Bad News – Recurrence

· by · in chronic pain, depression, endometriosis, fibromyalgia, grief, infertility. ·

Last week, I went for an ultrasound to check for a recurrence of endometriosis. I described that in my last post.

Then I got a call at work with results and bad news. I’m not even sure this post will make sense because I’m still feeling so upset.

I have endometriomas on both of my ovaries again.

What to say about that… I’m beyond disappointed. I closed the blinds on my office windows and sobbed on the floor. Once I could put myself together, I went home and signed out sick for the day. It’s not so much the endometriosis that I was crying about; it’s my hopes and dreams of having children. I know, I know, people with endo go on to have children and do just fine. That’s not the entirety of my story and reasons why it’s not likely to happen for us. This is just one more obstacle. Not to mention, this news sucks regardless.

I’m not that surprised since I’ve had symptoms that made me suspect recurrence, but I’m still very disappointed. I described my diagnosis in a previous post (https://snowdroplets.wordpress.com/2015/10/01/my-endometriosis-diagnosis/). In a nutshell, I was diagnosed in 2012 and had a laparoscopy to treat a severe case. I then did a 6-month hormone regimen to cause a temporary menopause. Since then, I haven’t used hormonal treatments because I was hoping to get pregnant despite all of my challenges. I never did have much pain from the endo (except one incident when I think a cyst burst, that one hurt A LOT) and haven’t had much pain since then. The lack of pain combined with my regular follow-up exams led my surgeon to hope a recurrence wasn’t happening.

But it is.

At my last appointment with the surgeon, who I love, it was a really difficult visit. I cried and told him how depressed I’ve been about not having children and he very strongly encouraged me to investigate more options and reconsider my options. I don’t think he fully grasps the difficulties of my fibromyalgia like the OB doctor did, but anyway, it stirred up my hopes again and my doubts about our decisions. From there, I was referred to the ultrasound and a fertility specialist. I’m also going to see a rheumatologist.

I don’t know how bad things are yet. I just got a call from someone I don’t even know at the surgeon’s office. I know there are endometriomas on both sides and nothing more.

My next appointment will be with a mental health counselor who specializes in fertility issues. Thank God! Oh, I hope she’s good. And then I see the rheumatologist. Then the fertility doctor. Then I go back to the surgeon and make some difficult decisions with my husband.

&43)4*#$&(_)Q93 857_@*(#_(*%&_(#$*&_%(^*&_( !!!!!!!!

I’m trying not to get too far ahead of myself. There’s so many questions to answer yet. Still, I’m afraid a hysterectomy is in my near future and no babies. At least not one I carry. I already started to accept that adoption was going to be the route for us. Working through that.

I’ll be okay. I’ll be okay. This is bad news, but I’ll be okay.

Sépulcre_Arc-en-Barrois_111008_12

Text Copyright Snowdroplets 2016.

Image: Detail from Entombment of Christ, 1672, in Saint-Martin Church in Arc-en-Barrois (Haute-Marne, France). Photo by Vassil – Own work, CC BY 3.0,  https://commons.wikimedia.org/w/index.php?curid=5009515  I am not comparing my tears to those shed at the entombment of Christ and I don’t want to be overdramatic. It is just such a beautiful photo and the tears fit my feeling today.

23 responses to “Bad News – Recurrence”

  1. I’m so sorry to read this news =(. I can’t imagine how you feel. I guess there’s nothing words could really say to make you feel better but I promise to remember you in my prayers. I wish for nothing but the best for you ❤

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    • Thank you so much! I appreciate that immensely. Also, I’m thinking about how all the steps I’ve been taking for my health are even more important now. I took a very long walk/hike today and it really helped.

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  2. At ever step in life where we lose something precious to us, we believe it to be the end of our dreams. I know, I have been there far too many times. I was luckier than you when it came to having children, but I believe the grief I felt when my first born died, to be not far off how you feel right now. You are grieving for the children you believe you will never have. That might be the case, it might not, but either way, you have to grieve right now. Don’t be hard on yourself, how you feel is the most natural feeling in the world, go with it, step through the phases of grief as they arrive, and life will return and go on. It always does. When you are ready, you will put this behind you and your life will continue, yes, you will remember, you will feel that pain again, but each time you feel it, it will be just that little less painful.

    People make the mistake of believing that grief belongs only to death, it doesn’t. Grief belongs where ever it turns up, all feeling belong, none of them are wrong, they are just what they are.

    I hope the counselor helps you.

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    • Thank you so much for this profoundly kind message. I continue to be amazed with the people I meet through this blogging experience. I think you’re absolutely right that this is grief. My challenge is in allowing it to be the huge personal grief that it is in a world that doesn’t really acknowledge chronic illness and infertility as such major losses. I hope to let myself process this all gently with compassion for myself (a challenge for me) without wallowing in it. Fortunately, I found a class/support group locally for dealing with grief, and I’ve been participating with my husband the last few weeks. It’s helped some, but this news and the decisions ahead of us in the next month or so… But we will eventually be okay. I don’t feel that but I know it will be true. Thank you again, bless you.

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  4. I wish I could be there to hold you, hun. And I am very glad you’re getting a referral to mental health specialist. Hoping he/she helps out. What does one say to someone who’s going through this crap? There really is nothing I can say that will ease your heartache and disappointment. I’m glad you shared it with us (thank you) and wish you the best in the upcoming appointments and decision. Much love, Lisa.

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  5. I’m so sorry.
    I understand about the endo. I’m going to take the hormones for six months too. I was told the other day I’ll never conceive naturally as there’s too much damage. And my husbands vasectomy reversal has failed. We would have to fund our own ivf treatment. It’s so hard and so few people understand… I just wanted to let you know, you’re not alone. Thinking about you xx

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    • Thank you so much. We are dealing with some very similar issues. I think these struggles are more common than anyone thinks yet there’s still a norm in society that keeps these things hidden and silent. I’m glad we can support each other. I’m glad you’re here 🙂

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      • Totally agree with you about hidden and silent. For example I look back on the few symptoms I had of the endo, and I’m so sad because if I’d had the awareness, I would have gone to the doctor. I just put it done to painful periods (in the extreme!) and ended up with what my consultant said was the worst case he had ever seen…
        And yes, support from others who understand is vital. Thanks 🙂

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  7. I understand your pain. I have a similar diagnosis and have a had a couple surgeries already. TTC for the last few years now (I’m 36 now) and have done everything I could do with my body, mind and spirit to get healthy. Going to try IVF now. It’s not easy, I’ll be honest, but you are not alone! I wish you all the best, my dear!

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  10. I’m so sorry. They are right about allowing yourself to grieve. However I would go one step further and say that after you’ve given yourself that time then I would remind you to take one step at a time. When looking at all the appointments and the discussions with family about choices and options it can be overwhelming to the point that you just feel exhausted. Then there is a sort of desperation. However of you can just take one step at a time. It can help. Try not to speculate or think of what the next docs gonna say. I know it’s hard but it helps.

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    • You are absolutely right!! I need to write up some new posts. So much has been happening. Lots of challenges, but taking things one step at a time is the only way to stay sane through all this.

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  11. This is just not fair. I am so sad when I read about everybody’s experiences.. one because they are so similar to mine that I can only imagine the pain and misery you are going through.

    Do you ever find that the doctors and different OB/GYN’s contradict themselves?

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    • Hi, thank you for your note and support. I haven’t heard very much contradiction regarding the endometriosis, but there has been contradictions regarding the fibromyalgia. My take on it is that some doctors are knowledgeable about it and others who are not so knowledgeable contradict them. Frustrating!

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