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34 yr old, facing surgery 34 yr old, facing surgery

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  #1  
Unread 07-31-2003, 05:50 PM
34 years old, facing surgery

Hello,

It was just confirmed last week that I have a fibroid that is has doubled in 2 months. It's only 2cm, but the growth rate is concerning. I lost an ovary in emergency surgery in December due to a HUGE (watermelon sized) cyst on my left ovary. My right ovary already has a cyst going, and I've had a bad pap and cervical biopsies, which turned out to be negative.

I am having terrible problems with pain, pressure, bloating, bleeding, cramping, severe back pain, painful intercourse, irritability, you name it.

I seem to be in the minority, because I WANT a hysterectomy. My mother, grandmother and greatgrandmother all had these problems and suffered for years. They didn't have myomectomies as an option. But I personally don't want to have multiple surgeries, only to have a hysterectomy anyway.

What have been the info you've been getting regarding a hysterectomy in your early thirties? I presume that "instant surgical menopause" would be the same at 34 as it would at 44, but I don't know. I already know I would want HRT, so that is not an issue for me. Based on my history and current events, it would seem that everything would have to go....uterus, last ovary and cervix.

I can't seem to get anyone to understand my desire to just get all of the unhealthy parts OUT and not have to worry about any of that anymore.

Any info you could pass along regarding early hysterectomies would be greatly appreciated. Any support of any kind would also be greatly appreciated. I am getting married in October and have never had children. The toughest part has been resigning myself to the fact that I will never have children. My body can't take it, and I wouldn't want the baby to be at risk right from conception.

Man, this is SO hard.
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  #2  
Unread 08-01-2003, 04:20 PM
34 yr old, facing surgery

Hi FallBride

It certainly sounds as though you've had quite a few problems with your reproductive system!

You ask about having a hyst at age 34 and whether or not this is different from having one at age 44. Well, younger people generally tolerate major surgery better than older people so that's one thing in your favor (assuming you don't have other serious health problems). Younger women, like you, who have their ovaries removed tend to have more difficulty with menopausal symptoms if they do not take estrogen post op. I know you say that you would want to take estrogen, but this is just another difference to be aware of. Even if you do take estrogen, be prepared to go through some "tinkering" since many ladies find that it takes awhile to get just the right amount of estrogen to feel really good.

I can understand your desire to go the hyst route and avoid multiple surgeries. But it is heartbreaking that you have not had children and are getting married in October. This is a very tough decision for someone your age, particularly if you and your fiance want children. I'd also caution you that the early recovery period from a hyst is 6 to 8 weeks ... so I hope you are not planning to have surgery prior to your wedding. During that early recovery period there can be nothing in the vagina ... so that could really dampen your honeymoon, not to mention the fact that you still would not have much energy.

You asked for general information about hysterectomy. Here is a link to a series of articles that we developed to help ladies during the pre op period. I hope this will provide some additional information that will help you.

https://www.hystersisters.com/vb2/hsl...s=&forumid=170

Have you gotten a second opinion from another gyn? It sounds as though you have seen more than one doc. Just wondering if all of them are suggesting treatment other than a hyst. As you know, it is major surgery and it is very final... no going back and no chance of carrying your own child. It's a very tough decision.

Please keep us posted on how you are doing and what treatment route you ultimately choose. We'll do our best to provide support. Sending hugs your way.

Beth
  #3  
Unread 08-01-2003, 06:07 PM
Thanks, Beth

Beth,

Thank so much for your very thorough and thoughtful reply. It HAS been heartbreaking. I have always wanted to be a wife and a mom, but not at any price. Personally, at this stage of the game, the risks would be too great, both for the baby and for myself. And the baby doesn't have a choice. I do. I wouldn't want to set myself up for torture, nor the unborn child. We cried and discussed and prayed and agreed that children of our own just aren't right for us.

So far I have only been dealing with my one gyn. She was the one on call at the hospital when I had emergency surgery in December. She had to remove the left ovary and fallopian tube after draining the watermelon sized cyst. The recovery was what I expect a hysterectomy to be like.....she made a huge bikini line incision, I was in the hospital for four days, then went home with great swelling, great pain and great drugs ) My recovery was 8 weeks before I could even be a functioning part of the world again. No driving, no sex, no lifting. I had to have help showering, going potty, and getting in and out of bed. The point being, I have TOTAL faith in this dr and feel more prepared than others for a hyst. I do not fear the surgery at all.

