Feeling torn, overwhelmed on decision

Hi there,

So, as far as I know I only have one fibroid about the size of a grapefruit (5x5) on the outside of my uterus. Well, it's enough to have caused me total pain and discomfort for the last 4 or 5 years. I have changed birth control pills maybe 5 times in the last 4 years. My periods are not heavy and the pills I am on now seem to be doing well in regulating my cycle. I feel blessed after reading so many of your posts about heavy bleeding.

Still, I have debilitating pain at times along with a feeling of being constantly completely stuffed....it's like all my organs feel jammed and pressed together in my stomach. So much pressure. It can make bowel movements very uncomfortable as well. I also have back pain and often feel a stabbing and ripping sensation in my lower abdomen and upper right abdomen. I have a heck of a time losing weight even though I exercise regularly and eat fairly healthy. And I have looked pregnant for 2 years!

I have had my period since age 11 and have been on BCP since age 14 to regulate my periods. I am now 36. It's not enough to say I am just over having periods (but I am) because I know that having a period is just uniquely female. But, when periods and fibroids and swollen stomachs start affecting your quality of life, I think it's time to make a change.

My husband and I have chosen to be child-free so I don't have the issue of wanting to have children. It would actually be nice to be without pain, without period, and without BCP for once in my life! I know that I ultimately have to make the decision because it is MY life. I thought I knew that I wanted to move forward with hysterectomy but after reading so many varying experiences, I just really feel torn about it. Also now considering removing only the fibroid but with the chance of it coming back, I don't want to have to have yet another surgery later.

Fortunately, no date has been scheduled yet and I don't have anything life-threating happening inside my body where I'd need to have surgery urgently. But, I do want my quality of life back ASAP. I think I will have a second opinion in the very near future now after reading all of your posts. I think that's the smartest next move to make for now.

Is there anyone else out there who has felt like this? I am so afraid of making a bad decision that I'll regret but at the same time afraid to go on with this type of pain and discomfort...I have so much anxiety when I know my period is coming because I know I am going to be hurting.

Anyone who is 100% feeling great after partial hysterectomy and back to normal? Anyone in a similar situation to mine who had a partial and now wishes she hadn't? I'm really trying to get all perspectives on this so that I am sure to make an informed decision.

Thanks for reading!

I was advised in January 2011 that the best choice for me was a hysterectomy due to a fibroid on my uterus, dermoid on my left ovary and cysts on my right, along with the heavy periods, the pain and discomfort and so on. As you stated a second opinion should be your next step. After my second opinion I opted to go see the gyn-oncologist that performed my surgery. I went armed with a list of questions, most of them I got from this web site. He was kind and patient and answered every question I had as honestly as he could. This was a major factor in my final decision to go ahead with surgery.

This is a wonderful site, but reading too much causes a great deal of confusion because everyone has such a wide range of experiences. After following this site for several weeks I opted to stay away from the question/answer portion until after my surgery. I stuck to the information and article sections only. After my surgery I became a member because it's a wonderful forum to get support, ask questions if you run into a problem and ask for advise. For someone in your position it's important to stick with the facts, risks and benefits of surgery for you personally without letting our experiences play into that. As you stated everyone is different and everyone will heal at their own pace and in their own time with or without complications. I wish you the best of luck in coming to any decisions you may have too.

Tracy

Only you can make the decision that sits best with you, but it's good to consider all your options and the voices of others who have tried different things.

I can only share my own experience. Two months ago, I was diagnosed with fibroids: an ultrasound revealed that my uterus was essentially the size of a 5 and a half month pregnancy. Something was in there that was at least 20 centimeters long. It knocked me flat to hear, but on reflection, so much made sense: my stomach had been expanding without my diet changing, I'd had digestive issues for years that I'd just chalked up to IBS or stress, there'd been little bits of pain here and there that had never stuck around long enough to really freak me out.

With the ultrasound, they didn't know if it was one fibroid or many. When I made the choice to pursue surgery, my surgeon ordered an MRI, which is much more detailed and precise. It showed what seems to be just one pedunculated fibroid, attached by a stalk to the outside of my uterus.

