Disheartened, Uncomfortable & Uninsured!

I'm grateful to find this online community. It's comforting to know that I'm not the only one going thru this and asking questions. Here's a readers digest version of the last 6 months, maybe someone else has experienced the same or similar circumstances. In February I found a mass in my abdomen. I went to see a nurse practitioner who informed me that I have a mass the size of a 5 month fetus. I know; you ask how I didn't know before? Well I have in the last 8-10 months lost 50 pounds and I assumed that my tummy was all fat. Moreover, I have not had any health insurance for 7 years and don't always have regular check ups. Well, 6 months and 5 doctors later I am currently waiting for my pre-op appt. Should be sometime next week and then surgery the following week. I'm not scared of the actual procedure but sad and bitter about having to make this decision. I have sharp shooting pains and lower back and hip pain from all the pressure in there. It's effected my bladder as well so I have to deal with those problems as well. The surgeon (she, and she looks like she's about 25y/o) has suggested TAH. I've lobbied to save the ovaries which she is in agreement with but I am really concerned about the removal of the cervix. I questioned her about it and she said it is standard to remove it. She also said there is no reason not to as it was once thought that removing the cervix decreased a woman's sexual pleasure but that is not true. So I agreed. But I read here that many women do experience loss of pleasure as a result. I'm now so confused about what to do and time is ticking and I've already agreed to it's removal. Additionally, I've asked for the TAH in lieu of the Myeoectomy becuase the Dr told me that there is a 40% chance of them returning and since I have no health insurance I could never afford to do this a second time. I can't afford to do it the first time and now all I want to do is crawl in a cave and cry. I'm 38 y/o and I was never able to get pregnant when I was younger and trying. Moreover, the results of my last sonograms indicated 3 fibroids with the largetest one about 6 inches long and portions of it are calcified which they explain means that it has been there for a long time. I guess that explains why I was never able to get pregnant. Why didn't my gyno catch it back then when I did have insurance and went at least once a year. I also have PCOS. All of these circumstances and others has made if feel that the TAH is the only choice I have. I'm having the surgert <Oops! Hospital name removed for your safety and privacy>in Miami becauset they are the only one's who will perform the surgery on those uninsured. I've been pretty **** strong up to this point but now I'm afraid I'm doing something terrible to myself and I'm scared. This is so unlike my personality and I realized I"m not as strong as I thought I was. Can anyone spread some light on me??????

Michelle,

Hang in there, before you know it the sisters will be storming this thread with all sorts of advice for you!

I kept my cervix so I can't be much help on that point. It does seem though that it is your body and your choice and just because you said yes, take it shouldn't mean that you can't change your mind? My doctor kept mine in as it had not given me any problems (pre-cancerous paps, etc) as she is of the mindset if it ain't causin' ya trouble, don't take it. She said that right off the bat, so I didn't get into real pros and cons of keeping it or not, so I'll leave that to someone else.

This is a big deal to everyone who goes through it, regardless of how or why. Its hard to be strong all the time through all of the decisions, doubts and worry (yes, perfectly normal) Any time you have any sort of nagging thought of any kind, just know we've all been there and if that doesn't work, come here and we'll tell you so ourselves!

Hugs,
Jamie

First, let me welcome you to this site. I am glad you found it as it is a wonderful place for information and support.

As for whether or not to take the cervix, I do know that part of the decision has to do with the type of procedure. With a full laparoscopic surgery, I think they can leave it. With a vaginal or lap assisted vaginal, I think they have to take it. For abdominal, I think they can do either.

I am not convinced that it makes a difference to sexual pleasure, but I am sure there will be other sisters along who can share some information on that. Mine is going, and I am not concerned. Still, if you are not comfortable having it removed, and if there is not a medical need to do so, speak up. You should feel comfortable with any procedure this major, and you have a right to insist that your wishes be honored.

On the no insurance front - I can certainly empathize! I am fortunate to have it now, but I was without it for 7 years myself and battling these issues without access to doctors or care was maddening. I made too much money to qualify for help, but certainly not enough to pay for the procedures the doctors suggested. As it turns out, it was a blessing in disguise. Yes, I suffered more years than I needed to, but knowing what I do now about my conditions, the procedures and drugs they wanted to give me would not have solved anything.

