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Post by ouchy on Sept 7, 2006 10:02:39 GMT -5
Ah. Your doctor may be right. If money is a concern, you might ask your doctor for samples, especially if you are pretty much just experimenting to find the right dosage of estrogen. There are also programs in which you can get your medications for free if you qualify. Here is a website on receiving your medications at low or no cost (if you qualify) www.pparx.org/Intro.php
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Post by erzulie on Sept 7, 2006 15:19:14 GMT -5
I have read that in order for a hysterectomy to be effective, you have to have both ovaries removed, as well as ALL the endometriosis (it can make its own estrogen), and that you should not start hormone replacement therapy for 3-6 months afterwards so if there is a little bit of endometriosis left it might die out.
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Post by andie4405 on Sept 7, 2006 20:04:45 GMT -5
Thank you to all of you for your replies....This is truly a trying time for me....
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Post by Brendak on Jun 10, 2007 9:47:35 GMT -5
I had a lap. nine years ago and did nothing after to prevent endo reaccurance. My Dr. retired 5 years after. For the past three years I have seen the same Dr. I suspected that the endo had returned and have had all the original symptoms (pain with physical activity, pain with sneezing, very heavy periods, etc). Along with those symptoms, I have additional symptoms. nausea, bloody bowels, pain on left side and back, anemia, and more). I told my gyno about everything last year. She did a vag ultr. and found nothing. She told me to come back in one year (she said nothing about the possibility of endo reaccuring). I went back two months ago after the year was up and still had the same complaints. She did a endo biopsy and all was normal. She then suggested a hysterectomy because of the heavy bleeding during monthly cycle. She still said nothing about the possibility of endo. She suggested I see a GI doc. I saw him on Friday. He is the one who told me that I may have endo in my bowels and colon. I did not even know such a thing could happen. I am having a colonoscopy of Tuesday and my hysterectomy on Thursday. I do not even know if my gyn doc is going to look for endo. She just seems concerned about the heavy menst. bleeding. After reading some pf the threads here, I know that I have endo on my colon. I believe it may be on my bladder also. It may not be in my colon yet, but I do know it is affecting my colon in some way. Can I ask my Gyn to check for endo?
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Post by ouchy on Sept 10, 2007 19:18:32 GMT -5
Posted by guest user Courtney in another thread well i just left my gyno and he has me scheduled for a total hysterectomy in 3 weeks. i know that hes doinging because ive already been on lupron, depot, and have had 2 lapo's...so what other option is there? right? im just soooo freaked out by it. never did i expect to be 23 and having a total hysterectomy. just hoping to get some opinions and maybe a little support... i feel lost right now, i just cant believe its come to this!
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Post by Sarah C on Oct 4, 2007 13:42:15 GMT -5
I'm almost 30 years old and have suffered with endo since my first period at 13. Of course i wasn't diagnosed until my 20's. I had one lap and was put on lupron then depo provera. Both drugs were horrible on my body, and my lap was extremely painful (i had my period a week after and ended up passing out from the pain), and took me a long time to recover. Right now, I take the pill continuously so i don't have a period. I just can't face the pain and misery I was going through all those years. Sometimes I will have periods and they are just as painful as ever. Now i'm faced with a new misery, the side effects of the drugs. I'm also having problems with my bowel that i think might be related (i had endo on my bowel): my movements aren't the same, and are painful with rectal bleeding. I'm seriously considering a hysterectomy. I don't have any children, i'm not in a relationship and I seriously doubt i would be able to conceive naturally. At this point in my life I'm not ready to have kids, and probably wouldn't be ready until my mid 30's if i wanted them. How has a hysterectomy helped any of you? Do you think i should go through with it? i've asked for one before but i'm just told that i can't have it done becuase i might regret it later. That makes me so mad ,as if my only purpose on this earth as a woman is to have kids. anyway any feed back is appreciated
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Post by snapple on Oct 17, 2007 21:23:21 GMT -5
Sarah C,
I understand where you are coming from with asking for a certain treatment and feeling like you are not being heard. My doc is also intent on preserving whatever fertility I might have left. So I recommend doing the research into all the different avenues you can take to get the results you want, making that decision, and then repeating it over and over again to your doc until they get it. It might take a while, or a change of doc, but eventually s/he will see that you are serious and understand the weight of what you want. Good luck.
