Second opinions: endo, infertility, oophorectomy, hysterectomy, etc.

I read somewhere that anyone making a major medical decision like oophorectomy (ovary removal) or hysterectomy should get a second opinion. I am considering both of those things this summer to treat my severe recurrent endometriosis. We also have to factor in our strong desire for children and the difficulties we have there. This is my first time through such a huge decision, but I took that advice to heart and got a couple of second opinions.

I’m so glad I did.

I previously saw my family doctor, a rheumatologist, a gynecological surgeon, an OB doc specializing in high risk pregnancies, and a reproductive endocrinologist (RE). For my second opinions, I saw a second gynecologist and another RE. I asked my surgeon for a recommendation about who to see and went from there. I felt awkward asking for the recommendation, but doctors are used to this. It’s standard practice to get second opinions and they don’t mind. I also have a lot of trust in my surgeon so I trust his recommendations about good people to see.

My husband came to every appointment with me and I’m so glad to have his support. I also brought a notebook to take notes. As I begin to hear these things, I go into a kind of emotional shock and just can’t remember what’s said or keep it straight. Notes are crucial.

First, the OB/GYN.

I wanted to see an OB/GYN because he could tell me about endometriosis as well as answer some of my questions about pregnancy. We both liked the doctor. He seemed very intelligent and experienced. He did a great job explaining things to us and answering questions. I could definitely see going back to him in the future.

Things that stuck with me from the visit –

  • The decision all comes down to what we value most and how we feel about the various risks, benefits, pros, cons, etc. There is no one right answer for this.
  • He said it was an unusual idea to keep my uterus and remove the ovaries, but he could see where that might be the right decision for me.
  • As we all know, the definitive treatment for endometriosis is hysterectomy. He said that if it was most important to us to minimize the number of surgeries I need over my lifetime, I would want to have a hysterectomy. For my health, that would probably be the best option.
  • However, if it was most important to us to maintain an option for pregnancy, I would want to keep my uterus for future IVF with a donor egg. He said we should talk to the RE about any potential effects of removing the ovaries on that kind of pregnancy (we did).
  • He said that fibromyalgia was nothing to worry about in pregnancy. This part bothered me and I just decided to disregard his opinion on this because clearly he doesn’t understand fibromyalgia. He didn’t even ask me about my symptoms, how much pain and fatigue I have, how it affects my life, etc. He doesn’t know how hard it is for me already. Some people do just fine and I know it’s not a reason alone to avoid having children, but I also know it’s something we have to factor into our decisions. It’s not something that will be a piece of cake for every woman.
  • He said that of all the diseases and conditions that he treats, endometriosis is the one he personally would not want to have. He compared it to cancer in the way it grows and spreads, the difficulty in treating it, and the pain and stress it causes. He reiterated how difficult it is to live with and treat and, honestly, that made me feel better because it validated how hard this feels.
  • He also said that we were going about this decision the right way. He said we were asking the right questions, taking the right steps, seeing the right people, and gathering as much information as possible to support our decision-making. He repeated that we were absolutely doing this right. Those statements were such a kindness to us. I felt relieved and supported.

So after that visit, I felt very freaked out. It was great information, but the information seemed to push me toward a hysterectomy and I just haven’t been able to get my heart around that decision. I’m probably not going to pursue this IVF option and a hysterectomy now might be the best thing for my health. At the same time, I just feel like I can’t let go of the possibility for a future pregnancy. Not yet. My anxiety was very high – probably as my heart and head battled it out for the decision.

Next, the RE.

Yesterday, we saw a second RE. We wanted to see if she would confirm the bleak outlook we got from the previous RE we saw. And I had questions about effects of ovary removal. For starters, we really liked this doctor. She did a great job explaining everything and answering all of our questions. She approached us with compassion and made us feel comfortable and supported.

She reviewed our previous test results and went through each one with us. We so appreciated this. It was more thorough than what we’d heard before. My values were all good: anti-Muellarian hormone (AMH), follicle stimulating hormone, estradiol, and antral follicle count. Our male factor is not conclusive in her opinion. Because of all of the issues including my age, endo, surgical history, etc., she recommended IVF for us if we wanted to pursue pregnancy. She also reviewed the chances of success and various options available including donor eggs, embryo adoption, and infant adoption.

One of the big questions is whether I can even have eggs retrieved with these ovarian cysts.

