share it with other woman who may be in my situation. I Had been having increasingly bad periods for about 3 years and my gyno that delivered my daughter would not take my insurance. No doctors in town would see me unless I was prego. Looking back I should have lied and said I was to get into a Dr and then say I had started that morning. Finally my insurance company found a Dr that said go to the emergency room and have them call me.
By this time my periods were so bad that I could not leave the house a couple days a month and I bleed for 28 days. When I got to the hospital my hemoglobin was a 7 and the ultrasound showed a 7cm fibroid. When I went to see the Dr a few days later he scheduled a blood transfusion (which was awesome!!!! It made me feel wonderful) And a d&c and hysteroscope. He swore I would need a hysterectomy and that my uterus lining was thick. When I had the procedures my uterus was about 18 weeks prego and the lining was not thick he didn't even really do the d&C there was nothing to scrape.
He wanted to cut me vertically and take everything!!! Cervix and all. This bothered me especially since his tune had changed about the thick lining. I decided to seek a specialist and look for a second opinion.
When I found my specialist she prescribed me Lysteda which was amazing. It completely changed my life. It is taken for 5 days of your period and for me it made the bleeding about 30% of what it was. Still very heavy but doable. She also scheduled an MRI rather then another procedure which really told her nothing. My fibroid was about 10cm and was in the lining of my uterus thus the heavy bleeding. With the lystida I was able to schedule the surgery when it was convenient for me. She was able to do an abdominal Myomectomy and remove just the fibroid and repair the uterus. I can even try to have a baby in a few months! It has been one month and I feel amazing. I stopped peeing a little when I cough and I had my period and it only lasted 5 days and was much lighter. It will get better as time goes on. I also lost about 10 pounds and who knows how many inches in my waist! ( I wish I would have measured)
Please do not rush to have organs removed! I am so glad I did my research and found that second opinion!!! Not all doctors are capable of doing this surgery and tell you that you need a hysterectomy when you may not. I have read on here the problems with a hysterectomy like bladder prolapse and problems with urinating and early menopause. A woman I talked to today said she gained 40 pounds and can't take hormones! So luck and happy I am not her! Good luck and please consider your options. Everyone told me I should just get it out but I kinda like it! I think I will keep it!
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03-18-2016, 12:22 PM
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HysterSister
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Posts: 7
Hysterectomy:
Ovaries: Kept 1 or both
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Re: Had an abdominal Myomectomy after second opinion and so happy I did!
Thank you for sharing your story! My fibroid is the same size as yours was and I was told to get either a hysterectomy or myomectomy. I am considering a myomectomy but was rubbed the wrong way by the gyno who I was referred to because she seemed to have rushed through the appointment and barely paid attention to my ultrasound results. So now I am going to definitely get a second opinion and then interview the physician before finalizing a decision on surgery.
Best wishes to you!
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03-19-2016, 11:03 PM
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HysterSister
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Re: Had an abdominal Myomectomy after second opinion and so happy I did!
My doctor took about 3 seconds to look at my MRI too! I think they just know in a glance! If this dr can remove it and leave your uterus who cares if you don't become friends. Mine rushed alittle too at first. She did take more time after my MRI and of course the day of the surgery and after. I think these specialist are VERY busy! I know mine was. When I first went to her and said I really don't want a hysterectomy she never even presented it as an option. No pressure at all to get one. Other drs I saw wanted me too. I think it easier for them. Look around for someone you feel more comfortable with but don't pick the dr that wants to do a hysterectomy and can't' do the myomectomy just cause their bed side manner may be better! You want the smartest most skilled doctor not the one you think is the nicest! Good luck!
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03-20-2016, 08:40 AM
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HysterSister
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Posts: 414
Hysterectomy: June 1st, 2015
Surgery Type: LSH
Ovaries: Kept 1 or both
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Re: Had an abdominal Myomectomy after second opinion and so happy I did!
It took me FIVE doctors to finally get a correct diagnosis. No one ever even ordered an MRI, until the 5th one. The first 4 said I had "huge fibroids" and ALL FOUR said I needed a total hysterectomy, large vertical cut, ovaries, cervix, etc. I looked into every possible option, and NOT ONE would do a myomectomy.
I had multiple endometrial biopsies, vaginal ultrasounds, etc., all showing "HUGE FIBROIDS." I write that in all caps because, as it turns out, I had no fibroids at all.