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Post by Faith on Nov 2, 2007 22:11:58 GMT -5
I havent a clue how to start my own thread so I will just reply to one. I am new to this site, I found it in a conquest for info about endo. I am a grateful mommy to 4 children. To my knowledge my issues are only about 3 yrs running, but the more i think about it the more it may have been longer. I will also be 26 on late Nov. I was diagnosed back in late 04 with PCOS, i had a 7cm cyst removed from the left ovary. Followed up by telling me I was basically infertile (that's why my newest little one is almost 2 now ;o) lol) My issues went into my pregnancy and right on through it, and continued the destructive path. Like most of you I was told multiple different "diagnosis" or simply treated like I was a hypochondriac. Kidney stones, PID, cysts, PMS, appendix (most popular), over active bladder, GI disorders, blah blah blah. I have gone through my fair share of ER trips and Dr's, as well. Like most of you , I am sure. I began my own research into my issues, becoming steadily worse over time, cysts were also becoming out of control, I was getting one every month, sometimes two. i recall a recent trip to the ER....first visit, found nothing, 2 days later went back, found a ruptured cyst, 2 days later, more pain found a second cyst, they seem to grow like magic beans, lol. I found out about Endo and asked my current OB, she tells me maybe but there is no cure and it's really not that bad for me, it will go away with time. HA....liar.... So my issues continue and finally I had enough this summer (my ER trips is what did it) Now i might mention that I lost my job during the first "segment" of issues, causing a 30k drop in our salary (we now make 27k for 6 people (...) and lost our insurance. I get up enough $ to go PAY in FULL to see an OB/GYN. Insurance benie's were scheduled to start 5 days later but I had a hard enough time getting this appt. I get in there and 3 1/2 hrs later, I come out distraught. Indeed, he believes it is Endo. I have 3 options to ponder lapo., Lupron or Hysto.... Tough but my husband and I are done having kids and I have to be in fair enough health to raise the precious young ones (all girls ages 7,6,4 and 1 1/2). We opt for the surgery. Then the real fun begins. We get denied coverage for this. We cant get state help and we are self pay patients. Grand. Fantastic. We already barely make enough to survive, let alone pull this much $$ out of nowhere. (I realize this is long, but I promise, I'm getting to my questions, maybe someone out there has had this happen, as sad as it is I hope not...) We apparently have an angel working in our behalf because a charity (Search America, Bless them) will be taking the whole hospital bill. Leaving us with Anesthesia, Pathology and the Gyno's. We take care of Anesthesia and Pathology. For some reason though we can't get our dr's to HELP with spreading out the cost so we can still get this surgery (I am seeing this as an only option after many other unsuccessful measures and procedures). My pre-op is Tuesday Nov 6th, surgery is Nov 16th. They Dr office wants $1,700.00 ON TUESDAY. :'''o( That's my entire months wages. Our rent, our groceries, our electricity, our gas, our phone, it's everything. I am not sure what to do. I thought maybe do Lupron, but the condition will still be pre-existent and it's alot of $$ and time to get on high risk (usually have to be on for a year before treatment on that condition can begin). Please, I am so scared. I don't want to do this anymore. I am in agony day in and day out. I have had issues today!! Less then a week after my dreaded monthly. I want to be able to raise my babies without needing to be in bed 2-3 days out of the month and 1/2 that time in pain. I want to go back to work so I can regain our financial crisis. I swear we have tried everything. Is there some advice out there? I finally got a diag. and quite possibly some relief but that may be too much to ask....... Regretfully and Saddened, Faith
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Post by marquetta on Dec 10, 2007 14:23:15 GMT -5
Hello, My name is Marquetta. I am 31. I had a hysterectomoy about 3 maybe 4 years ago. My doctor left one ovary so I would not have to go on hormones. Well I have been in severe pain for about a year now. I even start having a period again. The doctors have been giving me the run around. Well I went to the doctor last friday and looks like I will be having surgery again to remove my ovary and also a piece of cervix that my last doctor forgot. My new doctor wants me to try the drug lupor first but I've heard so many bad things about this. If you have any suggestions please let me know. My next appointment is on x-mas eve.
