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Fibroid Surgeries and Still No Relief (2011) - UPDATED 2017 Fibroid Surgeries and Still No Relief (2011) - UPDATED 2017

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  #1  
Unread 01-09-2011, 10:53 AM
Fibroid Surgeries and Still No Relief (2011) - UPDATED 2017

Hi, I have been reading these posts for the past year and have finally decided to post something...so I'm kind of new to this. Pretty much since I could remember I've dealt with horrible periods & craps and have tried every birth control under the sun. A few years ago my doc told me I had several fibroids kind of smallish and we just needed to keep an eye on them.

End of 2009, my periods started to get extremely heavy to the point that I could feel clots falling out of me, practically pushing my tampons out (while on bc). These would last 10-15 days.

By Jan last year, I finally experienced the worst night ever of uncontrollable bleeding & pain. I went straight to the doc the next day, and they wouldn't do a sono because I was bleeding so badly & wouldn't be able to detect anything. He immediately put me on progesterone and with in a week he was able to do an ultrasound...but I was still bleeding. From that very difficult to read sono, he found my uterus extremely enlarged, 7 fibroids ranging in size with 10cm being the largest.

Having known all this time that at some point I would have to deal with these little guys, it became necessary to do something immediately. He decided to go ahead and start me on Lupron shots for 3 months and to perform an ab myomectomy at the end of the treatments. The lupron was not too bad, but it never stopped my bleeding. I bled from January until April every single day when I finally had the surgery.

So early April I had my ab myo, & he removed 10 fibroids that had gone down in size to 7cm and smaller! The surgery was ok, & I recovered decently with minimal issues. However, the bleeding would not stop. The clots & horrible cramping came back, & I felt even worse than before.

By August I had another sono done, and they found another 7cm fibroid inside my uterus (he might have missed)! This time they did another procedure to have it removed, and it was actually the size of a baseball. My family was horrified that it was overlooked to begin with. Everyone is telling me to get a second opionion, but my doc who is a well known fibroid specialist told me it could have been much smaller because of the lupron. He also did not want to cut "through" my uterus if he didn't have too.

So fast forward to today, low and behold I'm still bleeding! It just never seems to end. I have been on 3 different birth controls since August, I am experimenting with taking them continuously versus not. I had a horrible night 2 nights ago, and am fed up and don't know what to do. I know what probably needs to happen, but I'm only 33 never married, no kids, but have a wonderful boyfriend that I'm pretty sure is the "one."

So the funny thing is, my doc has never suggested a hysterectomy. Do you think it's because that is the obvious choice? In some ways I appreciate that he is always trying other options, but at what point do I give up? I know you can't answer this for me...just frustrated.
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  #2  
Unread 01-09-2011, 04:50 PM
Re: Fibroid Surgeries and Still No Relief

  Quote:
Originally Posted by Archlily View Post
my doc has never suggested a hysterectomy. Do you think it's because that is the obvious choice?
Hi Archlily:

Perhaps your doc is trying to preserve your fertility since you don't have any children yet(?). Have you had a 2nd medical opinion?

I hope you are able to find the right answers soon. I am sending huge cyberhugs
  #3  
Unread 01-09-2011, 05:26 PM
Re: Fibroid Surgeries and Still No Relief

I wouldn't think that your surgeon missed that last fibroid. They can grow like crazy in a few months. When I first found my fibroids, my uterus was the size of an orange. Within 3 months, my uterus grew to the size of a large football. It probably wasn't overlooked. When they decide to grow, they grow!
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  #4  
Unread 01-09-2011, 06:26 PM
Re: Fibroid Surgeries and Still No Relief

My fibroid went from no worries in sept to ... in Dec they need to remove it immediatly because it grew and over taking my uterus. and now its as if im 20 weeks preg.

im so soo sorry your having to go thru this. Im 37 no kids and getting a TAH on Wednesday. I have a wonderful support group of family and boyfriend that is helping me deal w/this decision.

I wish you the best.
  #5  
Unread 01-11-2011, 09:43 PM
Re: Fibroid Surgeries and Still No Relief

Good luck with your surgery tomorrow Pitabread. I know that was a big decision to make. I hope your recovery goes well for you.

It is pretty incredible how many similar stories there are on this forum. It's just so hard to believe that these fibroids can affect some women so drastically and others not. I do agree with you Danni3113 about fibroids going through growth spurts. I just wish I knew what caused that or could slow them down. They have tried me on so many meds & nothing seems to slow the process. I've seen articles that say estrogen feeds the growth & then I've seen the opposite. It's just so hard to believe I have had 11 removed & there are probably more...I'm scared to even get an ultrasound right now. I feel like the doctor must be really sick of my phone calls!

