How do you get endometriosis
It’s unknown what causes endometriosis.
i’ve been told by my doctor that it is usually genetic. but it doens’t have to be… i don’t know of any females in my family having it, and i was just diagnosed with severe endometriosis this week…
I was diagnosed with sever endometriosis a little over five months ago and am only 23. My doctor, a specialist, thought it prob was endo but had to do a diagnostic laparoscopy to find out for sure, which ended up being a lot more than he expected to find. There is a treatment “Lupron Depot”, which I am on my 4 and half month of, that is a miracle drug for endometriosis. I go in once every month to get this shot, this “treatment” normally lasts between 4-6 month depending on the extremety of the endometriosi. After the fact I found out my mom and some aunts had some of the extremes I had, but they had children earlier so it was never diagnosed. Which, endometriosis makes it difficult to have children, depending where it is, but once childbearing begins it cleanses all out. So, sometimes a woman can have endometriosis and not know. I always thought I had extremely painful and heavy periods, but, it ended up beignt more. Some women have endometriosis and don’t have pain. But… there is Lupron Depot that kills the endometriosis left from the laparoscopic surgery… it also rebuilds the scar tissues, if any, created by the endometriosis. Ask your dr about it. Hope this helped… Best Wishes!!!
I just wanted to clarify a couple things racheleua said. You can only take it for 6 months and it does not “kill” any endo that’s left. When you go off the Lupron the endo can come back. There are also risk factors with this treatment, so be aware. I had Lupron treatment for 6 months and then went straight onto depoprovera for about 2 years. That treatment totally changed me. I gained weight and was always exhausted and depressed. After I went off of it, a couple years later the endo came back with a vengeance. By the time I got in for surgery it was so bad - on pretty much every organ - the doctor said I would have died from kidney failure if I hadn’t gotten in. So just because you have these treatments does NOT mean the endo will be gone for good. Even a hysterectomy does not CURE endo. Also, I’m not sure if I understood this correctly but it sounded like you were saying if you have children you won’t have endo anymore afterwards - “but once childbearing begins it cleanses all out”. If that’s what you were saying - that is NOT true. I just wanted to clarify these things so anyone reading this is not misinformed.
I also want to clarify the post by racheleua concerning Lupron. You are sadly mistaken if you truly believe Lupron kills endometriosis. I can promise you that Lupron does not get rid of endo and you will have to deal with it again. I wouldn’t call it a miracle drug. It has a lot of side effects that can be very difficult to deal with. Any woman who is advised to take Lupron needs to be fully aware of these side effects before proceeding. Are you a Lupron drug rep in disguise??? Childbearing, if you can do it, will not cleanse out endo either. And why would you want to take a drug that rebuilds scar tissue?? Scar tissue/adhesions are painful and not what you want. I think you should invest more time in reading and researching endometriosis and educate yourself and stop posting information that may mislead someone new to this group who is looking for help with this condition. Endometriosis is painful and life altering… It is misdiagnosed and often ignored by some doctors…Please don’t contribute to the difficulties women face with endo by spreading false information on this forum…
Tigerlily and GRG, I appologize if I have offended either of you or placed “false” statements on the conversation board. I am aware that endo is not completely cured and childbearing doesn’t make it go away forever, also I am not a lupron marketer or any of the sort. I am new to the endo process, my story is not as extreme as most of you but I thought I would share it. Again, if I have placed information that is not true, I appologize, that is not my intent. I understand lupron does not work for all woment, but it is a rout to try in case it might work. My doctor said every woman has a little bit of endo, due to our cycles, but not all women have extreme problems with it. There is no cure for endo because it does come back, not always, but many times. When I said the part about childbearing I didn’t mean to say it cures it, but that it cleares it for the time. Now, if there are much scar tissues in the uterus and the egg is not able to stay connected to the uterus’ wall, there are miscarriages. I am not a doctor or a specialist, I was very frightened when I became aware that I had endo, especially since some of my mom’s best friends were never able to have children because of it. I merely wanted to encourage others going through this to press on and not give up. There is no drug that completely cures it, the Lupron just happened to be working for me, and my dr. said it is killing my endo. But again, it does not work for everyone… but I would think it is worth a try… what is there to lose? GRG and Tigerlily, I have not had the side affects you have had, so I appologize if I cannot relate. Every person reacts differently to drugs and treatments, but just in case it did not work for you both don’t shut it out for other women to try… It just may work for them. I am sorry that women have it a lot more than me, especially me knowing how badly I have suffered with mine. Again, I am not an expert on this issue, I can only speak through my personal/current experience with Lupron.