Given that, my surgeon has recommended we begin with abdominal myomectomy and take it from there: in her opinion, it's too darn big to get rid of with any less intensive procedures. UFE could shrink it, but it might not, and there's still the issue that it won't actually go AWAY. Because I don't have any period issues, and there's no endometriosis, known ovarian cysts, or other peripheral problems with my Lady Bits, it seems likely that my symptoms will resolve once the fibroid goes away.

Of course, the fibroid might grow back. I have to accept that. But it also might not, and the fact that it's ONE, not many, is a point in my favor. A hysto would be the only full-proof way to prevent re-growth, and I've wrapped my brain around the reality that this may happen down the line despite my attempts right now to avoid it. Heck, it may happen once my surgeon gets in there next week, because there's a possibility that it's INSIDE the uterus, and a fibroid the size of mine has pretty much taken over and ruined everything if that's the case.

My feeling, just for me, is that if I were to go the hysto route straight off, I'd always wonder if it had been necessary. If I start with the myomectomy, I buy myself the strong possibility of not needing anything else and the time for the field to figure more stuff out: there are procedures coming down the pipeline like mgFUS that may give women way more options in the future, and those things can develop while a new fibroid grows. It's a "gamble", but if I lose, I'll go into my later hysterectomy knowing that this is the best and only possible choice.

I'm in my mid thirties now. As a kid, I had four separate surgeries for a bone condition (which, ironically, involves YET ANOTHER SET of large benign tumors). At the time, they were horribly disruptive and inconvenient, with a much longer recovery period than a myomectomy: I thought, each time, that I'd do almost anything to not need one again. Yet now, as an adult, I had to think long and hard to remember exactly how many I'd experienced. Over the long haul, I did what I needed to do, and I kept moving forward: what seemed like more than I could handle in the moment was exactly enough to get me to the next step. As much as I hate surgery, I know that the right choice for me involves that same long-term focus: if having two surgeries is what it's gonna take to make me comfortable with the choices I've made for myself, then that's a fair price.

Those are just my thoughts, though. Mainly, if I were to advise you directly, I'd say get something quite detailed from your second opinion (MRI or such like), and try if you can to get someone who is very comfortable doing myomectomies, even if you don't want one. If the person who can easily handle removing just the fibroid has the honest professional opinion that more than just the fibroid needs to go, that's something worth listening to. Yours is actually probably small enough for UFE to make a significant difference (for me, a remaining dead fibroid that's only 15% the size of Way the #$@% Too Big is still, er, Way the @#&^ Too Big).

I'm sending you best wishes for good thinking and strong healing!

	Quote:
Originally Posted by 10ssista I am so afraid of making a bad decision that I'll regret

Dear 10ssista:

Kudos to you for seeking out a 2nd opinion! Ultimately, you will have to decide what is best for YOU, because it's YOU who will be living with the results (good or bad). By researching & asking questions & weighing all the pros and cons, it will help you to find peace with your decision.... and help you realize that you are making the best decision with the information that you have available right now.

Nobody has a crystal ball or can predict what their future holds.

I hope you are able to find the right answers soon. I am sending huge cyberhugs

This is a wonderful site, but reading too much causes a great deal of confusion because everyone has such a wide range of experiences. After following this site for several weeks I opted to stay away from the question/answer portion until after my surgery. I stuck to the information and article sections only. Tracy[/quote]

I agree Tracy. My doctor actually recommended this site for further information on my options. When I started reading every one's experiences, I started getting somewhat overwhelmed. I am finishing up a book that was recommended on this site concerning fibroids which has been very helpful. I am making a list of questions for my doctor so I can decide which procedure would be the best option for me. If possible, I am leaning towards an UFE or myomectomy. The two largest fibroids I have are 6.5 cm and 3 cm. I also have a few very small fibroids. I am 45 years old and I have been on birth control pills for a long time. The pill has helped slow the growth of the fibroids. I figure if the UFE or myomectomy could buy me some time until I hit menopause, then I might be able to avoid a hysterectomy.

Hope