So I got yet another transvaginal ultrasound. It’s funny that I don’t even really care anymore. Sure it’s strange and uncomfortable, but it just has to be done and it’s not that bad.

This is when we got the bad news confirmed. I have multiple large cysts – endometriomas – on both ovaries. I have very few follicles that she could see. I could not have eggs retrieved in this condition. She described the cysts as “intense.”

I put my pants back on and we met once more in the office. She confirmed the bleak diagnosis we had received before. Our chances of success with IVF and my eggs would only be possible after surgery and, even then, would be very low (<10%). She said some people would want to try and others would not. She would support us either way. For us, that is not a chance we are willing to take.

We asked whether having my ovaries removed would affect the chances of success for future IVF with donor egg, if we decided to try that later. She said it would not affect it.

It’s also possible that the endo will be improved after my surgery and ovary removal, and that would make conditions better for a potential future pregnancy, if we decided to go that route.

And so…

I felt really sad after our visit yesterday. I keep hanging onto these little irrational hopes and feeling disappointed, crushed. I so want things to be different than reality. I’m still just devastated that we are having to struggle so much to have the family we dream of. And I’m really upset about my health conditions and worried about surgical menopause.

Still, I felt somewhat relieved. I feel relieved because we got confirmation of the diagnoses and recommendations we’ve received, we got more explanation and more information, and we have more clarity about our decisions. It looks like ovaries removed, uterus stays for now, and I go one hormones after surgery. Then we see what happens next.

We make the best decision we can now with the information we have, with our values and needs of our hearts. Then we make the next decision the best we can, and the next one after that. We’ll have a family somehow. We’re already talking about getting ready for foster care, investigating adoptions, and surrogacy. I think we’ll get past this surgery and then start trying all of those options. We’ll plant all of those seeds and see what flowers.

Thank you for this forum to share my thoughts and get support. Thank you for your kind words. I hope that my story can help someone else in a similar tough place.

Wang_Hui_-_Peach_Blossom

Image: Peach Blossoms by Wang Hui, public domain

Text copyright Snowdroplets 2016

 

 

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12 responses to “Second opinions: endo, infertility, oophorectomy, hysterectomy, etc.

  1. I’m so glad you were able to get more information and guidance. Still such hard decisions to make but it seems you’re getting there, step by step 🙂
    Your post has reminded me that I need to seek more information about my own situation…I do tend to bury my head in the sand sometimes, especially when the emotions are running high. But you’ve made me realise that digging deeper is the way to go. Somehow I think I’m a bit more prepared now, to actually face all the possibilities, to really get my head around the situation. Thanks so much for sharing, I have no doubt that by planting all the seeds, you will achieve your dreams, one way or another 🙂 thanks for the inspiration!! Xxx

    Liked by 1 person

  2. I absolutely second your recommendation to be always get two opinions… I swear there seem to be ten opinions for every 9 REs out there! As someone who is doing donor egg IVF, I will say that it is an intense process, but knowing so many women doing IVF with their own eggs, they have a much more intense process to go through in trying to grow their own eggs and hoping that at least a couple make it to blastocyst stage… while those of us using proven donors usually end up with many more good blastocysts to use. I know it’s not exactly a silver lining but just thought I’d share my perspective if you do decide to go forward with donor egg IVF. By the way the website fertilethoughts.com has a pretty decent forum for those going through donor egg IVF 🙂

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    • Thank you so much, your perspective is helpful! For many reasons, I don’t think we’ll actually end up pursuing IVF, but I think I’m at least wanting to keep my uterus to have that option for the future. It’s all pretty tough to figure out and deal with emotionally. I’m so thankful for the technology and options available as well as this online support!!

      Liked by 1 person

  3. I don’t go to any of my appointments without my notebook(s). There is so much information to take in during such short sessions. Sometimes I think our doctors forget that what they are telling us isn’t as easily understood as they make it sound 🙂
    I went through a similar process last year. If it hadn’t been for the second opinion of an incredible surgeon and the support of one of my specialists, I might still be walking around without a clear understanding of what was/is happening to my body.
    Never allow anyone to force you to do what makes you feel uncomfortable because you are your best advocate.
    I hope you are able to reconcile the best medical treatment for you with your thoughts and feelings soon.
    I’m sending you positive energy to help your through this difficult process.

    Like

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