The 5th doctor offered not only a myomectomy, but said, let's just get an MRI so we can get completely clear. No fibroids, not even a polyp. Adenomyosis, bulky uterus. Not only that, but he did my hysterectomy laparascopically, and he left my cervix and ovaries. I'm a new woman, and I never had the weight gain, the "old lady menopause look" that I was afraid of, nothing. I'm much older than you (53 at surgery day), but I'm still very vain.
Go to as many doctors as you need to, get as many opinions as it takes. I'm so glad I didn't let them just take everything. Feels so much like organ harvesting. Really disgusted me once I got it all sorted out. Oh, and I went to the "best" OB/GYNS in my city. The most highly rated, highly educated people around. Yet the brush-off's I received were almost lawsuit-worthy.
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03-27-2016, 11:06 AM
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HysterSister
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Posts: 2
Hysterectomy: May 7th, 2016
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Re: Had an abdominal Myomectomy after second opinion and so happy I did!
I have been suffering off and on for over 2 decades now with fibroids, however my situation is a bit different. I have only had two months, thus far of heavy and sustained bleeding. Despite having multiple "growths" Pain has been my issue. I currently have a 11cm fibroid in the left section of my uterus. And two smaller(4cm) ones. One near my cervix and the other on the right side. I have been told those are "encapsulated"
The 11cm one is now pushing the uterus and "crushing" my right ovarie. which felt like a kidney stone passing. Or back labor. Having never had experienced labor I can only guess- I had a successful csect in '02 because of fibroids.
Now my gyn, that delivered my daughter 13 yrs ago. And knows of my issues is suggesting an abdominal hys. But I am balking at the idea. The down time required to recover just will not work for me. I have horses that literally no one else can take care of without my being worried constantly. My house has stairs to get into it. And my bedroom is on the second floor. And I do not have a tv up there. And spending weeks on the couch isnt a pleasant thought either. Never mind being trapped in the house. And not being able to do anything this summer with my daughter and husband.
Then there is my attachment to my uterus. Maybe an unhealthy one. But I have had this uterus for 46 yrs. And I dont care what my Doctor or the "research" says. I think it will change "me" and I can not have that. So I am looking into a group of Fibroid Specialists in Boston with hopes that they can offer me some option to losing my uterus and cervix. I know I dont NEED it anymore. I have had my child.. and it was a rough pregnancy. But I still feel that I NEED it there. Where it is. I feel like i am close to menopause. So why take it now?
Sorry this is rambling, but I have been a wreck. The pain this past week was tough. And now I have shingles as well.
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03-28-2016, 02:49 PM
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HysterSister
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Re: Had an abdominal Myomectomy after second opinion and so happy I did!
It sounds like you need to find a more experienced doctor who will not have to take your entire uterus. Either way you will be down for a bit. You won't be on the couch for weeks and you will be able to go up and down the stairs just fine. I walked all around the hospital while I was there. Its more of the heavy lifting that you will not be able to do. In less then a week I was up making dinner and folding laundry and stuff. You will just do stuff for a bit and then need to sit down and rest. I too had C-sections this is very similar except you don't have a new baby to take care off. So you can sleep at night and really take care of yourself. I went back to work after 3 weeks to a part time job but one that is pretty physical. Standing, some lifting lots of bending and squatting. I had no problems at all. Look round for a different doctor that is not soo quick to removed everything. I did not have any pain with my fibroid but I had the heavy bleeding. There is a medicine called Lysteda not sure of the spelling that reduced the bleeding about 80%. Ask you doctor about it. It save me from just about bleeding to death. It's been 6 weeks for me now and I would say I am about 95% and the last 5% takes ALONG TIME. Belly is still sore if I hit it and there is the tingling from all the nerves cut but that will take time. You will be able to enjoy the summer just find even if you have your surgery in July. Yes maybe no swimming especially in the ocean for a month but you will be able to drive after 10 days or so and you will be able to walk around an amusement park in 3 weeks or so. Plenty of time for summer fun.. When I heard 6 weeks I thought that too but its not 6 weeks! Good luck and keep looking for a second opinion.
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03-29-2016, 05:44 AM
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HysterSister
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Posts: 2
Hysterectomy: May 7th, 2016
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Re: Had an abdominal Myomectomy after second opinion and so happy I did!
Thanks so much for your reply.
I have a consult as a second opinion the second week of May with a fibroid specialist. I am sure that taking care of my horse will still be a big NO. But at least it will hopefully not be a 12 week forced hiatus. Right now I have some discomfort from the fibroid. But am also fighting shingles. Cause why not.
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