Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 I hope i didn't just send that email. Anyway I'm 24yrs old, no children. I used to thank God, for that. now I'm wondering if I'm being punished. Well about nine mths ago a doctor found a large fibroid about the size of a 16week pregnancy. The plan was for me to take Lupron for 3mths and then have myectomy preformed. Well nine mths later my fibroid has shrunk dramatically. But it still isn't small enough to operate. To make things worse the doctor said it looked like there was another small fibroid growing. To make a long story short it looks like another 6mths to a year. But this is one way to make your fibroids smaller, and you might not even need surgery. The Lupron has helped me a lot, the heavy extremely painful periods have been gone for nine mths. There is a down side to lupron it causes a few side effects, like hot flashes, and night sweats but its been better than bleeding like crazy. I hope i've helped you a little. I look forward to talking to you later. -Delle Heidi Stahl hoot@...> wrote: Hello. I need some help figuring out what my treatment options are. The preliminary results of my second ultrasound are that the fibroid(s) are distending my uterus similar to that of a 5-month pregnancy. As the technician so kindly put it, " Your uterus is basically one big fibroid. " So much for bedside manner. I'm 40, am not in a relationship, and don't feel strongly about trying to get pregnant. Does this necessarily mean hysterectomy? I thought I could just wait them out 'til after menopause, but they're growing pretty fast, and I'm starting to feel some cramping and pinching in the front of my uterus, in addition to low back pain that's similar to menstrual cramps. I'm also just tired a lot of the time, and tired of dealing with this. And today I feel particularly discouraged. Do any of you have success stories to share about non-invasive procedures with large fibroids? Thanks, Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 I hope i didn't just send that email. Anyway I'm 24yrs old, no children. I used to thank God, for that. now I'm wondering if I'm being punished. Well about nine mths ago a doctor found a large fibroid about the size of a 16week pregnancy. The plan was for me to take Lupron for 3mths and then have myectomy preformed. Well nine mths later my fibroid has shrunk dramatically. But it still isn't small enough to operate. To make things worse the doctor said it looked like there was another small fibroid growing. To make a long story short it looks like another 6mths to a year. But this is one way to make your fibroids smaller, and you might not even need surgery. The Lupron has helped me a lot, the heavy extremely painful periods have been gone for nine mths. There is a down side to lupron it causes a few side effects, like hot flashes, and night sweats but its been better than bleeding like crazy. I hope i've helped you a little. I look forward to talking to you later. -Delle Heidi Stahl hoot@...> wrote: Hello. I need some help figuring out what my treatment options are. The preliminary results of my second ultrasound are that the fibroid(s) are distending my uterus similar to that of a 5-month pregnancy. As the technician so kindly put it, " Your uterus is basically one big fibroid. " So much for bedside manner. I'm 40, am not in a relationship, and don't feel strongly about trying to get pregnant. Does this necessarily mean hysterectomy? I thought I could just wait them out 'til after menopause, but they're growing pretty fast, and I'm starting to feel some cramping and pinching in the front of my uterus, in addition to low back pain that's similar to menstrual cramps. I'm also just tired a lot of the time, and tired of dealing with this. And today I feel particularly discouraged. Do any of you have success stories to share about non-invasive procedures with large fibroids? Thanks, Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 I hope i didn't just send that email. Anyway I'm 24yrs old, no children. I used to thank God, for that. now I'm wondering if I'm being punished. Well about nine mths ago a doctor found a large fibroid about the size of a 16week pregnancy. The plan was for me to take Lupron for 3mths and then have myectomy preformed. Well nine mths later my fibroid has shrunk dramatically. But it still isn't small enough to operate. To make things worse the doctor said it looked like there was another small fibroid growing. To make a long story short it looks like another 6mths to a year. But this is one way to make your fibroids smaller, and you might not even need surgery. The Lupron has helped me a lot, the heavy extremely painful periods have been gone for nine mths. There is a down side to lupron it causes a few side effects, like hot flashes, and night sweats but its been better than bleeding like crazy. I hope i've helped you a little. I look forward to talking to you later. -Delle Heidi Stahl hoot@...