Oh, also… my mom and aunts have not had the extreme cramps and heaviness after childbearing… so, childbearing helped them… I am guessing. But again… I am no expert.
Racheleua,
I can tell you are new to endometriosis. It is a difficult disease and I hope you will take my advice and learn all you can about it. If your doctor told you that Lupron kills endo, then you need to find another doctor as soon as you can. Lupron can only shrink the endo, once it wears off, it will return. Having children is a personal choice. I wouldn’t recommend it as a fix for endo either. You should know that it may cause difficulty with fertility and should plan for this if you want children. I hope you understand that it is important for you to get information and all the education you can on this disease. There are a lot of doctors that do not know how to treat it appropriately and you have to be careful. I agree with you that there are drugs that are options for treatment of endo, but every woman is different and may not respond to the treatment. And many of the drugs dull the pain, but cause other side effects that make life difficult. Good luck with your treatment.
I’d like to clarify a couple of points just for the sake of making sure that anyone who is looking for information on endo is not given any incorrect information.
There is no cure for Endo - it can be surgically removed, it can be possibly reduced - by drugs like Lupron (which may cause other side-effects), and having children may “delay” some of the effects, but will not cure it.
I have 5 children - all my life I’ve had “problems”, but I wasn’t diagnosed with endo until 2 years after the birth of my 5th child. I finally had a hysterectomy last year, after things became so bad that I was in constant pain. However, the hysterectomy really didn’t help - and in some ways made matters worse. In august of this year I had another Lap - in Atlanta. (I went to "the center for endometriosis care, wish I had gone there sooner!).
They removed more endo, 4 staples that had been left behind during the hysterectomy, adhesions, and my right ovary (which was twisted).
I am still in pain, still cannot work, and have now been on full disability for over a year.
I say this not to scare anyone, but to point out that there really is no cure, and everyone is different. Some women can have severe endo and never feel anything. Other women can have just a small amount and suffer from chronic pain. Educate yourself on what endo is, the treatments that are available, and above all - listen to your body - THEN decide what the right treatment (if any) is for you.
Best wishes to all.
I would like to reitterate what Endofamily said. There is NO cure for Endo. Having children does NOT cure it, Lupron does NOT cure it. The best change at remission from the disease is surgery with an Endometriosis Specialist where they can excise the lesions. I too am a patient at The Center for Endometriosis Care (CEC http://www.centerforendo.com). Dr. Albee is my MD and he is fantastic as is his partner, Ken Sinervo.
Lupron is a bandaid. It only works to decrease symptoms while you are taking it, but once it leaves your system, the endo nodules go right back to their original size. They only shrink while on Lupron. Lupron also causes some very severe problems. Even with addback therapy, I was left with severe osteoporosis.
Hope this helps!!
I agree with many of the post. It is very very important that you educate yourself about Lupron before you take it. I have heard many more negative stories about Lupron than successful. However, there are some who benefit from Lupron, unfortunately I did not. I strongly suggest looking for reliable information about Lupron, how it works and all possible short term and long term affects it can have on the body.
There is a newly researched idea by a Dr. at northwestern university investigating treatment of endo with a drug approved to treat breast cancer in post-menopausal women. It is called Femara and is in the initial stages of testing. It is available at some research hospitals and I recently was written a script. the website www.kare2004.com has further information. I’m trying to get the word out there for those who did not find success with Lupron and other treatment methods.