Hysterectomy or radical laparoscopy to remove endo?

Well, when I joined about 5 years ago I was told I should think about hysterectomy because of my endometriosis. I came here, read alot and somehow, life seemed to go on (I had had my 2nd lap by then and each time had the endo burned away). All of a sudden it's 5 years later and I'm in the same boat again. I had been complaining to my gyn for almost 2 years about pain, sexual problems (dryness, pain and no libido) and after switching my birth control pills a couple times we tried the Mirena IUD. I like it, stopped my periods altogether but pain is back much worse. My gyn pretty much gave up, said she wouldn't do any type of surgery, didn't even send me for an ultrasound to see if something was wrong. Obviously, that totally turned me off and I found a new gyn. He was recommended by two girls I work with and I've seen how wonderfully they did, both had hysterectomies. I did some research and found he is a very advanced dr and surgeon. In fact he was one of the pioneers of laparoscopy. After seeing him, he said I should have an ultrasound and decide if I wanted the endo removed radically or a hysterectomy. If I chose just a radical lap he would cut the endo out, not just burn it off so there would be a much much better chance of it not returning. I also explained the my husband and I did not want to have children (I'm 39) nor did I want to mess with periods anymore, they're painful and I'm used to my iud getting rid of them now.

So, fast forward two weeks to today. I had my ultrasound right in his office. The tech had a hard time finding my left ovary (what's that all about?), makes me wonder if it's attached to my uterus or something. The dr. showed me the pics and there seems to be alot of fluid in my uterus and cysts on both ovaries. He said the cysts are nothing to worry about but is sending me for a ca125 blood test just to be sure. He's guessing the fluid is from a burst cyst. He asked if I had any pain the past day or two..I told him I have pain everyday, some worse than others. He didn't seem happy about that answer, I think he wanted me to say yes, it was really bad yesterday so a cyst probably burst. I told him every single time I've ever had an ultrasound I've had cysts so they don't come and go, they're always there. He didn't believe me. Whatever.

Sorry this is soooooo long but I wanted to "get it all out". I told him for the past two weeks I've been doing tons of research, mainly on here reading like crazy and that I already came there with my decision. He said I should go home and think some more. I didn't want to. I want the hysterectomy. I'm tired of it. I've had two laps for endo, my gallbladder out, stomach surgery (to repair/remove a hiatal hernia) and my tonsils out all in the past 7-8 years. I'm tired of it. He said he was sure he could get me 80-90% better but just cutting out the endo but couldn't promise. If in a year or two it was back then I would need a hysterectomy. So, my thinking is why do I go thru this surgery again only to have to do it yet again in a few years? I know I will because I've been promised everytime that things will be better. Why not have the hysterectomy and be done with it? He would give me no percentages with this of course but said it was my decision. And from reading from so many of you it seems the odds are way better by having a hysterectomy. Also, he said he would leave my ovaries if they were ok or remove one or both if they were diseased. While I'm happy to not have to take HRT I've also heard this can be bad for endo. The doc says that there's a very slim chance the endo would come back if I kept 1 or both ovaries.

What I'm getting at is this...could someone help me here? I feel like everything is being thrown at me and while I'm ready for the hysterectomy and the good chance of my pain being gone. I'm hoping I can find someone that went thru this recently. Yes, I've read thru dozens of posts but sometimes feel it's better to get an actual answer to what I wrote. Thanks for reading, again I apologize that it's so long. P.S. - I'm calling the office tomorrow to tell them I want the hysterectomy.
ANDREA

Hi, My aunt had endo and a TVH in 01,they could not get to her ovaries and she is fine now- no pain or hrt which she will not take because of breast cancer in the family.

sorry it's not a first hand account. she's 58.
Helen

I wonder if because of her age that's why she had no further problems? I've read that once you hit your 50's your less apt to have problems. But, if she had a tvh only 5 years ago she was already in her 50's so guess (of course) what I read doesn't apply to everyone! Ugh. Thanks for replying so quickly. I hope I get a few more replies as well. I feel so lost right now!

Wow Andrea, I wish I would have went to your doctor instead of sticking with mine! Unlike your doctor, my doctor only gave me several options. We tried birth control and Lupron. He originally did a laparoscopy to diagnose the endo (and it was extensive, complete with chocolate cysts on both ovaries) but did not even try to remove any of it. After the Lupron and birth control (Seasonale) were ineffective, he recommended a hysterectomy. Keep in mind I am only 33 and have never had children. I didn't want to do something that drastic so I asked if he would be willing to do another laparoscopy to remove the endo first. He said it was too extensive and that he only reserved that surgery for women trying to conceive (I had told him I didn't want children). I went for a second opinion at the same facility (my insurance wouldn't cover me to see a specialist anywhere else, even the Mayo Clinic) and was told the same thing. My periods were always regular and never heavy, but the pain was excruciating during my periods and bad during ovulation. The rest of the month the pain was more tolerable but I had bowel issues. Still, I was desperate for relief and tired of taking Lortabs and Motrin all the time, and I couldn't find a doctor that would give me other options, so I agreed to the hysterectomy with removal of both ovaries. After saying yes to this, I had two weeks to prepare before the date, not a lot of time to think about the ramifications of my decision. I was not 100% ready. Five months later my quality of life is worse than before the hysterectomy. I was started on hrt right away (mistake #2) and have since been on three different kinds and all they do is make me sick (even the bioidentical ones), no matter what the dose or kind. I suffer from constant intense hotflashes, sweats, bad headaches that I never had before, depression and terrible mood swings, body aches, joint pain, nausea, vaginal dryness (that could turn to atrophy if not treated properly), crushing fatigue, brain fog (my memory is shot and even my thinking is screwed up), no libido whatsoever (at this point that isn't really a concern as I am too sick to care anyway), and guess what? The same kind of pain I had before the hysterectomy is back already, although not as intense except when I have a bowel movement, then it is excruciating. You see, my gyn did not remove the remaining endo off my bladder or bowels. He said it would die off without my ovaries. What he failed to mention is that any kind of estrogen, including hrt, can feed it and it will continue to grow. That is why many doctors will not even allow their endometriosis patients to take hrt for at least six months, if ever. However, some doctors will prescribe progesterone in addition to estrogen replacement because progesterone inhibits the growth of endometriosis. Had I known this, I would have opted to try the progesterone treatments before even having the hysterectomy. What doctors also fail to tell you is that your reproductive organs do more than just prepare your body for pregnancy. The hormones they provide affect every aspect of your life, from metabolism to thyroid function to memory to protecting your heart to protecting and replenishing your bone mass and much more. When those ovaries and uterus are taken away, you are getting very little estrogen, progesterone, or testosterone in your body (you do produce a small amount from your adrenal glands, but not enough to replace what was lost).