> wrote: Hello. I need some help figuring out what my treatment options are. The preliminary results of my second ultrasound are that the fibroid(s) are distending my uterus similar to that of a 5-month pregnancy. As the technician so kindly put it, " Your uterus is basically one big fibroid. " So much for bedside manner. I'm 40, am not in a relationship, and don't feel strongly about trying to get pregnant. Does this necessarily mean hysterectomy? I thought I could just wait them out 'til after menopause, but they're growing pretty fast, and I'm starting to feel some cramping and pinching in the front of my uterus, in addition to low back pain that's similar to menstrual cramps. I'm also just tired a lot of the time, and tired of dealing with this. And today I feel particularly discouraged. Do any of you have success stories to share about non-invasive procedures with large fibroids? Thanks, Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Heidi, My fibroid tumors are the same size as yours. I am only 35 years old and the OB/GYN wanted to a hysterectomy, but I do not want one, and I will not have one yet. I was suppose to have the UAE last week, but insurance is giving me a hard time. Have you had your blood tested? You were saying that you tired a lot of the time maybe your iron is low. I know my was the other month and they put me on iron pills. Only you and God can make the right decision on what to do with your body. My tumors are pressing on the left ovary and my stomach. I have real heavy bleeding and big blood clots. Do you have the same symptoms? Take care of your self. A > >Reply-To: uterinefibroids >To: uterinefibroids > >Subject: treatment options for large fibroid(s) >Date: Mon, 21 Jun 2004 12:49:31 -0700 (PDT) >Do any of you have success stories to share about non-invasive procedures >with large fibroids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Dear Heidi, I am 44 yrs old and am finished having kids but I still didnt want anybody removing my body parts! Or risking early heart disease or early menopause! After a lot of research I decided on a myoectomy. That was June 2nd 2004 and so far I am extremely pleased with my results. I had one huge fibroid and looked about 5 to 6 mos pregnant. You might want to get some books and read up on your options. There are several that are very informative. Plus research on the internet helps too. The Hysterectomy Hoax by Dr. Stanley West (www.repmed.com) Sex, Lies & the Truth about Uterine Fibroids by Carla Dionne A Gynocologist's Second Opinion by Dr. H. (www.Fibroidsecondopinion.com) What ever you decide just make sure you have a competent Dr.! This is the only body you have. Good luck and God Bless. -- In uterinefibroids , " Heidi Stahl " wrote: > Do any of you have success stories to share about non-invasive procedures with large fibroids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Dear Heidi, I am 44 yrs old and am finished having kids but I still didnt want anybody removing my body parts! Or risking early heart disease or early menopause! After a lot of research I decided on a myoectomy. That was June 2nd 2004 and so far I am extremely pleased with my results. I had one huge fibroid and looked about 5 to 6 mos pregnant. You might want to get some books and read up on your options. There are several that are very informative. Plus research on the internet helps too. The Hysterectomy Hoax by Dr. Stanley West (www.repmed.com) Sex, Lies & the Truth about Uterine Fibroids by Carla Dionne A Gynocologist's Second Opinion by Dr. H. (www.Fibroidsecondopinion.com) What ever you decide just make sure you have a competent Dr.! This is the only body you have. Good luck and God Bless. -- In uterinefibroids , " Heidi Stahl " wrote: > Do any of you have success stories to share about non-invasive procedures with large fibroids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Dear Heidi, I am 44 yrs old and am finished having kids but I still didnt want anybody removing my body parts! Or risking early heart disease or early menopause! After a lot of research I decided on a myoectomy. That was June 2nd 2004 and so far I am extremely pleased with my results. I had one huge fibroid and looked about 5 to 6 mos pregnant. You might want to get some books and read up on your options. There are several that are very informative. Plus research on the internet helps too. The Hysterectomy Hoax by Dr. Stanley West (www.repmed.com) Sex, Lies & the Truth about Uterine Fibroids by Carla Dionne A Gynocologist's Second Opinion by Dr. H. (www.Fibroidsecondopinion.com) What ever you decide just make sure you have a competent Dr.! This is the only body you have. Good luck and God Bless. -- In uterinefibroids , " Heidi Stahl " wrote: > Do any of you have success stories to share about non-invasive procedures with large fibroids? