Endometriosis

[~*Alexis*~]

I was just wondering if anyone has this and how you have dealt with it. What types of treatments...things like that. I have it but I am just coming to terms with it.

Thanks.

 

[sumbride]

I wanted to reply so you wouldn''t be all alone here! My sister had it but didn''t discover it until it was pretty advanced. At that point they didn''t have any options for her and she had a complete hysterectomy at 27! It was horrible! I was just 16 at the time she was going through this so it made an impression on me and I''ve kept up with dr. appointments to be sure I''m ok since it is genetic. My doctor also put me on the pill to keep it from developing. So far, so good, but I have heard that there are many treatment options now and what they did to her was very extreme. It doesn''t have to be a debilitating illness. Have you talked to your doctor about options?

 

[monarch64]

Alexis, sorry to hear you''re going through this! I have no personal experience with it, but I know my mother had it at one point and her doctor wanted her to have a hysterectomy. She went to a couple of other specialists who didn''t recommend her going that route...I would advise you to get a second, and third opinon no matter what. When my mom was "diagnosed" with it, that was like 20 yrs. ago, and she never had a hysterectomy, so I think there are differing opinions on what to do as far as treating endometriosis. I do know she had a D&C at one point, and early menopause, but I''m still not clear on her exact problems... please, please, please seek the opinions of more than one doctor and go from there. I wish I knew more, and had a better understanding of this ailment so I could help you. Hopefully others will see your post now that Sum and I have chimed in and will be better able to assist you... meanwhile, take care!

 

[Ellen]

I have it. I didn''t know I did until I had an ovary removed about 9 years ago. Once I found out, it did explain some pains I had that I could never figure out. My doc said the only thing he could do was go in and remove the unwanted tissue, but that could in turn cause scar tissue, so it was a catch 22 situation. He said it was not bad enough for him to warrant surgery. So we did nothing. I''m past child bearing, and it wasn''t really causing probs, like I said, except for ocassional discomfort.

To make a really long story short, a few years ago I started using a natural progesterone cream, and am pretty much symptom free.

 

[~*Alexis*~]

Thanks for the replies. Well here is my situation. I have been having problems with cysts since I was 16. Over the last few years they have gotten worse and the pain has gotten really bad. One year I went to the DR and they did a bunch of tests. It got so bad that they did an MRI and they thought that my appendics had exploded. it turned out a cyst has just burt. (still painful). Well the pain has gotten progressively worse over the last year and I have been taking my birth control and that is not helping anymore. So at this point they told me that if I want to have kids I have to have them before I turn 23. The thing that really stinks is that I am only 21 going on 22. Not engaged (yet!) not even close to getting married within the next year so its just a pain. the Dr told me that with my level it could escalate faster but if it stays at this pace I would probably have to have a hystorectomy by the time I am 25 or less. So it sucks....

I will get a second opinion, but I dont think its going to help much...

 

[Ellen]

Alexis, I''m so sorry to hear it''s this serious. I encourage you to get a second opinion too.

May I suggest some reading for you? I read this book, which is what led me to get on the natural progesterone cream. Well that, and the testimony of someone who was also using it. At the time, I had so many symptons (in the link I''ll provide second) that it was scary. And I''d had some of them since my early 20''s. None of my doctors seemed to care (nothing life threatening), so I became my own out of necessity. Not something one should have to do, but I had no choice.

If in fact, there is nothing to be done, you might try the natural progesterone cream, it can''t hurt you, might help. See what you think after reading. The book is a bit dry, but full of information about our bodies and how they work.

You may think you''re way too young to be near premenopause, but if you read his whole book, you''ll discover why living where we do, and eating the diet we do, can lead us there much quicker.

http://www.johnleemd.com/store/more_premenopause.html

Estrogen dominant symptoms, of which Endometriosis is one.
http://www.natural-progesterone-advisory-network.com/symptoms-of-estrogen-dominance.php


I hope this helps.

 

[~*Alexis*~]

Thanks ellen for all of the help and for recommending the book. I will go to boarders this week and see if it is in there. Its nice to know I am not alone. Its just sucks that I have not even had the opportunity to decide if children is what I want or not. I am still young. I should have at least ten more years to decide if I want them or not. Unfortunatly I cant wait long and alot of the hope and ambitions I wanted for myself may be out the window.

Thanks for all the help!

 

[AmberGretchen]

Alexis - first of all, I''m very sorry you are dealing with this. I was diagnosed with endometriosis at the age of 16 (I''m 24 now), and I had a laparoscopy to remove affected tissue two years later. I haven''t had a period since about age 17, because I''m on BC pills continuously now. My first thought is that you didn''t mention if you are taking your pills continuously or not - that made a HUGE difference for me when I switched and there are no known major side effects to doing this long term.

