The Decision is Made (I Guess…)

After months of agonizing, we finally reached a decision. My husband and I decided to go forward with surgery for my endometriosis that will include laparoscopic excision of the endo, and I am going to have my ovaries removed.

In some ways, I feel relieved to have finally reached a decision. In other ways, I feel terrible. I’ve never used the word devastated so much. It’s almost lost its meaning. I’m devastated over my health and over the loss of my dreams for creating our family easily and naturally, the loss of our ability to create a child from both of our genetic material. However, this is the best decision we can make with the facts we are faced with. I know I will be all right eventually and that we will find a way to have a family.

I have severe endometriosis along with some other health problems and was diagnosed with laparoscopy in 2012. I wrote about it October 1, 2015 here. Now, I need surgery because I have several large cysts on each of my ovaries and it appears that they are endometriomas yet again. They have essentially destroyed my ovaries and are part of the recurrence of my disease. If I don’t have surgery, they will probably continue to grow and risk bursting (omg pain), and can cause the disease to spread. I’d also continue to have pain and bloating and other symptoms that would keep getting worse until I finally would have surgery (and by then it would be a worse situation in my guts with various organs even more stuck to each other).

I need to have surgery to, #1, diagnose the problem. I could have other problems with my ovaries. Ovaries aren’t supposed to be this large and full of cysts (GoT fans out there, the night is dark and full of terrors much?). Anyway, I need to have them diagnosed and treated. They are nearly certain to be endometriomas again. Whatever they are, they can’t stay in there.

I also need surgery to treat the endometriosis. My surgeon will work with the Da Vinci robot to carefully excise all of the endometriosis tissue he can find. We were presented with an option to have conservative surgery again and keep my ovaries. This would mean I would not go into surgical menopause, would not have the side effects of that or require hormones, and that I would potentially retain some ability to get pregnant from my own egg. However, because of many obstacles in front of us, all the doctors we saw predicted less than 10% chance of success with my egg using IVF after this surgery. And I can’t have eggs retrieved beforehand due to the size of the cysts. If I kept my ovaries, the endometriosis would very likely come back and I’d be facing this situation again, potentially very soon when I would like to be working on starting a family.

If we were going to keep my ovaries and go forward with pregnancy, we’d need to get right on it for IVF after surgery. We are just not in a position to do that – physically, financially, logistically, etc. – especially with such a very small chance of success. My fibromyalgia is already such a struggle and our circumstances just won’t allow it. Some people might choose to try that path even with a small chance of success, and that is completely understandable. It’s just not something that can work for us, even though it tears at our hearts.

And so, my husband and I have decided to opt for laparoscopic excision surgery and oophorectomy (ovary removal) in July. We believe this is our best option because it will:

  • Diagnose the cysts on my ovaries
  • Treat the cysts on my ovaries
  • Remove endometriosis tissues/adhesions from wherever the darn stuff is hiding (probably all over)
  • Prevent further damage to my insides
  • Remove the ovaries and reduce the chances of endo recurring
  • Give me the best option for my health
  • Help prevent future surgeries
  • Improve my health so I can be better able to parent in the future
  • Maintain an opportunity for future IVF with donor egg since my uterus will stay
  • As a side benefit, removing the ovaries will also greatly reduce my chances of ever developing ovarian cancer

The surgeon says this procedure will probably be easier than what I did before. I’m hopeful that it will not take as long. He said it’s easier to remove the ovaries than to painstakingly dissect the endometriosis from all those delicate parts. He also anticipates less digging around and disturbance needed in the surroundings. All of these things could make for a similar or slightly easier recovery he said.

I will start hormone replacement therapy right away. As soon as the ovaries are removed, the body’s hormone production dramatically downshifts. If I didn’t start the HRT right away, I would very soon begin to have symptoms like hot flashes, night sweats, etc. Starting HRT will help prevent that. It will also help keep my uterus viable and protected in case I want to use it in the future (unlikely, but I’m so happy to have that option). The HRT also helps prevent other undesirable side effects of entering menopause at 38. I will use a bioidentical estrogen patch and progesterone pills and see how that goes. I’m afraid, and there are a lot of cons to this, but it’s our best option so we’re just going for it.

Other positives, no more periods. No more awful periods. Hopefully, I will have fewer migraines since my migraines are triggered by my period. It would be amazing if they would go away. I won’t be missing several days of work and life every month from all of these crap symptoms. I am hoping to feel better after this. I will continue to grieve and will have a lot to process. It’s going to be very hard for a while. Maybe my emotions will be more stable in menopause and I can get an upper hand on my depression and anxiety eventually.

Anyway, the decision has been made. I will be having surgery. I will be having my ovaries removed. I will not be able to have biological children. I will enter menopause (but we’ll try hormones). It’s overwhelming and my mind has been in a fog. I keep crying. It’s very hard to accept, but this is our best option and so we will do our best with what we have to work with.

Wood_anemone_flowers

 

Image: Wood Anemone, public domain image

Text copyright Snowdroplets 2016

 

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11 responses to “The Decision is Made (I Guess…)

  1. I am so sorry , I know how hard this is. One question, have they checked you for PCOS(polisystic ovarion sydrome), and also for auto immune issues, like lupus or wegeners? I wish I could take away the pain both physical and mental, but all I can do is offer you support anytime you need it. I hope you have some support, its not easy, but I can tell you this, with or without children , you can build a life, a happy one. Even though the wish for a child never goes away, , you don’t just get over it, as ppl think. Its taught me to take life a little slower, and I am learning to live with a grace I would of never known. I have learned I can live with a broken heart, I know mothers who have lost their kids, and I figure if they can go on, so can I. Sending you hugs and prayers,Lisa

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  2. I cannot fathom how difficult this decision was for you, but I hope you’re able to now find a bit of peace having made it. It can’t take away the hurt though. Keep reaching out for support, and know that everyone who follows your writing is wishing you strength!

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  3. I’m sorry… But I always find making the decision the hardest part.. After that I can move on more easily. Hope you feel the same and get some relief from having a plan forward. Hugs

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  4. Glad you have made a decision and that weight has been lifted, but sorry you have to think about this at all. Hoping the surgery and recovery go well and that you have lots of strength and support as you move forward.

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  5. You have a right to grieve your natural fertility. I lost mine in 2010 and was angry and raw for such a long time. Don’t rush the process and give yourself permission to go through each stage of grief without the ‘I should….’ Do it at your own pace.
    God willing, you will still be able to have the child you long for and be the most fantastic Mom in the world xx

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  6. I’m so sorry that you’re hurting ❤ but glad that you've made a decision, even if it's a horrible one to live with right now. Sending love ❤

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