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2004 Report Share Posted June 21, 2004 Delle are you saying you have been on Lupron for nine months? e --- delle brown delle_brown@...> wrote: > The plan was for me to take Lupron for 3mths and > then have myectomy preformed. Well nine mths later > my fibroid has shrunk dramatically. But it still > isn't small enough to operate. To make things worse > the doctor said it looked like there was another > small fibroid growing. To make a long story short it > looks like another 6mths to a year. But this is one > way to make your fibroids smaller, and you might not > even need surgery. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Hi Heidi, I am currently going through the same thing. I am 37 years old and going through something real similar. I have a large fast growing fibroid that is on the exterior of my uterous between the uterous and my right overie. I have the same symptoms as you plus some and am tired of just feeling bad. I was also plagued with no energy what so ever. I have basically stayed in bed for the last month except when working or the kids needing anything. My GYN has been out of town and thanks to reading along with this group I decided to started myself out on a good multi vitiman and also an iron supplement. I have been on it for about a week now and over the last 2 days feel significantly better. (I would normally still be a sleep right now) But I do recommend getting with your doctor on what he feels you should do. I will be talking with mine today about treatment options for the fibroid and what I have already started on my own. I will let you know what he tells me just in case it will help you out although every fibroid seems to be different. Good luck, Kim Hello. I need some help figuring out what my treatment options are. The preliminary results of my second ultrasound are that the fibroid(s) are distending my uterus similar to that of a 5-month pregnancy. As the technician so kindly put it, " Your uterus is basically one big fibroid. " So much for bedside manner. I'm 40, am not in a relationship, and don't feel strongly about trying to get pregnant. Does this necessarily mean hysterectomy? I thought I could just wait them out 'til after menopause, but they're growing pretty fast, and I'm starting to feel some cramping and pinching in the front of my uterus, in addition to low back pain that's similar to menstrual cramps. I'm also just tired a lot of the time, and tired of dealing with this. And today I feel particularly discouraged. Do any of you have success stories to share about non-invasive procedures with large fibroids? Thanks, Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 e, that's correct I have been taking Lupron for nine months. After talking to the radioligist it seems that I'll be taking it fo another six mths to a year. I haven't had a chance to talk to my gyn since Fri. he went out of town for two weeks. What do you think about taking the Lupron for soo long? e pchelkajustine@...> wrote:Delle are you saying you have been on Lupron for nine months? e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Delle, My doctor did not rec. using Lupron for more than six months. I think it depletes the calcium in your bones. You may want to double-check if it is ok to use it for longer than six months. Good luck. delle brown delle_brown@...> wrote: e, that's correct I have been taking Lupron for nine months. After talking to the radioligist it seems that I'll be taking it fo another six mths to a year. I haven't had a chance to talk to my gyn since Fri. he went out of town for two weeks. What do you think about taking the Lupron for soo long? e pchelkajustine@...> wrote:Delle are you saying you have been on Lupron for nine months? e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Hi Amy, thanks I'm going to ask my doctor about that. I didn't think that was good for my body. My doctor told me the reason I am taking it for so long is because he trying to save my uterus. since i don't have any children yet. what bothers me is that he hasn't done any bone density tests yet. Another think that I was wondering is should I be doing add back therapy? Let me know if you have any info on this. I'm really not satisfied with the doctor that I'm seeing now. I'm moving to another state next week so I'm praying for a better doctor. -Delle Amy amyspider@...> wrote: Delle, My doctor did not rec. using Lupron for more than six months. I think it depletes the calcium in your bones. You may want to double-check if it is ok to use it for longer than six months. Good luck. