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Post by jess84 on Sept 27, 2013 17:42:37 GMT -5
Hi everyone, I am so glad I came across this site. It seems very helpful and I am hoping to gain some insight. I have struggled with severe menstrual pains since age 13, I am now 28. It was soon discovered I had a large cyst on my ovary that had to be removed. My doctor was pretty certain that I had endometriosis. On August 26 of this year I had a laparoscopy and the endo (stage 4) was confirmed. They also took out my appendix because it was inflamed and swollen. Right now I am very torn on what to do next. My doctor wants me to start on Lupron. He actually says hes selective in who he gives it to. After doing some heavy research on Lupron, I have not heard one good story As bad as my menstrual cycle is, these side effects of Lupron seem just awful. I struggled with severe depression for some years, and I am much better now. The mood swings and depression associated with this drug scares me! A good friend of mine suggested I go on a gluten free/dairy free diet. It is a huge adjustment for me, but for the first time I feel like I am taking control of my health. I never realized how important nutrition really is. I am hoping my new diet will improve my symptoms. I am also scared if I don't take the Lupron what will happen to my endo? As of now, I have no scar tissue. My doctor was surprised. I just don't want scar tissue to occur in the future. Also, I very much want to have my own children in the future. My doctor said I can go on a low dose birth control now, to manage my endo. I like this idea better than going on the Lupron. I have just some crucial questions, I am hoping somebody can answer for me: Has anyone felt better from taking Lupron? Will the Lupron rid the endo thats there, or will it most likely come back? Is diet alone enough to help slow down my endo? Is it safer to take birth control, to manage my endo? Will it be harder to conceive if I don't take anything? If anyone can some shed on light, I will greatly appreciate it. Thank you so much All the best, Jessica
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Post by Karen on Oct 1, 2013 18:47:33 GMT -5
Hi, Jessica!
Shoot, I meant to reply to this before. Sorry! I check in on my phone many times a day but seldom have time to sit down in front of a computer to type a logical response!
Regarding Lupron, it really is a mixed bag. Some people get some relief and are glad they tried it; some get none and no stoppage of endo growth. Many get the side effects, though it appears the degree to which it affects people varies. If I recall, there's a study out there that shows Lurpon is no more effective than continuous birth control, but I couldn't tell you the source if I had a gun to my head. If you're really concerned about the side effects, it may help to write out a list of potential pros and cons and make your decision from there. Some doctors will offer antidepressants or add-back therapy in conjunction with it, but to me, having to take something to counteract something else seems a bit wrong. I'd ask you to put any other questions or comments about Lupron in the Lupron thread to keep it all together, k?
If birth control is an option and you're really concerned about Lupron, it might be worth a shot. It's easy enough to try and discontinue after a few months if you get no relief.
Diet plays a significant role in health and well-being in general, and I'm a huge proponent of it to help with endo. At the end of the day, diet changes can naturally balance your hormones, reduce immune reactions, and give your body the nutrients it needs to heal and function properly in the future. Drugs and surgery are needed in certain situations, yes, but they can't undo damage that you're doing to yourself by what you eat. And, really, you wouldn't question why a car doesn't work properly because you put crap for fuel in, but in our society, it's often the last thing people look at when it comes to health.
Going gluten/dairy free is a really good start. If you're ready to make some swift changes and really work on balancing your hormones at the same time, look into the Whole30. It's the only thing that got me completely gluten/dairy/sugar free, among other things, without the cheats that can undo all the good eating you did. Really, it's empowering to see what changes you can make in your body by giving it the nutrients and proper fat/carb/protein ratios that the body needs. It can take a while to undo the damage to your body, so it may not be as swift as drugs or surgery, but you'd be surprised how well it can work!
When I first made adjustments to my diet over 4 years ago, my daily pain levels dropped significantly within a week. I've had to do a lot of work since then, but it was an eye-opener that I can handle 90% of what's going on in my body with what I put in my body. In addition, I have a friend with stage 2 endo that changed her diet and when she had an unrelated surgery a year or two later, there was NO more endo. That's just an anecdotal story, but you'll be hard pressed to find a similar one with just surgery/drugs.
And regarding conceiving, there are two things that are potential roadblocks for endo girls - physical damage, and hormonal imbalances. Hormonal imbalances can be corrected through diet (or fertility drugs or fertility aids such as clomid, etc.). The physical damage can be treated with surgery, physical therapy, acupuncture, etc. We have many members in the past that have stage 4 but still went on to have kids. It's not necessarily a deal-breaker.
Welcome to the board, glad you found us!
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Post by chibineko717 on Oct 1, 2013 19:54:54 GMT -5
Hi, Jessica!