My second thought is that you need to see some other doctors ASAP. There are other options besides what they are giving you, and in fact, fertility is almost impossible to predict in cases of endometriosis (this from my Dr. who I saw a few weeks ago). Some of these options include: continuous dosing with birth control pills, laparoscopy or other surgery using lasers to remove growths (creates less scar tissue, may or may not be appropriate depending on your individual case), alternative hormone therapies, and I''m sure others I don''t know about that wouldn''t necessitate having a hysterectomy at such a young age, and might have increased odds of preserving your fertility until you are ready to make decisions about having children or not. I don''t know where you''re located, but seek out doctors who have specialties and/or experience in this to get their opinions (I''m in the SF Bay Area and I''m happy to recommend my Dr. here if you''re around here, or give you his contact info and see if he knows anyone near you). Try to find someone that you are really comfortable with and who keeps up on the latest research - they will be able to provide you with the widest possible range of options.

Again, I''m so sorry you are dealing with this, and I hope that my little bit of knowledge and experience is helpful to you as you think about how you''re going to deal with this.

 

[Odilia]

Date: 10/4/2006 10:38:24 AM
Author: Ellen
Alexis, I''m so sorry to hear it''s this serious. I encourage you to get a second opinion too.

May I suggest some reading for you? I read this book, which is what led me to get on the natural progesterone cream. Well that, and the testimony of someone who was also using it. At the time, I had so many symptons (in the link I''ll provide second) that it was scary. And I''d had some of them since my early 20''s. None of my doctors seemed to care (nothing life threatening), so I became my own out of necessity. Not something one should have to do, but I had no choice.

If in fact, there is nothing to be done, you might try the natural progesterone cream, it can''t hurt you, might help. See what you think after reading. The book is a bit dry, but full of information about our bodies and how they work.

You may think you''re way too young to be near premenopause, but if you read his whole book, you''ll discover why living where we do, and eating the diet we do, can lead us there much quicker.

http://www.johnleemd.com/store/more_premenopause.html

Estrogen dominant symptoms, of which Endometriosis is one.
http://www.natural-progesterone-advisory-network.com/symptoms-of-estrogen-dominance.php


I hope this helps.

I''d like to say ditto to everything Ellen said above. I''m sorry you are having this problem. I too have similar problems, and I have also found the book Ellen recommended very helpful. The natural progesterone cream can''t hurt and will likely help. This book gives a lot of insight into these problems which many doctors today seem unaware of.

 

[Efe]

Check out www.endometriosisassn.org.

 

[~*Alexis*~]

Thanks for all the help and advice- its nice to know I have someone to talk to!! I will look into things.

 

[Mara]

Alexis...this may already have been something you looked into but have you looked into laparascopy? I took a women''s health class a while ago...when I was in college but they said that this was the best way to treat endo if you caught it early and could keep up with it kinda thing. They use a laser to go in through your belly button to zap away all the cobwebs. Now granted this class was like 8 years ago but I just figured I''d mention it since it seems like a much better option than anything else too extremeThe one other thing I would recommend if you have not already, is getting a 2nd opinion. Your body and your reproductive system is too important to just take one person''s word on anything. See a specialist if you have not already.

Good luck!

 

[Kaleigh]

Alexis,
I am sorry you are going through this. I ditto what has been mentioned about 2nd and even 3rd opinions. I have also heard that laparoscopy can be a great treatment for this. Good luck, and big hugs!!!

 

[~*Alexis*~]

When I talked to the Dr last time it was brought up, however, I think in my case it would not work. my stage is like 3 boarderline level 4. They told me if they went in with the laser if would only create possible scar tissue and make things worse. I am making an appointment with a new ob/gyn this week to get a different view on things.

 

[Odilia]

Date: 10/5/2006 1:55:28 PM
Author: ~*Alexis*~
When I talked to the Dr last time it was brought up, however, I think in my case it would not work. my stage is like 3 boarderline level 4. They told me if they went in with the laser if would only create possible scar tissue and make things worse. I am making an appointment with a new ob/gyn this week to get a different view on things.

I don't know too much, but I knew a girl who was having trouble conceiving, and wound up having surgery, and she said there was a huge ball of endom. in there, and after they removed it, she had 3 children in the following 3 years! So there is hope!!!

Glad to hear you're getting other opinions from other doctors. But regardless of how advanced it is, and whether you need the lap. or full-fledged surgery etc., I'd still get the book Ellen recommended. It will arm you with more knowledge as you go through all of this, and things you learn from it might help prevent future recurrance, etc. or at least help your overall health.

Good luck!

 

[Ellen]

I agree with OFG. I can''t stress what a God send it was for me, I think you''d find it worth your while to read it.

And we''re here to talk any time you need to.

 

[justjulia]

Hi,
I did not have endo, but have read a lot about it through this great site that I found before my surgery. Don''t be alarmed by the name of the site, www.hystersisters.com , there are women there that talk about everything and lots of alternatives are discussed. I love the site and it has been a lifesaver for me.