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Delle wrote: The plan was for me to take Lupron for 3mths and then have myectomy preformed. Well nine mths later my fibroid has shrunk dramatically. But it still isn't small enough to operate. To make things worse the doctor said it looked like there was another small fibroid growing. To make a long story short it looks like another 6mths to a year. But this is one way to make your fibroids smaller, and you might not even need surgery. ************** Delle, once you stop the Lupron, your fibroids are going to start growing again. It is NOT a drug designed to help avoid surgery. The purpose for which the FDA approved the drug is actually to avoid or overcome anemia by ending the heavy bleeding many women experience with fibroids. However, while using it for the purpose for which the FDA approved it, doctors discovered that it also shrank fibroids. This is because it shuts down production of estrogen, and fibroids feed on estrogen. So if a woman's production of estrogen is stopped, her fibroids usually get smaller. It is not advisable to stay on Lupron for longer than 3 months due to a risk of osteoporosis developing. What Lupron does is put a woman into a drug-induced menopausal state. That's why the more common side effects, such as hot flashes, are the same side effects as women experience during menopause. As you probably know, osteoporosis, or bone loss leading to fractures such as the hip fractures many older women face, is also a side effect of menopause. Leonie " The line that divides Good versus Evil runs NOT between nations or parties or armies... but right down the middle of every human soul. " - Solzhenitsyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 At the risk of sound redundant.....When I first started doing my research I thought that I was going to have to have a hyster and take lupron to shrink my large Fibroid. In fact I was resigned to it. Even joined the hystersisters.com group. But I didnt feel good about it. Something in my gut (so to speak) just didnt feel right. Then I stumbled upon Dr. West's Website and found that any size fibroid can be removed via myoectomy. I was overjoyed as I really didnt want to have a hyster. He said to beware of Dr. who say too much blood involved in a myo. Which is exactly what my gyno said! I was so fortunate to find an excellent Dr. (Dr. ) from this group. My fibroid was huge and he did a horizontal cut and pulled than darn thing outta there. Thats not to say it was easy or that just any Dr. can do it. But I really beleive that if you have an excellent Dr., who does this procedure on a regular basis, that size doesnt matter. Remember not all Gynos are doing this procedure. And out those that do not all are as proficient as others. Once you make your mind up on what procedure you want, then find the best Dr. that specializes in that area. Even if you have to travel. One gal here traveled from her home in Florida to NYC to have Dr. West perform her myoectomy....now thats taking charge of you health! Dont give up hope like I almost did. I am fibroid free now for three weeks ) oh, and I still have my body parts. I had to travel to but only about 2 hrs. But I could have a closer Dr. in my area but he/she would not have had the same qualifications. So do your do homework and trust your gut. Also, Dr. said that if your Fibroid is peduculated (meaning it has a stem) that could possibly be done via laparascopy which is a lot less invasive. > > Hello. I need some help figuring out what my treatment options are. The > preliminary results of my second ultrasound are that the fibroid(s) are > distending my uterus similar to that of a 5-month pregnancy. As the > technician so kindly put it, " Your uterus is basically one big fibroid. " > So much for bedside manner. > > I'm 40, am not in a relationship, and don't feel strongly about trying to > get pregnant. Does this necessarily mean hysterectomy? I thought I could > just wait them out 'til after menopause, but they're growing pretty fast, > and I'm starting to feel some cramping and pinching in the front of my > uterus, in addition to low back pain that's similar to menstrual cramps. > I'm also just tired a lot of the time, and tired of dealing with this. And > today I feel particularly discouraged. > > Do any of you have success stories to share about non-invasive procedures > with large fibroids? > > Thanks, > Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2004 Report Share Posted June 22, 2004 Did you know that some of the best myo surgeons do not recommend Lupron use AT ALL. They find that it makes the fibroid " mushy " and harder to remove. A very good myo doc should be able to remove your fibroid despit the size. There are very real risks to the extended use of Lupron. > > The plan was for me to take Lupron for 3mths and > > then have myectomy preformed. Well nine mths later > > my fibroid has shrunk dramatically. But it still > > isn't small enough to operate. To make things worse > > the doctor said it looked like there was another > > small fibroid growing. To make a long story short it > > looks like another 6mths to a year. But this is one > > way to make your fibroids smaller, and you might not > > even need surgery. