The decisions before us

I began this blog already trying to come to terms with not having biological children due to a whole combination of factors including endometriosis and fibromyalgia. I thought I’d started to grieve and that I was moving towards a place of acceptance. However, recently, my husband and I had our hopes raised and then sunk as described in my last post. Now that our hopes are nearly entirely gone, the finality has brought a new level of grief as I realized how much hope I still had and how much it meant to me to carry our own biological child. Beyond that, we have new decisions to make that I was not expecting to make so soon.

We learned last month that we were extremely unlikely to ever conceive on our own and that my ovarian endometriomas are too large and that we can’t retrieve any eggs even if we were going to try IVF.

Then we went back to my surgeon, and we got a recommendation I really wasn’t prepared for even though I’d been worried that one day it would come. My surgeon recommended that I have my ovaries removed, a bilateral oophorectomy, along with excision of as much endometriosis as possible. He recommended keeping my uterus. Removing the ovaries will put me into “surgical menopause” at the age of 38. I have recurrent severe endometriosis that keeps forming large endometriomas on my ovaries. A lot of damage has been done to my ovaries as a result. They say there’s a very, very low chance of success with IVF at this point, even if we were going to try it (and we’re not in a position to do that). And there’s a strong likelihood of the disease coming back and forming cysts yet again, causing me more and more problems.

The doctor would have me start hormone replacement therapy for several reasons – one, to keep my uterus viable in case we later wanted to pursue IVF using a donor egg (not a very realistic option for us); and two, the health benefits outweigh the costs at my age. Still I guess there would be a major adjustment and I’m worried about all of this. Still gathering information about options, hormones, risks, benefits, etc.

It’s overwhelming.

I’m so sad to be facing the real end of my fertility and to learn there’s no real chance I will ever have a biological child of my own. Even though I thought that was already true, I now will not get to even have my irrational hope of a miracle. Although I will continue to hope for other kinds of miracles that I believe will ultimately happen for us. We’ll find a way to have a family somehow.

I’m nervous about the surgery even though it’s basically the same as the laparoscopy I had before and they took such good care of me and it wasn’t really that bad.

I’m afraid of endometrial cancer, but I guess this surgery reduces my breast cancer risk and, obviously, my ovarian cancer risk.

I’m so scared to be facing menopause and what comes along with it. I’m worried about hot flashes and “urogenital atrophy” and loss of libido and worsening migraines and vaginal dryness and depression and mood swings. At the same time, maybe I will feel much better than I do now! There’s just so much uncertainty. I think what scares me the most is if my depression were to get worse and if my sex life with my husband were to suffer. We’ve only been married not even two years yet and I’m just not prepared to give up our happy sex life too.  And I don’t know what would happen if my depression got worse. I’m so sad over this whole situation, but I’m trying to keep taking it all one step at a time and trusting for better times ahead.

So the decisions before us… I need to have some kind of surgical intervention because my cysts are getting larger and my endo is uncomfortable and painful, and the disease will just keep progressing without intervention. The cysts could burst basically at any time, which is extremely painful, and the disease is also more likely to spread if I do nothing now. I could have a conservative surgery like I did before and keep my ovaries. However, I would very likely be back in this same predicament a few years from now needing surgery again. And, even if I keep my ovaries, the chances of successful conception are very, very small at best even with IVF.

If I have the ovaries removed, it is more likely that my endo would be successfully removed with a lower chance of recurrence. I don’t really expect a cure at this point, but maybe I wouldn’t need another surgery after this? Or at least fewer. The fewer surgeries I need, the better. I take the risks seriously and do not want to have any more surgical intervention than necessary.

The next decisions are about keeping my uterus and what kind of hormones to try.

I’m going for a second opinion at the end of the month and then back to see my surgeon in June. I’m scheduled for surgery in July. I figured why put it off, and I think the answer will be clear by June. None of these are options I would have wanted. There are so many uncertainties and we just have to make the best decision we can and do the best with whatever happens. I don’t know what else to do.

This was tough to write. I’ve been meaning to, but dreading it at the same time. I don’t want to admit these things are truly happening.

If you’re reading this and have experience like this, any advice on hormones, surgery, etc. or experience you’ve had would be most appreciated. Even just advice on how to make big decisions when the options are all far from ideal would be great. I know one thing I am trying to do is stay grateful for the good things in my life and to just keep breathing and taking one step at a time. It’s really tough when I feel so heartbroken. I’m not even sure what to say.

Droplets_(8760037481)

Image: Droplets by Lacasse, Wikimedia Commons

Text copyright Snowdroplets 2016

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18 responses to “The decisions before us

  1. I have no experience of what you are going through, but you are so brave to share it. By sharing I hope it helps you through the process and know that you are educating and informing others of the emotion behind medical terms some of us will never be personally aware of. Thank you.

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    • Thank you very much. I think it is helping me to share. It’s hard, but I think it’s helping me process. I’m appreciating connecting with other people on their own journeys and becoming more compassionate through this whole experience.