I don't mean to scare you here. I just think you should research every possible aspect of having a hysterectomy, both the positives and negatives, before deciding if this is what you want to do. I thought I was ready, but I was not well informed about hormones, hormone replacement, how this would affect the endometriosis, how the surgery would affect my body, especially at such a young age, what impact this surgery would have on other health issues in my life (hypothyroidism, depression, irritable bowel syndrome) etc...I also didn't take more time to fight to get every possible treatment for endometriosis before consenting to a hysterectomy. I may have benefited from taking progesterone or having excision surgery. Then I wouldn't have had to go through surgical menopause and it would have bought me more time to feel young and to prepare for a hysterectomy if it came to that. For some people surgical menopause is mild and not as bothersome as the pain they had before, but for many of us it is a very big deal. And if the endometriosis isn't removed at the time of the surgery, you may have more problems later if you decide to take estrogen replacement. A hysterectomy is not a cure for endometrosis. Some people do have permanent relief and go on to live fulfilling lives. Others continue to have problems. I met a 26 year old woman in my city at a local hair salon and I told her about my hysterectomy for endo. She went on to say she also had one for endo with removal of both ovaries 1 1/2 years ago, and she has had 2 more laparoscopies to remove more problematic endometriosis still growing inside her since then. She was also started on hormone replacement right away. For me, I am still facing the decision of whether to continue hrt so I can have some quality of life but risk of more trouble with endometriosis, or not take any hrt and deal with surgical menopause and the risks that come with it but not have to deal with endometriosis pain. Sure, I can try alternative ways to combat surgical menopause, like vitamins, antidepressants, diet changes, etc..and I have tried them and they aren't enough to compensate for the loss of hormones that my body needs.

You are smart to find this site and do as much research as you can before deciding. There is a lot of valuable information here, from articles to links to forums. Read them all! You may also want to consider reading some of the books offered at the online bookstore, such as "Sudden Menopause" by Debbie DeAngelo (who had a hyst herself due to ovarian cancer), or "What Your Doctor May Not Tell You About Menopause" by Dr. John Lee (this deals more with natural menopause but you can learn a lot about the hormones our bodies make and about estrogen dominance ((a common factor that leads to endometriosis for some women)). If your endometriosis is so severe that you can't work or function without painkillers, than yes, maybe a hysterectomy would benefit you. Just be sure you are 100% certain you are ready and willing to accept whatever this surgery brings. I know I am biased because I am having such a hard time since the surgery, but it is important for you to get a full spectrum of women's experiences with this. I only listened to the ones that said "this is the best thing that ever happened to me". So far it hasnt been and that makes it even more discouraging for me. Maybe with a lot of hard work someday I will feel somewhat normal again and be happy with my decision. For now I have to struggle with a lot of unresolved problems and new ones. I may even have to take another leave of absence from my job in order to recover to where I can function more normally.

Good luck in whatever you decide and thanks for taking the time to read my lengthy post!

HI Andrea!!! This is a really big decision to make and u have been through alot. It is so wonderful to know that we have this site to visit for questions.!!
I also wish u luck in whatever u decide. ( by the looks of it, u have and thats okay ) Do not apologize for your post, we are lucky that we can go to where we know people will respond!

Thanks so much Nature and Karebare. I've made my decision. My hyst. has been scheduled for Feb. 10th 2006 so I guess now I'll go post on that board. Not that it's great but it is good to see that not everyone comes out of this feeling great, etc. I have been focusing more on the good posts rather than the bad ones but Naturebound, you helped me to remember that although I feel optimistic, it still may not be the best solution. My doc is a teacher of laparoscopy as well I just found out. And knowing he cuts out the endo instead of just burning it I too believe him when he says I have a much better chance of it not returning and my ovary/ies not making it worse. Maybe a stupid question but depending on how bad you feel, maybe it would be worth it to talk to him and maybe travel to meet with him? I feel so bad that you have to go thru this and definately understand. I too did Lupron and birth control with no periods. Right now I'm on the Mirena IUD and have no periods with it. I'll miss my little "t" in my uterus! Maybe he'll save it for me? If you want to talk please feel free to contact me. I'll look into those books you told me about. I guess I'll be moving myself to the pre op board now!