See Part I here.
The Diagnosis & Prognosis
I am sick with worry as Alana and I go to the appointment this week. I am so sure I am going to find out I have cancer and I go to the worst case scenario. My community of women that love the shit out of me send me texts and requests of phone calls immediately after I get my diagnosis.
Frecker brings us back to her office and asks how we are. I want to grab my chart from her hands and find out what is wrong with me. I tell her that I am terrible and tired and in pain and not sleeping and worried because I am pretty sure she is about to tell me the worst news. She assures me I do not have cancer and I am not dying and then tells me I have adenomyosis. Severe adenomyosis. Probably caused from childbirth. What they thought was fibroids, or maybe polyps, was really the lining of the uterus breaking through the muscle wall and creating knot-like masses. It was bad.
I felt so torn in that moment. Hearing that I was not crazy, or overreacting, and that the pain was real was really validating. The bleeding was terrible. My quality of life was declining and there was a reason. I love to sprint in my life. I have to. My business is big and takes so much from me. I love taking care of my bebo mia community, my friends, my Alana, my Gray. I can barely get myself through the day. I am dizzy. I am tired. I am weak. I feel like I am on the verge of fainting all the time. I fucking hate being weak. Frecker validated that for me in that moment. But now what? I was hoping it was going to be fibroids and I would just have to get them removed. No biggie. But this was not going to be a no biggie situation.
I asked what are my options? I could feel the tears prickling behind my eyes. She started with the list. First, you could try taking a medication that will thicken the blood in just the uterus (not sure how that would work) and slowly over time my periods would get lighter and less painful and some people report that they pretty much get their lives back. But you would have to take it until menopause. Next you could take an oral birth control pill and take it right through so you don’t get your period. The third option is an IUD. And finally, you can have a laparoscopic hysterectomy.
I hate these options.
I took a deep breath. Alana squeezed my hand. OK, I have questions. And I started my list. How does my Crohn’s disease impact my options? I manage it with diet and exercise and I don’t want to take anything for my adenomyosis treatment that will then make me need to take something for my Crohn’s. She didn’t know off the top of her head how Crohn’s would impact my options. I immediately ruled out an IUD. Did not even discuss it. Taking an oral contraceptive everyday also just felt wrong. My body would always think it is pregnant – ummm, no thanks. The blood clotting meds were only a maybe and with time. I needed a fix. The only cure for adenomyosis was a hysterectomy. That was it. I hate these options so much.
I needed to weep somewhere alone.
Well, if I wanted a hysterectomy, when could I have the surgery? Frecker opened her calendar and started looking at her 2018 dates. 2018? February? Shit, no! I could not go that long living like this. I had just finished a 10 day period that had lowered my hemoglobin levels to the point that I felt like a zombie. It was extra challenging making this decision while I was in the middle of a super low phase. I told her if I went the surgical route, I could not do it in February. It is a really busy time with work. Natasha may still be on mat leave. I could not make it that long. If I was leaping, I was leaping now. Frecker went to talk to her admin team and came back in the room announcing that she had an early December spot.
Alana urged me to take some time and think about all of this when she saw my impulsive desire to say, ‘I’ll take it!’. She squeezed my hand again. Ok, give me 72 hours, I will have my decision by then. I booked my Friday ‘Decision Day’ appointment and left her office. My phone was full of texts from my women asking how it went and what was my diagnosis/prognosis. I replied ‘it is not cancer, I need to process and will fill you in after I go for a walk with Alana’ to Natasha, knowing she would be climbing the walls.
My desire to sob had passed since Frecker told me, and I went into research mode. Alana started a document on our phones and wrote down everything that would pop into my head in the time between now and decision day. I called my women and told them my options and that I was leaning towards a hysterectomy. They had questions. If I did not have the answers, I would add them to my question document.
I became pretty obsessed over the next 3.5 days. I looked at photos of sick uteruses more than I ever have before (which is saying a lot as a reproductive health expert). I watched hysterectomy videos on YouTube until Gray begged me to turn them off because they were grossing her out. I posted in a mom’s group to ask if anyone would mind me interviewing them if they had undergone a recent laparoscopic hysterectomy. I prepared a list of questions to ask:
- Does it change how sex feels?
- How long was your recovery?
- What meds/drugs did you take post-op?
- Does your vagina feel shorter?
- Can you still get wet when aroused?
- Did you breastfeed after?
- Did you gain or lose weight?
- How is your core strength?
- Does it feel weird having your reproductive organs gone? Like, there is just a void there!
- Anything else you want to share?
