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Scared, Partial Hysterectomy Needed, Young & No Kids Scared, Partial Hysterectomy Needed, Young & No Kids

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  #1  
Unread 12-31-2011, 11:26 AM
Scared, Partial Hysterectomy Needed, Young & No Kids

Hi, I'm new on this site, and I can already feel the love and support. I have transmural fibroids. They're in the muscle of my uterus and stretch into the uterine cavity. The size isn't really the issue, but the location. I've been dealing with complications for 2 years and just can't take it anymore! I don't have a "so-called cycle," so my bleeding is unpredictable and I have to wear a pad everyday. Without notice I can be dry as a chip to having gushing blood and blood clots (as large as my hand). Sometimes all I can do is cry. I had to leave my friend's gradution because I started bleeding profusely..all of a sudden. This has severely affected my quality of life. I have even missed days of work. The doc put on me on rest this week because my iron was so low. My doc (who is very good by the way) says a myomectomy may not solve the issue because my uterus probably wouldn't be useful after removing the fibroids. I'm not willing to try any more drugs or pills to play rushing roulette with my body! Temp solutions work, but I always get back in the same boat. I'm considering having a hysterectomy to remove my uterus. I'm in my early 30s and still want the option to have kids, but now I'm more concerned about my health. Adoption and surrogacy are still options. I'm thinking about having the surgery in January. Any advice would be greatly appreciated!
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  #2  
Unread 12-31-2011, 12:53 PM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

Hi Chacha,

I started having the same symptoms you describe when I was 35. It took 3 doctors and nearly 3 years before I was taken seriously and diagnosed with fibroids. I, too, did not have children yet, was newly married and hoping to get pregnant. I opted for myomectomy and the results were good - BUT, the fibroids I had removed were penduculated submucosal. During surgery the doctor discovered other smaller ones he could not remove at the time due to their location. http://www.nuff.org/health_uterinefibroids.htm

I did get pregnant the following year, but miscarried. Since then, the fibroids grew to the point I could never get pregnant and due to my age, was pretty sure I was no longer interested - not interested in having a teen in my 60's.

When the fibroids became symptomatic again and with the addition of abnormal pap results, my doctor and I decided it was time for a hysterectomy. Age 47.

I went through my grieving process with my miscarriage and the birth of my first niece shortly after my expected due date. It was hard coming to the realization I would not have a child of my own and coming to terms with it. I do have a step daughter who lives with us and I don't feel like I am missing out on parenting, but from time to time I feel I miss the bond of a biological child. I feel for you.

On the flip side: I also know the relief of putting all these bleeding problems behind you. Finally deciding to have the hysterectomy felt like the weight of the world was lifted from my shoulders.

I'm 6 weeks post-op and feel great and am looking forward to a new me - one who doesn't have to plan her life around unexpected and heavy bleeding, leave events to deal with flooding, able to participate in family outings where there isn't a convenient toilet every 30 minutes, ...... You know the drill. I wonder now why I waited so long.

I wish you all the best, no matter what your decision. I'm glad you found this site - it's full of wonderful women ready to support you and help you in whatever way possible.

Take care and (((BIG HUGS)))
Lila
  #3  
Unread 01-01-2012, 12:17 AM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

Thanks so much for sharing your story. I have subserosal and submucosal fibroids which leave me with so much pain and bloating. I feel I could handle this better if it happened once a month around the same time! I'm so anxious and uncomfortable when I go to work or out with friends because I fear what might happen. However, my friends and family support me because they know what I have experienced over the last few years. I'm just trying to come to grasp with the hysterectomy because it's so final. I believe I've weighed all my options. I'm not willing to take more/different BCP for a temp fix. Did you ever consider UFE or the MRI guided surgery (actually just heard about that one)? Thx for your help.
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  #4  
Unread 01-01-2012, 10:07 AM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

Oh, (((sister))) I can really understand what you're going through. Here's my story:

When I was 28, I had my dd. When the doc was doing his rounds on me, he casually mentioned that I had "a couple" of fibroids, the largest of which was about the size of a golf ball. He said they'd probably shrink down to the size of a pea and nothing else was said.

In the back of my mind, I remembered that my mother had a hysterectomy when she was 40 because of fibroids, but I just didn't even consider it an issue, because she never complained about it.

Fast forward to when I was 40. I found myself pregnant once again. I knew I was a high-risk pregnancy because I was very overweight. Doc said, don't try to lose weight and don't try to gain it. (I ended up gaining 7 pounds during the pregnancy, so I think I did very well on that front.)

I had the standard ultrasounds, and when I was about 5 months along, had amniocentesis because of my age. (Where's that "old woman" smilie when you need it? ) The doctor who did the amnio gave me some topical anesthetic, then pushed the needle in... and then it just stopped. He pushed harder -- no go. I asked what was wrong, and he said, "There are fibroids EVERYWHERE!" OK, now I was getting a little concerned. He did eventually complete the test -- by finding a pocket of fluid in an area he had not gotten numb. This was not a fun day.

Then, about two months later, I told my that I was worried because I couldn't feel any kicks on the right side of my belly. She did an ultrasound, and said, "Well, that's because there's a fibroid the size of a softball over there!" This was making the baby lie diagonally, so we picked the day for the c-section because she wasn't even going to attempt natural childbirth.

Two months later, my wonderful ds was born with no difficulties whatsoever.