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Post by MrsC on Jan 21, 2008 16:45:33 GMT -5
Hello, can anyone out there give me advice about hysterectomies. I'm 29 years old. I have severe endo, stage 4 per my obgyn. I had a lap and a laparotomy in July 2007 because I had bilateral endometriomas on my ovaries. My doc said I have the worst case she's ever seen. She called it a frozen pelvis. I have so many adhesions that my organs are all glued together. So, she started with a lap and ended up having to do the big cut. My surgery took over three hours and since one of my uterer tubes was glued to my left ovary a urologist had to get involved. Anyway, I lost my left ovary to the disease but luckily my doc was able to salvage my right. (One ovary had a 9cm cyst and the other an 11cm.) I still wanted to try to conceive since I had just gotten married in April '07. This all came as a huge shock to me when she diagnosed me with endo, I had never even heard of it. So my doc gave me even more bad news when I woke up; you won't be able to conceive naturally, you only hope with be IVF. I told her we couldn't afford that so she told me to try for 1 year and then I would have to get on continuous birth control because she couldn't remove the endo from my right ovary completely and still leave functioning ovarian tissue. So as soon as we could after surgery we started to try on our own. I started charting and stopped drinking caffiene and eating chocolate completely. I started eating better. Three days before my regular scheduled pap (6 months after my surgery) I started to experience excruciating pain on my right side (where my ovary is). Upon exam my doc said she thinks its bad news, the cyst have come back so she ordered a sonogram. Yep my ovary is 8cm. and full of cysts. A 4 cm, 2cm, and several smaller ones making it a swollen 8 cm. I CAN'T BELIEVE IT CAME BACK THIS SOON! Now she tells me that I have no choice but to get a hysterectomy because of the severity of my endo and scarring. Please can anyone out there tell me if there is any other option. She said that if I'm opened up too many times I jeopordize my other organs so I need to do it now. A full, uterus, ovary, cervix! I do have any 8 year old daughter from my first marriage, she's such a blessing. I didn't realize how lucky I was to have her until now because doc thinks I may have had this a long time. I'm more worried about being on hrt for the next 20 years than not having children now. I want to keep my organs. Please any advise will be much appreciated. Sorry this is so long, I haven't joined any threads, this is my first and I have a lot I feel I need to get out!
Kat
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Post by staceys on Jan 21, 2008 20:15:19 GMT -5
Hello Mrs C and welcome to the board; I'm sorry that it's due to such unfortunate circumstances. I believe that others on this board can give you a more sound opinion than me, but I would say seek another opinion. Are you seeing a specialist? When I saw my regular OBGYN he said I may not be able to save my ovaries and that they may have to do a full cut. He was worried about my fertility since I don't have kids, so he referred me to a reproductive endocrinologist (thankfully). He saved everything and didnt' have to cut me open and I had Stage IV at that time, now my pelvis wasn't frozen like yours. RE specialize in fertility, so they are more concerned with keeping it in my opinion. Now, I'm not saying your MD is wrong, but with something this permament and your desire for more kids, I'd seek another opinion. Good luck and let us know what happens. Take care and feel well soon!
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Post by MrsC on Jan 25, 2008 11:41:25 GMT -5
Thanks Stacys I took your advice and I'm getting a 2nd opinion from a RE because my dr wants me to try Lupron for 3-6 months then get on bc continuously for the remainder of the time I have my ovary, however long that may be. She said the rest of my life but I don't see keeping it that long. That would be nice though. I'm afraid of Lupron, I haven't seen anything good about it online. Are you familiar with it? Anyone?
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Post by staceys on Jan 28, 2008 15:50:00 GMT -5
I'm happy to hear that you're getting another opinion. Let us know how it goes. As far as Lupron goes, there is a huge thread on it in the drug section. Some had awful experiences, others are happy with it. I posted my experience with Lupron in that thread; I don't want to get off topic here.
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Post by bixa525 on Aug 4, 2006 20:16:27 GMT -5
Has anybody successfully had a hyst and kept an ovary and been painfree and endo free since you did it? I am contemplating a hyst but would like to keep one ovary due to the hormonal problems so many women experience afterwards. I know the ovarys feed the endo but I have been told that some women do try this route and are successful. Anybody have any experience with this?
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Post by cstrickland on Apr 25, 2008 18:22:43 GMT -5
Hi, I wonder if there is anyone out there currently who has had or is soon to have a hysterectomy who could give me some info on what to expect. I've read all your older postings but wonder if anyone is afraid, as I am. I have a tentative date for 5/29/08 and feel I am about to lose it a little. I'm leaning for a total. Even though I thought I had dealt with my feelings of infertility years ago, as I am 44 and "reproductively challenged", I feel those old emotions coming to the surface once again.
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