I interviewed a couple people on the phone and a couple more online. I was happy with my answers, particularly about sex still feeling good; a couple women said it felt even better.
Some of my holistic practitioner friends urged me to explore other modalities. I think everyone was forgetting that this had been a 10 year battle. I had tried body talk, reiki, herbs, homeopathics, plant extracts, iridology, acupuncture, chiro, multiple naturopathic doctors and 5, or was it 6, different MDs. This was not something that I was entering into lightly. I understood the repercussions, risks and benefits of my choice.
I was so fucking sad that I was losing my fertility and reproductive abilities. My identity was so connected to fertility. My passion and work is all about reproduction. My identity as a mother was up in my top 10 identifying traits. I suddenly wanted another baby more than anything. Alana assured me that if we decide to have more babies, she had a perfectly functioning uterus and would have them for us. We could even use my eggs if we wanted, since they would leave my ovaries behind with my surgery.
I would go from rational and reasonable to angry.
My vagina would just end since they would cut out my cervix and just sew it up. I sent this text to Alana in the middle of the work day. ‘This is what my pussy sign will be’…
She laughed and then encouraged me to ‘talk about it’. I didn’t want to. I would feel ‘fine’ again right after.
‘I cannot have any more babies. I hate these options.’ It became my mantra.
Friday came and my relationship status with my uterus went from ‘it’s complicated’ to ‘widowed’.
I was going to have the surgery. I went to my Decision Day appointment armed with my question list that I had been adding to over the last 3 days. Frecker brought us into her office and we talked about how we all liked each others’ shoes and then got down to it. I want the surgery, I told her. She again walked me through my other options. No, I was sure. I want the surgery. I want my life back.
I went through my questions. I got answers that I expected. Yes, I could still breastfeed if Alana had another baby for us. No, it would not impact my thyroid. No, it would not impact vaginal lubrication. Yes my vagina would get shorter, but not by much. I should feel totally back to normal in 6 weeks. And so on. I had three big asks around my surgery day and the rapid fire conversation went like this:
Me: I want Alana in the OR with me until I am put under.
Frecker: No, she can’t go in the OR.
Me: I want to see my uterus, fallopian tubes and cervix after.
Frecker: No, it goes to pathology.
Me: I want to have Alana in the recovery room next to me.
Frecker: No, she cannot go in there.
Well, since I did not like any of the answers we circled back to the top. Frecker assured me that Alana could go as far as the OR doors with me and that Frecker would take photos of my organs for me and that she would make an exception and allow Alana to be in the second recovery room with me so that we would be together as soon as I woke up.
I ask her about some holistic options around my recovery, she doesn’t have a comment. She assures Alana and I that removing my reproductive organs will have no impact hormonally to the body and will have no impact on my other systems. I make some crack about the culture of Western medicine and surgery only seeing the body as divided systems and not as a whole. She doesn’t touch that. I am angry again.
She asks about our baby #2 plans. She discusses our options. She deems Alana’s uterus fit for pregnancy. She suggests some clinics that she likes who are better for queer couples. I tell Alana that we should mix a few embryos from her eggs and my eggs and go for twins. Alana tells me that the twin from my egg will probably eat the twin from her egg in utero. I agree. That would probably happen. Frecker gets us back on track. We are her last client of the day before the Thanksgiving long weekend and her wife wants her home. Frecker assures us that we can take our time but I have a wife and I know that that shit is only what you say to your clients – wives get pissed when you don’t help cook and clean for a house full of company.
Then there was the pain management question. I have an allergy and intolerance to most pain medications that I have tried. Morphine = hard no. Codeine = maybe. Crohn’s means that I cannot take any ibuprofen type meds. Oxy = no idea. General anesthetic fucks me up so bad it is nuts. My pain management is a point of stress for me. Frecker makes an exception and agrees to set up a consult with anaesthesia a couple weeks before my surgery.
I cannot have anymore babies. I will never be pregnant again. I will be barren. What the fuck?!
Fecker is chatting with me and sharing the highlights and assuring me that there are some upsides to a hysterectomy, no more periods and no more paps. She looks down at my chart. Whoops, she says, you will still need paps due to your history, we cannot be sure we removed all the cervical cells with the surgery. Swabbing my dead end vagina. Perfect.
She walks me through the surgery. She shows me how she is going to go in laparoscopically and sever the blood supply to the uterus and cut out my cervix and pull it all out through my vagina and stitch my vagina closed. My ovaries are just going to hang out there still doing their hormonal function. She explains that research shows that it is the fallopian tubes that cause ovarian cancer, so that is why she is taking them out with the uterus. She makes some drawings for me on post-its as visual aids. I laugh at her lack of artistry.