That being said, we do have an appointment in September to see a specialist in Boston, at Brigham and Women's Uterine Fibroid Center. That's all they deal with, so we thought we'd see what they have to say and go from there.

My gyn basically told me if we wanted a child we'd better run home and make one ASAP, and that is not the right thing for us. When I asked her what would happen if we chose not to have children, she just couldn't believe that I wouldn't and balked at my questions about hysterectomy. She mentione a myomectomy first, but THAT terrifies me. I haven't heard any good things about that, and want all of this to be OVER. But, to her credit, she was talking to a woman who had just been told that kids were now or never. We go back to see her in four days to tell her that we are sure we will not be having babies, and what do we do to get all the bad stuff out ?!?!

I think after knowing that, she will be much more willing to discuss a hyst. I refuse to shop around for any dr. who will perform one. I trust HER and want her to do it. I just don't want to have to fight for one, ya know!

Whew. That felt good to get off my chest. I am so grateful that this place is here. My fiance found it and it has been such a source of comfort for me.

I hope to hear from you, and others.

Thanks!
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  #4  
Unread 08-01-2003, 07:02 PM
34 yr old, facing surgery

Hi FallBride,

I am 34 and had to beg my doctor to let me have my surgery. I have 3 children and my husband had a vasectomy 5 years ago, so I had no doubts that this was what I wanted to do. I was diagnosed 2 years ago with endometriosis and asked for the hysterectomy then and was told absolutely not because I was too young! I went ahead and had a laporoscopy to remove the endo, but it was back in full force just one year later. My doctor wanted to do another laporoscopy, but this time I begged for the hysterectomy. My mother, grandmother and both maternal aunts all had the same surgery in their early 30's, and all told me that they never regretted it. I was convinced that this was what I wanted to do. I felt like I did not need these organs anymore and wanted to be pain-free. I wasn't thrilled with the idea of being on HRT, but just couldn't take the pain anymore. Like you, I did NOT want multiple surgeries. She finally agreed.

Now, 5 1/2 weeks later, I am happy with the decision I made. At first, I did feel a sense of loss or grief that I didn't expect to feel. It wasn't grief that there would be no more children, but a sense that part of my life had come to a close. It did not last long for me, though. Now, I feel like I have my whole life ahead of me with no pain and more of a sense of confidence and optimism. I still have some pain from the surgery, especially when I try to do too much, but it is nothing compared to the pain I felt before surgery. I am on an estrogen patch, which seems to be working well for me. My life no longer revolves around when I will have a period or how long it will last or how painful it will be. I can actually look at the calendar and not worry that I'll be in pain if I take a vacation a certain week, or on my anniversary, or Christmas, etc. For me, this was the right decision.

My sister has endometriosis, too and was not able to have children. She has adopted a wonderful little boy from the former Soviet Union. We (the entire family) don't even think about him being adopted. He is simply a part of us! It was very painful for her to not be able to have her own children, but since he came into her life she is a different person, not looking back.

I know from weeks of reading the posts on the post-op site that there are many women in their 30's and even several in their 20's who had this surgery. If you have the chance, you may want to check out some of their posts. If you decide to go ahead with surgery, as Beth said it would be best to wait until after your wedding. Recovery takes a lot of time.

It is my hope that my story helps you with whatever you decide to do. Only you and your doctor can decide what is best for you, but whatever your decision, I wish you the best of luck!
  #5  
Unread 08-01-2003, 07:39 PM
34 yr old, facing surgery

I am soooo happy to read your posts! i am 28 and i have a surgery date set for november ( i wanted to plan it around vacations-i am a teacher).
everyone worries so much about being young and the ability to not have children. it is a valid worry. a worry i have worried about. however, like you, we are not ready to have children and we will not have a child out of desperation. we are trying to make the best decision that is right for us at this time. my doctor gave me the option of a myomectomy, but only because we had not had children. he didn't think it was the best option, but he wanted to leave the decision up to me and i think he was hoping i would ask the right questions. when he found out i dind't wnat to have multiple surgeries either, and that we weren't ready to have children now and that we had previously, even before all of this hoop-la began talked about adoption, i asked him "why would i have a myomectomy then?" he replied, "because you are stupid." he said it with a smile. every women is different and for me, and it sounds like for you too, we may make different decisions than others, but yet, the right decisions for us.
i am so uncomfortable with the outside chance that they can remove my mongo fibroids and then "piece" my uterus back together and if the endo doesn't hinder conception, then i could have a slight chance of a live birth baby. i am afraid for the child to grow in such an unpredictable environment.