I was on Lupron for about 8 months a few years ago. Before then, I was on continuous BC. Lupron did not effect my mood, but most drugs do not have that effect on me. I was given add-back while I was on Lupron. I had a few hot flashes but not many other side effects. I know that those who have been depressed in the past tended to have bad mood side effects while on Lupron.
I had surgery a few months before I started and one of my doctors put me on it. Shortly after my third shot, I went to the ER since a large cyst had ruptured. It stopped my period, but I still had pain. The endo still grew and spread, so it does not stop the growth or spread of advanced disease. I have stage 4 as well. Lupron is mostly advertised to treat endo pain, it does not seem to due much to stop or shrink the disease. I felt better when I was on birth control. I still would have some pain, but I have not had a cyst rupture while on birth control.
Lupron was expensive as my insurance did not cover it. My doctor said that she would write an appeal to get the insurance to cover it, but that never happened. They wanted me to stay on Lupron longer, but I refused. You are usually only supposed to stay on it for 6 months at a time due to loss of bone density. I decided to stop Lupron treatment since it was expensive and I did not want to put my bones at risk since osteoporosis runs in my family and I don't want to start shrinking. I was put on Lupron at age 20, stopped at 21. I'm currently 25 and have had endo for 5 years. I have had 3 surgeries since I was on Lupron (4 total), with the endo spreading to my diaphragm. I'm glad I tried, because not many treatments have helped me. However, with your history of depression, I would be wary of trying it due to the side effects. Some girls also have bad mood side effects while on bcp, so you might have to work with your doctor to find what works for you.
You can try diet as well as different supplements. Probiotics, digestive enzymes, and activated charcoal have helped with the side effects of endo (not much relief for the pain yet). I will try serrapeptase once I find it in a local store. I'm currently on the Violet Petal trial which is a drug similar to Lupron but in pill form. I have not had much relief yet and I might go back to bcp/surgery once I finish the trial.
I know of many who have had children even with advanced endo. A lot of it depends on the physical damage to the tubes. Did the surgeon check to see if your tubes were clear during your surgery? My tubes are still open even though I have had many cysts on my ovaries, so I can still have children.
Welcome and feel free to ask any questions!
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Post by willow82 on Oct 2, 2013 15:13:25 GMT -5
Has anyone felt better from taking Lupron?Lupron helped me tons while I was taking it. The first month was really rocky due to the clinical flare, Lupron temporarily increases estrogen. However, after that I had a huge reduction in pain. Lupron bought valuable time to get back to something resembling healthy. I underwent pelvic floor PT due to muscle issues caused by the endo, was able to finally eat again, work, etc. I was on add back progestin, and an anti-depressant, I do have a history of severe depression. I did not have any severe side effects once I started the progestin addback. However, once the Lupron stopped, like within a week, my pain was back with a vengence, in fact my shots would usually start to wear off the last week and the pain would return. I did write an article on Lupron, with a lot of links and resources. Linked to the article are also journals from my experiences while on the drug. Will the Lupron rid the endo thats there, or will it most likely come back?No, and in my case it definitely did not. I had adenomyosis as well, and while my uterus did get a bit smaller and less inflamed, it was obvious the disease was still there. I had all visible endo excised a year ago, and when I had my hyst in August I had a small endometrioma, despite Lupron and continuous BC since my excision surgery. I was on the lowest dose of Lupron which likely led to the quick return of symptoms, and it is likely I didn't have a full shut down of gnrh. Is diet alone enough to help slow down my endo?For me it was not, and in fact my digestive symptoms were soooo bad, I couldn't even really do a healthy endo type diet. As fiber, dark greens, and other good for you foods were causing partial bowel obstructions. I did try an endo diet right after my surgery last year, and found it did nothing to change my outcome. Is it safer to take birth control, to manage my endo?I actually cannot take birth control for my endo, as my endo reacts to the estrogen in the pill. On combined BC I was having daily severe pain, digestive problems, severe constipation and ongoing partial bowel obstructions. Up until my hyst progestin only options were not any good for me as progestins would cause irregular bleeding, cramps, bloating, etc. I am working towards regular progestin only treatment since I had a hyst for the adenomyosis. However, I developed severe allergies and fatigue on Visanne Waiting to find out from the doc what we're going to try next.
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Post by willow82 on Oct 2, 2013 15:19:17 GMT -5
Also jess84, at your surgery did your doctor remove your endometriosis? Excision surgery for the endometriosis remains the best treatment option available. It takes an experienced doc to do the surgery right, as it is a very meticulous procedure.
Endometriosis, especially in the more advanced stages, can produce it's own estrogen, so drugs like Lupron may have a limited impact. It is important to surgically remove the diseased tissue to have the best outcomes.
Excising the endometriosis also been shown to greatly slow, and in some cases halt the further growth of endometriosis.
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