      Liked by 1 person

  2. It tough, and it sneaks up on you when you lest expect it . I have learned this the hard way, due to health and money I will never raise a child. It is hard to make my brain even compute this, let alone my heart. I wish there was some right answer, to your questions, but there isn’t, all you can do is make the best decision at the time , with the info you have. What does your husband say about this ? Whats his imput ? I am now 46, so to old to even think about it. I would adopt if I could, but that isn’t an option either. I will tell you this, this is not something you get over, its like greif, it becomes a part of who you are. It ‘s not that you walk around sad all the time, but like lossing a loved one, you miss the moments you never have, such as seeing your child walk for the first time, etc. I am now at an age where most of my friends are becoming grandparents, not having children is not just the lose of a baby its the lost of a life time of memories. Saying all this doesn’t mean I don’t have a life, its just something you learn to life with, and build a different life, than the one you planned. As for your acceptance for this, it is something you will work through, its not something you finish, and no longer deal with. This mother’s day was harder than most, don’t know why, but this is what I wrote …..I hope this all makes sense as I have been dealing with a week long migriane, hugs , hang in there, you are not alone.. anytime you need to talk …………………………………………………..my post from facebook… How can I say what I feel, I would wish it on no one I know… I miss the moments that will never be….the first steps, the listening to children playing, just to name a couple . I also miss the things like mommy’s days out, mother day teas, or that silly card made with crayons . Most days I am okay, but mothers day is hard….there are no breakfast in bed, no silly little voices trying to not wake me up. It even effects adult things, like going out with other mothers to do things , like a spa day,etc. I will never understand why my life went this way, only that I now have to deal with it . It is a physical ache to hold a child I will never have, to feel a baby’s kick , beneath my heart. Don’t get me wrong I know its not easy, and that there are moments when parents want to quit, but I want it all. Now a lot of my friends have grand kids, I try to not think about what might of been….as I write this I am trying to remember to breath…….

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  3. I cannot imagine how difficult this is for you (and your husband, as your support). I do know how it feels to have your body work against you when you want something more than words can accurately describe. I sincerely hope you find peace.

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  4. My heart is breaking for you. I would totally donate for you if I could. I haven’t been in that situation so I have no advice on making those decisions. However, dealing with depression and my chronic pain, I can give some advice on keeping things going with hubby. The number 1 biggest advice I can give you is to communicate communicate communicate. Especially let him know that you’re worried about how you are feeling will affect your love life. I can’t tell you how many times I’ve cried to my husband about how I wish I were normal so he could have the sex life he should get. Sex is horribly painful for me and though my husband has figured out what works and what doesn’t for my body there are times where I’m gasping and crying out in pain. He immediately stops, I cry, he just holds me and tells me he married me for me, it’s ok. Sometimes I just bear the pain because I want to give him love. And often we just find different ways of being intimate without sex. Little touches and looks, cuddling, talking about what you want to do when you’re feeling better.
    Hugs. Good luck. Keep your chin up beautiful. Life isn’t over, it’s just different than you expected.

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    • Thank you! It’s such a wonderful blessing to find such supportive and understanding partners. In sickness and in health, I know we’re in this together with love and that gives me more peace of mind. I have those feelings of guilt that my hubby has to deal with all of my challenges ( even though I know I don’t need to feel guilty). It’s just how life is and he reassures me that he signed up for this life with me in good times and bad. How I got so lucky, I’ll never know!

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  5. Wow, it really is a lot to take in, so overwhelming. I’m so sorry, it must be so difficult to take these decisions. I’m thinking of you and hoping you’ll find your way through this very tough time. 💜

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  6. This is heartbreaking, I’m so, so sorry. I’m not sure what advice I can offer…I know that wading through these decisions means weighing up pros and cons, because there is no clear cut answer.
    I would definitely get that second opinion, and yes do research of your own, too.
    I think you’re so brave, sharing all this… I need to write a post, too but I’m completely avoiding the issue, mentally. Which actually sends me down into a depression, I’m sure. So don’t do what I’m doing! Talk it through with your husband, your friends if you can, maybe family?
    I think there is a way through, but you need to make sure you’re not alone. Because you’re not. (I may in fact be trying to tell myself this, too)
    Take care, snowdroplets, thinking about you xx

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    • Thank you so much for your note of support. Even though I would never wish these struggles on anyone, even my worst enemy, it helps to know I’m not alone. There will be happy days ahead for us!

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  7. Hi, how are you now? I am now at the stage you were and about to start prostap to start a fake menopause. So frightened but need to know how I will be without my ovaries. I am having one removed in march and the other has a small cyst too. We were hoping to try ivf but I fear the damage is already done. X

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    • Hello! I’m doing okay. I actually just posted an update a couple days ago. It has been really, really hard but we’ve come through the worst of it I think. I’ll be following your blog too and wishing you the best. If there’s anything you want to ask or chat about, I’d be happy to talk with you. I did a fake menopause after my first endo excision surgery a few years ago. I think it was several months on Danazol, if I remember right. The main thing it did was eliminate estrogen from my system to try to discourage the endometriosis from growing, as I understood it. I had hot flashes and night sweats, and things like that. It was hard. Now, I’m in surgical menopause for real. Both of my ovaries had to go. I’m on hormone replacement therapy now and it’s been tough. Anyway, I’m happy to meet you here in the cyberworld and am happy we can lend each other support!

      Liked by 1 person

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