TMM03
New Member
Posts: 32
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Post by TMM03 on Nov 28, 2014 23:10:32 GMT -5
Not the most thrilling news...for what it's worth, if I was worried about preserving everything, I'd probably want to know 2 things: is there an endo specialist in the area who could do the surgery with preservation in mind? And, what is our backup plan if the Lupton doesn't go so well? If you've done reading and don't like what you're hearing about options, the doc should be professional enough to explain (in detail) the pros and cons of more than one course of action.
Of course, I'm sure you already know this. But I know how much it sucks to go through what you did only to come away with so few options. Wish I could help!
Big hugs!
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Post by chibineko717 on Nov 29, 2014 0:47:26 GMT -5
I also suggest trying to find an endo specialist. Your surgeon does not seem confident to do another surgery.
I also had bi-lateral cysts that were very large and stuck together. They later fused to my uterus and bowels. I took lupron after my second lap by a crappy surgeon. She only drained my cysts and I was on lupron for 8 months. I had my cysts refill and burst at least twice while on the lupron. Lupron will not shrink cysts that are as large as yours would be. Apparently endo can create its own estrogen supply so it can keep growing even if you are on the lupron.
I hope you can find a specialist. Most specialists do non-invasive laparscopies or use a daVinci robot. I have had my cysts removed and endo excised with an endo specialist (uro gyn) and general surgeon.
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mskim
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Posts: 28
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Post by mskim on Nov 29, 2014 9:21:37 GMT -5
thanks, gals. I'm very confident in my surgeon's abilities as he really is one of the best in the area...I don't want to seem defensive on that topic, but I really do trust his judgment. He is an amazing doctor and has a tremendous respect for preserving as much as he can, without being unrealistic. He told us to take some time to come up with questions for him before making any decisions...my head is just spinning right now and I don't even know what questions to ask.
My first desire is to curb the lengthy periods and heavy bleeding I experience. The pain, while some days are a lot worse than others, isn't as big of a concern for me - I don't seem to have as intense pain as many of you do, amazingly enough. And as much as it hurts to say this, fertility is kind of on the back-burner. I mean, he's, it would be wonderful to have kids on our own, but there are definitely other options for that. My concerns about having the surgery are 1) going through it and the end result being a hysterectomy or the realization that fertility is out of the question, and 2) if I have a successful surgery, is my body even capable of carrying a pregnancy full term? I am such an emotional basket case that I know I couldn't possibly handle the loss if things didn't go smoothly.
As far as the Lupron, I think my questions are more about the duration of treatment and side effects...he said he'd to add back therapy to help balance the menopausal symptoms, but I am still concerned about the potential for bone loss, etc. Would I be able to take this for a while, then try another surgery to see if it may have helped things at all? Thinking out loud, I guess. Are there other drug options besides Lupron? I'm not keen on BCPs as ive gone that route before, but I'm open to thinking of alternatives and discussing with my doctor.
Again, I don't want to seem defensive - I really do appreciate the feedback and advice...it's just all so weird to me right now! Never in my wildest dreams would I have imagined I'd have to deal with something Ike this. We just take things for granted, I think.
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Post by chibineko717 on Nov 29, 2014 22:26:11 GMT -5
I was on Lupron for 8 months with add back therapy of 5 mg of norethindone. The add back itself is a form of birth control. I was on just the norethidone for a year after I stopped the Lupron. The Lupron did not give me too many side effects, but I am not prone to having my mood altered by medicines. I had side effects like hot flashes and headaches. I know that most other girls who took it had mood or depression issues as a side effect. If you are prone to those types of side effects from taking regular BCPs, then it might be worse on Lupron. The Lupron did not help with my pain, and I went to the ER twice while on it due to my cysts rupturing. It did stop my periods with the occasional break through. Most treatment only lasts 6 months because of potential bone loss. I did loose a little bone density while on the Lupron, but quickly gained it back. The shots are the most painful shots I've ever had. They stick the needle into to back of your upper thigh. There is the option of a monthly shot or a 3 month dose. Those who took the 3 month dose seemed to have the worst side effects. I think that I was just really put off about Lupron since my doctor kept pushing it even after the 6 months and doing a surgery the 7th month of my treatment. After she tried to give me a shot at 9 months, I dropped her as my doctor and filed a complaint. I later found out that the drug companies give doctors like my old one money and incentives to prescribe the drug. It was not covered by my insurance even though my doctor said it would be covered. The shots can be anywhere from $300 to $900 per shot. When you decide to do surgery, the doctor will make you sign forms for any organs that they have permission to take out. In most states a hysterectomy has to be approved by insurance and the patient. So if you want to keep your uterus, then you do not really have to fear it being taken out without your permission. During a few of my surgeries, the doctors put dye through your tubes to check your fertility. If you think your surgeon is good, then it is better to have an excision surgery before you start Lupron treatment. If your cysts are larger than 2 cm, then the Lupron will not help. The cysts and any endometriosis have to be excised before Lupron because they can rupture. I know there are other options like Visanne, but it has not been approved by the US FDA. There are also different types of treatment that can help that you might be able to find in the drug treatment forum. I can only give you advice from my own experience. I've had BCPs, Lupron, norethidrone, a clinical trial, and 5 surgeries. I hope this helps you. Feel free to ask any other questions.
