Scared newbie with severe endo. Concerned about losing ovaries and HRT

Hi, I'm new to the HysterSisters and scared and nervous.

I was first DX'd with endo in 2000. In 2007, I wound up with a grapefruit sized mass on my right ovary and a CA-125 of 600. A gyn/onc took my right ovary and tube -- no cancer.

In 2012, I had a mass on my left ovary, and a CA-125 of 1600. I had to find a second gyn/onc who would agree to a cystectomy if this wasn't cancer ... It wasn't, so I retained part of my ovary.

Now I have a third mass, and my gyn/onc, who I love and trust, says that it would be technically difficult to save the ovary again -- and that adhesions, etc. would make any subsequent surgery that much harder.

I don't think it's cancer -- this time my CA-125 is only 239. But I am only 45, and I have extensive endo, and I worry about HRT.

I also worry about the side effects. Already I've had hot flashes periodically throughout this year, and I can't imagine it being worse -- I've been told that surgical menopause is worse than the gradual tapering off that your body naturally does. My mom did VERY poorly after her hysterectomy ... I'm worried I will be the same.

My gyn/onc wants me to start HRT within 2 weeks of the surgery -- that seems to defeat the purpose of removing my ovary. Also, I have extremely dense breast tissue, so that's worrisome. And my endo is extensive ... So getting rid of the ovary might not fix the problem if I take HRT.

What will it be like after the surgery? What can I do to help the symptoms? So many women have told me, "Oh, I'm fine -- it didn't make a bit of difference," and then I question them and find out they still have their ovaries.

I've tried so hard to keep this ovary ... Tell me this isn't going to be as hard as I think?

Hi SoOverEndo to HysterSisters!

You do have much to consider regarding your ovaries, HRT, and your endo. Here are some articles that may help:
Should I Keep My Ovaries or Not if I Have Endometriosis?
Endometriosis and HRT
Can I Use HRT after an Oophorectomy if I Have Endometriosis?
Endometriosis Recurrence after Hysterectomy

Speak to your doctor about your concerns.

I never had endo, but was thrown into surgical menopause at age 46. I was MISERABLE! My GP put me on oral estrogen and it gave me my life back.

As always, you need to make the decision that is right for you.

Thanks ... I have to look at this as TWO problems: one, can the ovary be saved, and two, if it can't, should I do HRT?

I'm grateful for your insight and the info from the links you gave me. I'll be sure to ask my gyn/onc these questions.

Now for the nuts and bolts details:

I don't believe my DH will be very supportive after surgery ... He wasn't after prior surgeries. It's not that he's a bad sort. He's just not a compassionate fellow when it comes to sick folks.

Is the surgery any worse than a regular laparoscopic oopherectomy? I need to know for planning. I've had three laparoscopic surgeries, so if it's like that, I know what to expect.

My DD has life threatening food allergies, so most of our food I cook from scratch. Eating out is not really an option for us. How many meals would you fix ahead?

And after my last surgery I gained a pants size in six weeks because I wasn't able to exercise. I'd SURE like to avoid that if at all possible -- any ideas when I'll be able to walk/jog again?

I assume by your question you are having laproscopic surgery.

I think it is worse, as you are having a major organ removed from your body, and there is some shock factor that is associated with it. There is also lots of internal healing to do no matter how they enter your tummy.

I will relay my experience, but my surgery was a TAH BSO - so open abdominal surgery with everything removed. My surgery was much more extensive, and I was 46 at the time of my surgery.

DH did most of the dinner cooking for the first two weeks, and did all the dishes. But I could help out some, and into the third week I was cooking simple meals. So, I would probably get a good one to two weeks worth of meals in the freezer - although space may be an issue. Otherwise, maybe you can have the meals be very simple.

It is not like you will be bed ridden. You will be moving around, but you will be VERY TIRED and sore, and will not have much stamina. You also will have lifting restrictions. I was home for the day by myself and did fine. I just did tasks in batch mode, focused on what was important, and let the rest go.

This surgery can be an exercise in patience...

Thanks!

Yes, it will be using the robot ... Last time in addition to having the cystectomy and partial oopherectomy, they also took my appendix (endo on it) and biopsies from my bladder wall and peritoneum.

I did not address your other question before (I got to focused on the first part), but will do so now...

They will get you up and walking probably the same day of surgery. They will also want you to be walking brief but frequent walks during your recovery. This helps you heal, and you can slowly increase the distance you walk. Jogging will come later, but walking is very good for you. You can talk to your doctor about when you can jog. Just a word of caution, learn when you have hit your halfway to too-tired-point so that you can get yourself home.

I am an avid speed walker. It took me about six to nine months before I was walking my pre-surgery pace and distance.

Big thanks! I remember feeling soooo tired so much of the time last time.

Yes, healing from surgery can really take it out of you. That was one of the big surprises for me was just how EXHAUSTED I was after the surgery - much more so than any other surgery I had. Also, it took a long time to regain any stamina. Even 10 weeks after surgery I would reach a point where I just had to go home because I had hit a brick wall.

This just take time......

	Quote:
Originally Posted by SoOverEndo My gyn/onc wants me to start HRT within 2 weeks of the surgery -- that seems to defeat the purpose of removing my ovary.

Not exactly. HRT tends to be a lower amount of hormones than what your ovaries produced. As such, for some women it is not an issue even with endometriosis. But it's actually a bit complex as there are a lot of variables to consider and no HRT does not mean no endo but it can mean new and serious health concerns.

The key for treating endometriosis is having the existing endometriosis removed. As long as there is endo, there is potential for it to be a problem with or without ovaries or HRT. For one, it can create its own supply of estrogen and there are a variety of ways to introduce estrogen to the body without HRT.

There are women with ovaries (I am one of them) with no issues with endo once excision of the implants was done by a skilled surgeon. On the other end of the spectrum, there are women with no ovaries and no HRT who still have endo symptoms.

Complicating the whole thing is how critical estrogen can be for overall health. Without it, you can suffer physically, mentally, emotionally, and sexually because estrogen aids in health from head-to-toe.

Thus, those of us with endo are in a tricky spot. We have to find a knowledgeable medical team who can treat the endo, consider the endo, and also consider our personal and family medical histories to help us determine what is right for us. No two of us will make the same decisions, and even if we did we likely wouldn't have the same outcome because of all the variables involved.

Regardless of how much you love your surgeon, have you gotten a second opinion? Have you ever consulted with an endometriosis specialist?

Right now, there is still so much unknown about endometriosis that there is no perfect answer for what we should and should not do. Besides our own bodies playing a role in the outcome, the skill and knowledge of the surgeon can make a big difference, too.

Before heading into surgery, try to be as informed as you can be regarding your options and the possibilities. Then work with your medical team to make the best decision for you.

Thanks, Weiser,

I just don't think I can give up that ovary. Today has been REALLY bad, and I've had terrible doubts. I mean, why should I give up a perfectly good uterus, a perfectly good cervix? I have NO fibroids, never had an abnormal Pap smear.

I've always listened to my gut, and my gut says that I should keep that ovary.