Anyway thanks for the support, it's really helped to be able to see everyone's stories.
  #6  
Unread 01-12-2011, 05:46 AM
Re: Fibroid Surgeries and Still No Relief

Thank you soo much. Im going in a hour.. and catching up up on all my emails quickly thank you for your support and yes ur right its so amazing how similar all of our stories and concerns are. just shout voice out your concern you will be amazed of the responses.

I wish you well as well..
  #7  
Unread 01-12-2011, 04:46 PM
Re: Fibroid Surgeries and Still No Relief

My doctor said it was definitely the estrogen that fed them. One of my questions was why did they grow so quickly.
  #8  
Unread 12-17-2015, 06:25 PM
Re: Fibroid Surgeries and Still No Relief

I found this old post I started and thought I would post an update. I am now 38 and actually trying to have a baby with the boyfriend I mentioned before who is now my husband. I have been through a lot this year with my fibroids and am not sure if there is much more I can do. We may ultimately be moving to adoption but somehow I'm still holding on to a little hope.

So in 2013 when we started trying I went through a hysteroscopic myomectomy to remove a couple larger fibroids. No big deal, recovered quickly then went on to see a fertility specialist. He did a couple exploratory hysteroscopies then ultimately decided to do a laparoscopic myomectomy in June 2014 to remove 3 on the outside of the uterus. Then in October he did one more hyst myomectomy to remove 3 more fibroids on the inside. After all that I did some unsuccessful fertility treatments, at which the doctor finally stated I had too much fluid from the fibroids for an embryo to attach, but he was really unsure about what was causing the fluid. Basically he determined pregnancy was going to be a very small possibility for me. I began looking into other options like surrogacy (very expensive), adoption and so on.

Somehow after all that, About 2 months later I discovered I had miraculously become pregnant naturally, but then I miscarried at 8 weeks. So after going through all the upset and confusion of this we finally decided to do one last round of IUI in November. We went in for a sono and the doc said he just couldn't recommend it due to the distortion of my uterus and number of fibroids he could count which was about 12-14. He said he could only recommend one last abdominal myomectomy to get the ones out from the outside. He was really concerned about my ability to carry a baby. So somehow after all this I decided to put my body through it again. I just had my surgery on Tuesday and he actually removed 30 fibroids in a 3 hour surgery. It seems so surreal to me and I'm really in shock about it all. I think my grand total of fibroids that have been removed is 50. I am not exaggerating in the least bit, but I a sure keeping them in business!

Somehow my doctor still seems cautiosly optimistic for me. I on the other hand think I'm finally finished with these things. The main reason I went through with it was because I actually got pregnant this year and I never wanted to look back at this time in my life and regret not trying everything. I have a ton of fears about actually becoming pregnant and the safety of my baby. However I'm in recovery mode right now and a little down too (mentally and physically). So, I'm just going to take it one day at a time and know that there is a plan for us to have a family,
  #9  
Unread 12-20-2015, 09:08 PM
Re: Fibroid Surgeries and Still No Relief

Hi, Archlily,

I just wanted to tell you to hang in there and that I'm sending you good vibes. This stuff is so difficult to deal with. My fibroids were discovered when I went in for a consult about IUI. I had a myomectomy, everything was more complicated than anticipated, and, at this point, I don't know how well my body would tolerate a pregnancy.

I've cried more this year than I ever have in my life. It's been a tough, tough year.

But I'm coming through it. You will too.

One day at a time, sister. Know that you're not alone.

Lots of love to you.
  #10  
Unread 12-14-2017, 08:56 PM
Fibroid Surgeries and Still No Relief (2011) - UPDATED 2017

Hello just posting another update. I know I should probably start a new thread, but if anyone wants to know my story I have pretty much laid it out in this thread.

Since 2015 my husband and I stopped trying to get pregnant and became foster parents to 2 beautiful girls. It looks like we will be adopting them in the next few months too! I have had no complications for 2 years and honestly haven’t given my fibroids much thought these days (I’m really just too busy).

Well we got an interesting surprise for my 40th birthday this year a positive pregnancy test!!! Today I am 14 weeks with a healthy baby boy. I’m still super anxious about the next couple months and progress of my pregnancy but super excited. Our doctors are in disbelief as well as pretty much everyone I know lol! So far it’s been very stress free and no complications. The doctor has already scheduled a c-section. Anyway I just wanted to post this update for anyone who might be not feeling so hopeful. This has truly been the most incredible surprise. So in 2018 we may be adding 3 kiddos officially to our family!

Oh and yes there are a handful of fibroids in my uterus hanging out with the baby. The doctor is not concerned about them and doesn’t feel like they are in locations that are harmful to the baby. So fingers crossed and praying that baby continues growing on track.
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