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Post by Karen on Dec 2, 2014 18:46:42 GMT -5
Since your doctor is only comfortable proceeding with surgery if it's a laparatomy, and since his only other option is Lupron, what's the harm in getting a second opinion from a specialist? You can always decide to stick with your current surgeon, but based on what I've seen here, the most experienced surgeons with the best outcomes can typically come up with a better approach. I'm not asking you to doubt someone you have a lot of trust in, just suggesting you see what someone else has to say before you wind up with either a large incision / longer recovery time that you may not need, or side effects that you may not want. It never hurts to get a second opinion.
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Post by janelac on Apr 17, 2015 11:57:15 GMT -5
I'm new to this whole forum thing too, but I think you hit the nail on the head with one of your previous posts, mskim. I feel your anxiety about getting surgery. I'm waiting to see a doctor about scheduling my first laproscopy. And I have a lot of doubt about the value of surgery. It's not that the pain that I feel is debilitating all the time. It's that I feel discomfort and pressure all the time and some amount of gut-wrenching pain is peppered in there too. And the fact that it's not acute all the time makes me doubt myself. Is this a problem that's worth getting a surgery for? Is it really that bad? I think about the time and money that I'll have to put aside to have a laproscopy and I worry that it won't help and I'll just be stuck where I was before, minus a lot of money and time. So I just wanted to say that you're worth the effort of getting to the bottom of your pain. I also share your fears about Lupron. My gyno wanted to treat me with that, but I told him that I can't entertain the idea of going into fake menopause until I know that I have endometriosis. Anyway, hang in there.
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mskim
New Member
Posts: 28
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Post by mskim on May 26, 2015 15:38:55 GMT -5
Wow, I realized it's been a while since I've posted over here! janelac - so glad you understood where I was coming from!! How are you hanging in there? Did you get your surgery scheduled? I would definitely wait to be diagnosed with endo before starting the Lupron - just to make sure that's what the cause of your troubles are for sure. Lupron isn't for everyone - I wouldn't tell someone to rush out and ask her doctor for it, but I certainly would encourage her to ask as many questions as she could, and try to find balanced information on it - not just the negative horror stories. So, an update: As I said previously, my doctor discussed with us the options of either more involved surgery or trying the Lupron. After about a month of discussion between the doctor and my husband, it was decided I'd try the Lupron. I will be receiving my 3rd injection in the next week, and I have to say I feel abso-freaking-lutely amazing. The worst side effect has been a bit of mental confusion the first few weeks, and the hot flashes. But I actually FEEL GOOD again. I want to do things. I don't get tired as easily. We went to Florida last month while I was supposed to start my period and I SURVIVED IT. I did not have massive bleeding or debilitating cramps; I could swim and enjoy walking on the beach. I'd like to thank those who shared their experiences and input, and thanks for the concern of those who recommended a 2nd opinion or seeking a new doctor. I am super happy with my doctor, and I am pleasantly surprised with my experience thus far with the Lupron + Add Back. Only time will tell if this was the right move, but for now, I'm definitely enjoying a quality of life that I haven't had for a few years. We are still trying to grapple with the idea we most likely won't be having kids - but for now, we're taking it one day at a time, and enjoying what I've gotten back so far.
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Post by sunkissedpr1ncs on May 26, 2015 23:11:14 GMT -5
mskim Thanks so much for your update, especially your opinion on Lupron! I had a lap 2 years ago while I was in Phoenix and had 2 8cm endometriomas removed and a ton of endo and adhesions removed. The surgeon then wasn't a specialist so he just lasered everything and I was back in pain within a few months. My husband and I have been trying to get pregnant so that limited the options to reduce the pain. We moved to Houston last summer and I stated seeing an endo specialist here who I think is great! He did a lap on me about 6 weeks ago but said the endo was so severe he couldn't do much and I will need a laparotomy in a few months where he will also have a colorectal surgeon and urologist there as well. He said my organs are pretty much all glued together, the endo is invading my colon and vaginal wall, it's covering my appendix, etc. so I know he has a lot of work ahead of him!! He is going to be excising everything and he is a fertility specialist as well so he will be clearing out a blocked tube I have and helping do what he can so I can hopefully get pregnant! He has me on birth control right now and then I will do 3 months of Lupron before the next surgery. He says he does this with all of his patients that need a laparotomy as it helps to make that surgery easier. I've read such horror stories about the Lupron so it's nice to hear a positive experience! I had been on Depo Provera for most of my life as birth control (I think that must have suppressed the endo the whole time since I never had any clue I might have it until a few years ago) and I know most people hate it but I absolutely loooved being on Depo so I'm hoping it'll be the same with Lupron! I'm glad to hear you've got a good quality of life back now and will be praying that everything continues to go well for you!!
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