i was so relieved to read your post. i feel and relate to so much of what you have expressed.
thank you.
  #6  
Unread 08-02-2003, 06:03 AM
Myomectomy

Hi ladies,

I believe that myomectomy can be a very good choice for some ladies ... it all depends on how many fibroids, their location, your surgical risk factors, the skill of your gyn. I don't think women who choose myomectomies are "stupid" and I don't think gyns believe that either.

At age 45 I was diagnosed with two large fibroids ... my uterus was 14 to 16 week size. My gyn presented all my options for treatment (do nothing, bc pills, Lupron, UAE, myomectomy, hysterectomy). We discussed each option at length. I started reading everything I could get my hands on. Now, I wasn't planning to have any more children. But I also wasn't planning to have an internal organ removed. So much of what I read cautioned women not to have hysts unless the circumstances were pretty dire.

I chose to have a laparoscopic myomectomy because the pain, pressure, bloating, clotting, etc. had really taken a toll and I wanted to be certain the fibroids would be gone ... I didn't feel confident I could achieve that with most of the other options. My gyn and another surgeon in their practice performed my surgery ... it's a very delicate procedure and not all gyns are capable of this type of lap procedure. I had two one-inch incisions, the surgery was performed on an outpatient basis and I went back to work in one week. Other than the first few days of recovery, I did extremely well following this procedure and the pressure on my colon was gone.

Unfortunately, the surgeons discovered severe stage 4 endo during the procedure. I was a mess. Although the fibroids were gone, the endo was everywhere. If fibroids had been my only problem, I really think the myomectomy might have taken care of my problems ... and being 45, I was approaching menopause anyway when these problems are less of an issue.

I ultimately chose to have a TAH/BSO because of the endo. I was very concerned about it encroaching on other organs ... my right ureter was stuck to my right ovary, there were concerns about my colon, etc. It felt like a bad dream to be facing a hyst so soon after the myo, but on the other hand, the lap myo allowed my gyn to "see" exactly what was going on and he then developed a pretty comprehensive plan for my hyst surgery.

While myomectomy is not for everyone and would not be a good choice for ladies with many fibroids, it is a viable option for some. I've read posts from ladies who had myomectomies and were able to conceive and carry children afterwards. It can be a miracle procedure. Each of us evaluates our options and chooses what we feel is the best treatment for us. One person's choice may not make sense to someone else ... but that is okay.

I know each of you are struggling with your reproductive problems, your options, and these tough decisions. There is no right or wrong ... and whatever you decide, I respect your choices. We are fortunate to have options!

Sending positive energy to each of you today.

Beth
  #7  
Unread 08-02-2003, 06:51 AM
34 yr old, facing surgery

Hello! I was 24 when I had my TAH in early June. I think my age was a definite factor in my recovery.....it has been great! (Although 2 weeks after my TAH I was back in the hospital to have my gall bladder removed, but that's another story!) My doctor was extremely supportive from the beginning. It was definitely the right choice for me.

If you have the hysterectomy and still want children, you might want to consider adoption. Just because you didn't physically give birth to the child doesn't mean you won't be their mom and dad. Its just a thought....
  #8  
Unread 08-02-2003, 09:31 PM
34 yr old, facing surgery

hey beth!
just to clarify--my doctor wasn't implying that women who choose myom's are "stupid", he was just saying that in my case, with all of my beliefs, i would be stupid/unwise to choose that option. he gave me all of the options he had given you and many of them we have already done. but with my fibroids and endo and situration and view on children, he agreed with me that it seems like a huge procedure when i would probably be looking at a hyst anyways. I am very concered with the number of fibroids i have and the "piecing together" of the uterus. like you said, each of us has our own set of values and issues and things we think are important and that is what we need to base our decision on. i don't think that women who choose myo's are stupid. i think that is a great option if that is what works for you. sorry it was misunderstood.
thanks for everything!
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