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 Hi Delle, I'm not sure about add back therapy. That might depend on your age and your body's natural ability to create calcium? It is a good question for the doctor. One thing I find helpful is writing down all of my questions, as they pop into my head, so that when I see or talk to my doctor, I have them all there. I bring the list and a pen with me onto the examination table so that when the doc asks if I have any questions, I can start rattling them off. You might want to consider doing this, if you are not already. You can ask your current doc, and then save the list(s) and ask you new doc after you move, too. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2004 Report Share Posted June 23, 2004 I think it is only supposed to be given no longer than six months. Glad you are getting another doc. gigi delle brown wrote: >Hi Amy, >thanks I'm going to ask my doctor about that. I didn't think that was good for my body. My doctor told me the reason I am taking it for so long is because he trying to save my uterus. since i don't have any children yet. what bothers me is that he hasn't done any bone density tests yet. Another think that I was wondering is should I be doing add back therapy? Let me know if you have any info on this. I'm really not satisfied with the doctor that I'm seeing now. I'm moving to another state next week so I'm praying for a better doctor. >-Delle > >Amy amyspider@...> wrote: >Delle, >My doctor did not rec. using Lupron for more than six months. I think it depletes the calcium in your bones. You may want to double-check if it is ok to use it for longer than six months. >Good luck. > > > > >MEETUP! with other local women who have Uterine Fibroids. http://uterinefibroids.meetup.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2004 Report Share Posted June 24, 2004 Dear Heidi, I had similar experience to 's. I am 48, had fibroid(s) that were mainly asymptomatic for probably 10 years but they grew slowly and steadily. Hoped to wait them out til menopause like you (and changed doctors to accomplish that after gyne who diagnosed them recommended hysterectomy at age 40). Finally -- no menopause in sight, really barely any perimenopause signs either, and mom didn't hit meno until age 55 -- uterus was size of 5-mo. pregnancy, I was experiencing bladder pressure and urgency, exacerbation of bladder hernia (cystocele), some GI symptoms... though no heavy bleeding (fibroid was entirely on the outside of the uterus). I spent a couple years trying alternative approaches, herbs, various supplements, castor oil packs, progesterone cream, the whole nine yards but that 'broid ignored all of it and just kept chugging along. So I decided enough was enough. Had my myo in December 2003. Turned out not to be what had looked like 2-3 very large fibroids on many ultrasounds -- but ONE HUGE " multinodular " fibroid, 27 cm (yup -- about 9 inches). I had requested no lupron, the surgeon was fine with that, did a horizontal bikini cut, had a pretty easy recovery and feel great now. Very glad I did it. It's still major surgery and not fun, not something to enter into lightly, but it was the right decision for me. Your life can get gradually more and more impacted by these things over the years and you don't even realize the extent of it til it's done with! So yes, to repeat what's been stated here over and over again on the list -- you CAN get myo for very large fibroids -- at ANY age; you don't need lupron to do it, you MAY be able to get a horizontal incision (no guarantees on that one though, depending on location and placement of the fibroid), and you can have a quick and trouble-free recovery and feel better than ever. I'm in NYC, I did not have Dr. West, went to a RE highly recommended in my plan and from what I've seen on the list, my experience and recovery were comparable to Dr. West's patients. Only diff that I can see was that my doctor did advise me that he would do a hysterectomy if there was uncontrollable blood loss, and my pre-surgery papers stated that (from what I've read Dr. West almost always promises this will not happen). But I had discussed my wishes, and my reasoning, with my doc, including with my husband (witness) present, and I was confident in his response and his ability to follow through, which he did. Point being that there are doctors out there who are very capable and also good listeners who will respect their patients' wishes, and not just a literal handful -- though there is a handful who are the " superstars. " So look into your options, and look for the right doctors. Sunny > > Do any of you have success stories to share about non-invasive > procedures with large fibroids? Quote Link to comment Share on other sites More sharing options...
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