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Looking for guidance Looking for guidance

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  #1  
Unread 11-05-2009, 12:31 PM
Looking for guidance

This is my first post and I am really hoping to find someone who has shared my experiences...

Sorry this is so long... I promise not be this long winded every time!!!! Just wanted to make sure I get the whole story out there...

I had my first child at 18. I was on birth control after I delivered and was on the pill for about a year. I struggled with side effects of the pill. I was extremely moody and became very depressed. After changing pills 4 times, my husband and I decided it was best to go off the pill and find alternate means of birth control.

At 21, I began trying to get pregnant again only to find it near impossible. I had several miscarriages and felt very dismissed by my gyn. She felt that the miscarrages were related to my hypothyroidism and there were no further tests.

At 23, I became pregnant and carried full term and had my son. Afterwards, I had an IUD placed, the copper kind. Things were good for about a year.

At 25, my periods were getting longer each month and more painful. Several of my friends had IUDs and all had experience heavy periods at some point, so I thought little of it.

By 26, things had spiraled out of control. I went to see a new gyn and explained my symptoms. I was having extremely heavy periods (1 pad wouldn't last an hour), clots the size of golf balls and was in horrific pain. I began missing work and having difficultly functioning at a normal level. The doctor assured me that the IUD was likely the culprit and I shouldn't be concerned. I could have the IUD removed, but I was terrified of trying the pill again.

I had done pretty good at keeping my symptoms under wraps. My husband knew I was experiencing heavy, painful periods, but was unaware of the extent. This came to ahead in August of 2008. He finally had seen what I was having to deal with and insisted I see a different doctor.

I went to see the new gyn immediately and was relieved when he told me his goal was for me to be able to live a normal productive life. YAY!!!!

He felt that the IUD I had placed was slipping out and sent me for an transvaginal ultrasound. This showed the IUD to be displaced. My dr removed the IUD and wanted to see how things were without the IUD.

After three months, my periods were still heavy with large clots and painful. My dr suggested the Mirena IUD, which was placed mid November 2008. This was horrible. My bled everyday... not always heavy, but not always light. I has beyond moody and slowly started becoming depressed.

I returned to the dr early January and had the Mirena removed. At this point, I was frustrated and very tired of dealing with this. My husband and I had already decided to not have more children.. mainly because of the pain of trying to become pregnant. I discussed option with my dr. He suggested a thermal ablation and using the new springs to prevent pregnancy. Because of my bad luck with IUDs, I was hesitant to use any more implants. We went with a traditional tubal ligation instead.

I had surgery in March 2009 and was during this surgery that my dr discovered I have endometriosis. My dr speculates this has been the case for years, in fact he feels this may even be responsible for the miscarriages I had.

Things were great after surgery. I had no more pain and was not bleeding. During my follow up appointment, we discussed future treatments and the word "hysterectomy" came up. This terrifies me on so many levels. I just don't think I am ready for that.

I still am not bleeding, however, this month the pain is returning. It is the same as before.. deep, stabbing pain that comes in waves.

I know my age (I am 28) plays into my lack of knowledge and I haven't really had an older female to turn to over the years. I am really hoping to find some guidance. I have an appointment schedule with my dr in three weeks. I would really like to be armed with the right questions and the confidence to be open about this.
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  #2  
Unread 11-05-2009, 01:44 PM
Re: Looking for guidance



You have come to a great place for information!

I had my hysterectomy for endometriosis at the age of 25 so there are a few things I can share with you about my personal experience and research.

First, I would suggest you learn all you can about hysterectomies and endometriosis. The site is filled with information and we have an extensive Resource Database. The more you know, the better able you can be to make the best decision for you!

Second, a hysterectomy is not a cure for endometriosis. Unless your uterus is what is causing your pain, removing it might not solve anything. Instead, the key is to remove the actual endometriosis implants. In my case, my surgeon cauterized what he could and left what he felt was to dangerous too remove--such as what was on my bowel walls. Thus, I had continued endometriosis issues for seven years after my hysterectomy until I had surgery with an endometriosis specialist who was able to excise the endometriosis.

Next, a hysterectomy is not a risk free surgery. I had complications that affected not only me but my entire family. So make sure you carefully weigh all the pros and cons before determining that a hysterectomy is right for you. I would suggest at least a second opinion and if at all possible, look for a doctor who has exceptional skills and knowledge when it comes to endometriosis. Maybe there is an endometriosis specialist in your area.

Has your doctor suggested a laparoscopy? Endometriosis can be removed during a lap and thus if endo is solely the problem, you could avoid a hysterectomy. Other options include Lupron, Depo Provera, aromatase inhibitors, pain management, and alternative treatment options such as acupuncture, homeopathic remedies, chiropractic care, etc.

When considering a hysterectomy for endometriosis, you also need to learn all you can about hormones and endometriosis. Some doctors feel that it is necessary to remove the ovaries of any women with endometriosis because estrogen stimulates the endo. However, this is not always necessary and thus, I have both of my ovaries. While the estrogen our ovaries produce can stimulate any endometriosis, that same estrogen is beneficial for our overall health. And the younger we are, the more important the estrogen can be.

If your ovaries are not healthy and/or you and your doctor determine that an oophorectomy is best for you, you need to discuss your ability to use HRT. Some doctors feel that if they remove all the endo they see, it should be okay for their patients to use HRT. Other doctors do not want any of their endo patients to use HRT as they are aware that endo can be tricky and hide and some could have been missed.

All of the information can be overwhelming so give yourself some time to wade through it all! Keep paper and pencil handy to keep a list of questions for your doctors. And feel free to post your questions and concerns here as well! If you have specific endometriosis questions, you can post those in our Endometriosis Support forum!

You are doing the right thing by researching and asking questions!

The only other thing I would suggest is that you keep a symptom diary. Be as detailed as you can be. This will help you and your doctor see a picture of what you are living with and can help you as you determine what is right for you!

  #3  
Unread 11-05-2009, 02:31 PM
Re: Looking for guidance

My doctor removed as much of the endo as he could during my tubal ligation and ablation. I am mainly concerned that the pain is coming back. Especially so quickly... I just had surgery in March.
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  #4  
Unread 11-05-2009, 04:38 PM
Re: Looking for guidance



Do you know exactly where your doctor removed endo and where he was not able to remove it? And how did he remove it? Cauterize? Excise?

It is possible that what he was not able to remove is now causing problems. Or, whatever he missed has grown and spread and is the issue.

On the other hand, there could be other issues going on. The pain could be a problem with your actual uterus. You could have adhesions from endometriosis and/or surgery. You may have some cysts or an endometrioma.

Keeping a symptom diary might help you and your doctor determine what could be causing the pain and the best way to treat it!

Another thing to keep in mind is that some women deal with post tubal ligation syndrome and that might be causing you some issues

in there and keep looking for answers! S
  #5  
Unread 11-05-2009, 04:38 PM
Re: Looking for guidance



Do you know exactly where your doctor removed endo and where he was not able to remove it? And how did he remove it? Cauterize? Excise?

It is possible that what he was not able to remove is now causing problems. Or, whatever he missed has grown and spread and is the issue.

On the other hand, there could be other issues going on. The pain could be a problem with your actual uterus. You could have adhesions from endometriosis and/or surgery. You may have some cysts or an endometrioma.

Keeping a symptom diary might help you and your doctor determine what could be causing the pain and the best way to treat it!

Another thing to keep in mind is that some women deal with post tubal ligation syndrome and that might be causing you some issues

in there and keep looking for answers! S
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