Four years after his birth, I had a hysterectomy. The pathology said I had "over 30" fibroids, ranging in .5 to 2.5 cm in size. I also had a boggy uterus which had never really contracted after ds was born. Many of the fibroids were embedded in the uterine wall. But, as the had said when my dd was born, the fibroids did shrink after childbirth.

The reason I say all of this is that I'm here to tell you that it is possible to carry a baby to term with fibroids. (My sister did it as well.) Has the doctor said it is unwise to try to become pregnant? Neither my sister nor I thought we couldn't do it, so we just did it. I have had a couple of miscarriages, but no one ever said it was because I had fibroids.

I've also dealt with the awful bleeding, and yes -- I just wanted it to stop. But if you are really still wanting children, I would not have a hysterectomy until each treatment has been tried or ruled out. At that time, you can consider other options for parenthood if it is still important to you.

Many coming your way.
  #5  
Unread 01-01-2012, 01:25 PM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

  Quote:
Originally Posted by Chacha32 View Post
Did you ever consider UFE or the MRI guided surgery (actually just heard about that one)? Thx for your help.
UFE (aka UAE) was not practical for vast number and types of fibroids I ended up with. Magnetic resonance-guided focused ultrasound surgery (MRgFUS) is a non-invasive form of ablation. Similarly, not practical. You might want to check in the other forums for others who have had these, or similar, procedures.

As for the hysterectomy: Vaginal was not an option due to the size of my uterus and number of fibroids. Same for Laproscopic. I may have been a candidate for da Vinci, but as the procedure is not available in my area and traveling for surgery posed several logistical issues, I opted for an 'at home' abdominal procedure.

I chose to keep my ovaries, as long as they appeared healthy at the time of surgery, and go through natural menopause. There are pro's and con's to each option, so be sure to research yours if you have a choice.

My surgeon was awesome, my surgery flawless and my recovery textbook. 6-weeks post-op and I feel great - ready for just about anything and cleared for it as well. I'm still a little tender if I push too hard and still tire more easily than before, but that will pass. NOTE: This is not the case for everyone and everyone reacts differently to the surgery. AND - I followed my doctor's post-op instructions to the letter - something a few sisters did not do, which also caused post surgery issues. Peruse some of the post-op topics for more information.

Best of luck to you
  #6  
Unread 01-01-2012, 06:07 PM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

  Quote:
Originally Posted by Chacha32 View Post
Hi, I'm new on this site, and I can already feel the love and support. I have transmural fibroids. They're in the muscle of my uterus and stretch into the uterine cavity. The size isn't really the issue, but the location. I've been dealing with complications for 2 years and just can't take it anymore! I don't have a "so-called cycle," so my bleeding is unpredictable and I have to wear a pad everyday. Without notice I can be dry as a chip to having gushing blood and blood clots (as large as my hand). Sometimes all I can do is cry. I had to leave my friend's gradution because I started bleeding profusely..all of a sudden. This has severely affected my quality of life. I have even missed days of work. The doc put on me on rest this week because my iron was so low. My doc (who is very good by the way) says a myomectomy may not solve the issue because my uterus probably wouldn't be useful after removing the fibroids. I'm not willing to try any more drugs or pills to play rushing roulette with my body! Temp solutions work, but I always get back in the same boat. I'm considering having a hysterectomy to remove my uterus. I'm in my early 30s and still want the option to have kids, but now I'm more concerned about my health. Adoption and surrogacy are still options. I'm thinking about having the surgery in January. Any advice would be greatly appreciated!
Have you researched embolization? It cuts the blood supply to the tumors ,they shrink and caause no more trouble.I am not familiar with your specific fibroid type I had fibroids and adenomyosis also tumors located in the muscle wall.I will be 54 next week and my twins are now 34 No more babies were in my future.For yourself if you think you'd want a pregnancy/baby check this it may be an option for you.
Also a drug called Aygestin generally given for endrometriosis bleeding gave me releif for quite a time.
  #7  
Unread 01-01-2012, 06:11 PM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

I really appreciate both of you giving me much needed insight. I know that I don't want kids right now, but that could change once I get married and settle down. I could continue the "watch and wait" for another year or two, with the hopes of meeting someone special, but that's not a guarantee either. I'm going to peruse some of the other forums, too. Thanks so much!
  #8  
Unread 01-01-2012, 06:16 PM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

I've done some research on UFE, but my doc does not believe that will help my situation. He says it "could" be a temp solution where I would have to watch and wait. I risk being back in the same boat. Maybe I would consider it more if I were married or in serious relationship. At this point, I feel I want a permanent solution...so I know I want have to experience this again.
  #9  
Unread 01-01-2012, 06:16 PM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

I was in the same situation. 29 and no kids. I a few fibroids and severe endo. I was just so tired of being tired and in pain. It was a hard decision but after 4 surgeries, 4 years of TTC, and fertility treatments I had already come to the conclusion it wasn't going to happen. We started the adoption process a year ago. I'm realizing more everyday that it was the right decision. I have days where I second guess myself bu that's just the menopause talking!
  #10  
Unread 01-01-2012, 06:21 PM
Re: Scared, Partial Hysterectomy Needed, Young & No Kids

That's exactly how I feel. I'm soooo tired of dealing with this...so unpredictable. I'm tired of wearing a pad everyday because I don't know what might happen. I just want to be free again! I plan to make a decision within the next week or so. But, before I do anything, I have to increase my iron level because it's very low. Thank you!
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