Endo + Hyst, what did you do for HRT? (baby mentioned)

So I am 40 years old, been dealing with endo and extreme endo pain since my first period. I am sick and tired of this disease. I am ready for hyst once my miracle baby is weaned. He is nearly 3, but no where near to weaning. I don't want to hurry him along, as he will be my only biological child... So I don't have hyst scheduled but fantasize about it ... think about it all the time. I just can't wait. I am so sick of having one good week a month and planning my life around pain.

My pressing question though is what do you endo gals do for HRT? Endo feeds on estrogen, so I do NOT want to give it any food or reasons to grow anywhere else (it is already on my bladder, uterter, etc)... So then what? Did you go with nothing? Do natural alternatives? What did your Dr. advise?

Do share all stories... This is my last question before I am fully set on going ahead with hyst as soon as DS is weaned!

TIA!

You are doing the right thing, asking questions and doing research before scheduling a hyst. Do keep in mind, a hyst does not cure endo. As endo can be very microscopic and is good at hiding, some can be missed and not removed. This in turn can grow from any estrogen whether via HRT, making its own estrogen, using stored estrogen in your body, or even using products such as black cohosh or soy.

Before scheduling a hyst, I highly recommend you seek at least a second, if not third or fourth, opinion about what is best for you. If at all possible, visit an endometriosis specialist. Another good choice is a reproductive endocrinologist. Some ladies find having a gyn/oncologist assist with their surgery helps insure as much endo as possible is removed. One of the most important things about having surgery for endo is having a doctor who is skilled at removing as much endo as possible.

You also want the right surgical procedure for you, and having more than one opinion may help you know what is best. I was able to have the LAVH, the least invasive hyst for my situation, as I had had a lap a few weeks prior to my hyst where most of my endo was cauterized. Some drs feel it is best for those with endo to have an abdominal hyst to give them more room to work.

Talk to your drs about the best way to remove your endo and how treat any endo that may remain after a hyst. If you will be having a BSO (which I assume from from the title of your post), you will want to ask how to keep your endo in check as much as possible while helping you deal with surgical menopause. Some ladies have few issues with surgical menopause, others have horrendous problems.

There is a vast array of opinons about treating ladies with endo after a hyst and BSO. Some dr's feel they are very skilled at removing all the endo so there is no problem with taking estrogen. Some feel that endo can in deed be missed so they have their patients not take any HRT for a space of time after their hyst, hoping any remaining endo will die off. Other drs have their patients take some form of progesterone to attempt to dry up any remaining endo, then allow ladies to start back on estrogen. Other drs feel it is best to never take any HRT if you have endo. It can be very complicated to decide what is best for you.

As I was young when I had my hyst, my dr and I chose for me to keep my ovaries for the benefit of my ovarall health. Thus, I have not needed HRT. However, my own ovaries have fed my remaining endo -- the microscopic stuff that was undetected and what was left on my bowel walls for safety reasons.

Here are some links that may interest you and provide some helpful information:

Hyster Sisters' Endo/Adeno Resources
EndoKnows
Progestesrone to treat endo
Endometriosis Association

You may also want to check out Endo/Adeno: Stories of Triumph over Pain, a forum where ladies have posted how they have dealt with their endo.

Another resource you may find helpful is ReliefInsite. This is an online pain diary that allows you to track your pain and print out information for your dr to review. I use it to track my current endo pain so my dr and I will know when I need to take the next step in dealing with my endo.

Many best wishes to you as you find the right answers for you!

Thanks for the reply. I have a fantastic endo specialist, best in the region actually. He is a godsend. I have never had a better Dr, so am not at all worried about the surgery. He did my last (4th in lifetime) lap...I will talk to him about this... as the reason I have not done it yet (was reccomended when I was 19!!!) was because I personally know many for whom a hyst only gives a year of relief and then they are back to square one with pain and now no one believes them because they have no parts. That would be a nightmare!!!

You are very right. That happens to many endo ladies. When the endo comes back after their hyst, their dr is at a loss. We see many ladies in this perdicament on the site. I am glad you are aware of the situation prior to your hyst, and glad to hear you were able to avoid a hyst at 19 yrs old. I was 25 at the time of my hyst, very young for such a life changing surgery.

s

Hi

I'm glad to see you have done your research and have a qualified doctor

My doctor did not allow any form of estrogen for the first 3 months. I was affraid of the endo coming back, so I choose to go as long as possible without using any estrogen. I made it through the first year and then my menopause symptoms became worse so I started using estrogen at the 1 year mark.

I have always used progesterone with my estrogen since it helps to inhibit the growth of endo. I have been using hormones for almost 4 years and so far I have been very fortunate that I have not had any problems with my endo since my hysterectomy.

Some women do just fine without any form of estrogen and some women have so many symptoms, they choose to use estrogen even though there is a chance of the endo returning. It is very hard to know in advance how you will respond to sudden menopause.

From everything I have read, the most important thing is that ALL the endo needs to be removed. If there is any endo left behind, it can continue to grow and spread again.

When there is endo on the bladder and colon, it can be very difficult to remove the endo from these delicate organs. I had to have a urologist present at the time of my surgery to help the doctor remove the part of my bladder that was covered with endo.

Unfortunately with endo there are no guarantees that a hysterectomy will cure the endo. There is a pretty high percentage that it will be successful if all the endo is removed, but much of that depends on where the endo is located and the depth of the endo.

Best Wishes on making your decision. I know it is a very diffficult decision to make when there are no guarantees.