Hang in there and keep fighting until you have a decision you know in your heart is right. Good luck!

I'm going to have mine taken. Here is what I've gathered from this site as well as from my friends that have had the surgery. If sex was good before it will be again! With all the pain you are having it surely will be better just because you don't hurt in general! Are there any women around that you can ask face to face? I almost passed out when my neighbor told me the S-E-X was much better after She is a very prim and proper kind of woman. All I could think was, OMG, your shy enough to spell it but willing to share it. That one made me smile.
Good Luck
Amy

The doc said she wanted to keep my cervix since it has some important functions in the pelvic support as well as some other things. She said I would still need to get a yearly pap. She and I discussed our options together. She is also trained in lapriscopic surgery and since I have heart probs and am on blood thinners, she said doing it that way with a laser was safer for me. Perhaps you should talk to some people and see if there is a better doc for you? Just a thought.

Michelle,

When I went in for my pre-op, one week prior to surgery, I told my dr. that I wanted to leave the ovaries and cervix in place but that I would make my final decision prior to surgery. On the morning of surgery, I told her that I wanted everything removed because I had turned 52 the day before and was pretty certain that ovaries would be giving out any year now! When she got in there, she discovered that my cervix was strongly adhered to the lower bowel and she made the decision not to try and cut these two things apart as it would have prolonged surgery and there weren't any contraindications.

Unfortunately, 3 weeks later, she called to say that cancer had been found in my uterus and now we would have to redo the surgery in order to remove the cervix. Six weeks to the date of my first surgery, my gyn/onc made a second 12" incision about 2 inches above the original; the cervix was removed at this time as well as biopsies of all kinds of abdominal tissues.

I am 4 weeks post-op today and the recuperative process from the second surgery (I'm sure it's a cumulative effect, too) has been more slow than the first and I am constantly fatigued which was not a problem the first time around. Tomorrow, I'm supposed to go back to school (I'm a teacher) without kids and I know that I cannot work an entire day, even if it means sitting in meetings all day. At this point in time, I seriously wish my cervix had disappeared during the first surgery!

I had no reason to believe that there was cancer in my uterus prior to the first surgery; there were no masses, no positive endometrial biopsies or anything else. I'm not going to make a recommendation about taking out your cervix, but I wanted to tell you my story as one example of hindsight.

I wish you the best of luck in making your own personal decision.

Tay

I wonder what that means, "standard to remove the cervix," haven't heard that one before, and I think I would question her more closely on that. My cervix is gone, and I don't miss it a bit, but I had no choice about it. If it is an option for you and you feel you would like to keep it, question your surgeon further. There is always a chance that she will have to take it anyway based on she finds at surgery, so don't worry too much about this if it has to go. Good luck to you!

For me, the removal of the cervix and ovaries was optional and there was no doubt about my decision. If the surgeon was in there, I wanted them removed to avoid future problems. At 49, my ovaries would only have a few years left and I did not want to go through monthly cycles. As for the cervix the dr said if she could take it without difficulty she would, otherwise she would leave it. I do not regret the decision to remove everything and feel like a new woman since the surgery. I have been revitalized.

I had my cervix out without questioning. My dr. said it would be removed and since I have had bad paps in the past and every female in my family has had cervical cancer I didn't question whether to keep it or not. One thing I am confused about so may be misstating it(hopefully someone else will correct me if I am wrong) I believe fibroids can grow on the cervix. It is part of the uterus and the fibroids are able to grow on any piece of the uterus remaining. I think it is the same with endo.

Good luck with your decision and with your surgery!! Wishing you a speedy recovery!!

I had a myomectomy in 1992 for one large fibroid. Eleven years later 4 fibroids have grown. I opted for the myomectomy in 92 to leave my options open - I was 98% sure I did not want children and ended up not having any. Now I am waiting for my hysterectomy. Very sorry to hear that you don't have insurance, forcing you to pay the cost yourself.