I get a pap to make sure my cervix is healthy enough for Frecker to just cut it out. I fill out my pre-op paperwork. I go to book my surgery date and the admin says there is an new opening November 17th. I look at Alana to see if she nods or shakes her head to that being surgery day. She shrugs. I have no idea what that week looks like for me. I don’t even open my calendar. I just take it. I will figure out what happens after that.
I leave feeling numb. Alana wants to go for lunch. I don’t want to. We go out for fancy pizza.
I get home and call my mom who is in Denver at the Emerging Women conference to tell her I have booked my hysterectomy for November 17th. She sobs. I blame her uncharacteristic response on the fact that she was in a room full of women and had a lot of the ‘lady feels’. She begs me to make sure I am making this decision as my whole self and not for any external reasons, like my work. I am too drained to understand her request in that moment. She tells me she will fly in from Vancouver for my surgery day. I feel relieved that I do not have to ask. I will need my mom. So will Alana. My mom says I can change my mind right up to November 17th if I want.
I am in logical mode and explain to my mom that I am pretty sure I am done having babies, so it is fine.
It is not fine.
I liked the option of babies – even if I was not going to take my body up on said option.
I love my uterus. Bye uterus.
Alana keeps asking me what my mental and physical wellness plan is. I don’t have an answer. It is Thanksgiving weekend. I don’t want to go anywhere. Fuck turkey. Alana books me a massage (thanks to my awesome birthday gift certificate from my bestie Olivia and her fam) at Body Blitz, one of my favourite places to decompress and relax.
We go to Body Blitz and as soon as I sink into the salt water pool pre-massage, Alana starts explaining that she would like me to create a plan around my healing and grief so it doesn’t come out sideways. I tell her she tricked me. She got me naked and contained in a pool and then is making me create a plan. I tell her I don’t know what I will need. I don’t know how I will feel. Some minutes I am just excited to not feel tired and in pain and weak and other minutes I just want to cry because I am so sad over the loss of what I attach to my womanhood. Then I am angry. I just go through that cycle. Alana explains that it doesn’t have to be a plan that I share right now, but at some point. I ignore her.
My mom says the same things on my calls to her – process this as my whole self. Meditate. Be with it. Connect.
Am I grieving wrong? Yes, this shit may come out sideways. Sorry all. That is all I got.
Natasha and I teach the reproductive anatomy and fertility class for our MSP course this week. I want to cry but 122 people are watching me. I finally get it. I understand what people that are infertile are going through. Well, more than I did before.
We have a baby shower coming up. I don’t want to go.
I hate my options.
Now, I am working on owning it. I choose it. That is my new mantra. I am hoping I will start to believe it soon. I have 3 weeks for it to stick.
I am coming up to my final period this week. My last one ever. I will not need my pretty pencil case with feminine hygiene products in my purse anymore. It is weird.
One day at a time.
Part III: My pre-op and big day (spoiler alert – there may be photos of my body parts in this section)
Bianca Sprague is a birth doula, lactation educator, childbirth educator and business consultant. She and her partner, Alana, are the moms to their 10 year old daughter, Gray. Bianca is the CEO and co-founder of bebo mia inc. and Baby & Me Fitness.
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Thank you so much for sharing this journey with us. It is so valuable to read about what this experience has been like for you. It brings such an important light to a really challenging situation.
You are amazing. We love you. ❤️
Thank you for sharing this story with your community. I can see that it’s been a difficult time for you , and you’ve made a really difficult choice. I wish you health in the future and that you do indeed “get your life back” as you are hoping for. I have never heard of this condition, so you have also taught me something new today as well. Thinking of you. xoxo
Bianca, as someone I look up to and admire greatly, thank you for taking a leap and sharing this with us. I still have my uterus, thankfully, but I’ve actually had 2 miscarriages, one when I was 19, and last year, when I was 26. The second one I mentioned in past months. I can’t really understand how your feeling regarding having this hysterectomy done, but I know in the end, you’ll have no more physical pain. But the emotional is what we as women need to communicate about with our partners. Losing your uterus, it’s equivalent to losing a baby, or two, or five. It’s losing part of yourself, but try not to look at it from that perspective. You said in the letter here, there’s many good things you can still enjoy without.
Wishing you all the best with this new journey, but praying for you as well.
have been thinking of you. thank you for sharing.
Oh Bianca – thank you again for this post and sharing your journey with the world. I too had been thinking about and about how we so seldom hear the patient’s narrative (outside of a childbirth context). I hope you take as long as you need to process this