Endometriosis, Surgery and IVF – My Journey

Some of you have been readers for a few years, while others may be new and just getting to know me.

Because of that, you may or may not know that I had surgery in August of this year.

endometriosis

Recovery has been quite a long journey for me and, while I’ve opened up a little to my email list and my private Facebook group, I haven’t really discussed everything that occurred during and after surgery.

I wasn’t sure if I would, to be honest. There are parts of my life I sometimes hold close and am unsure of sharing, especially in areas I feel vulnerable or scared. It has taken me some time to really get my head around things and find myself again over the past couple of months, so I knew I wasn’t ready to write about it at all.

I also know this is a place people come for inspiration and motivation. For workouts and recipes and healthy living tips. I don’t know if sharing my personal journey necessarily helps you or inspires you.

But I remembered how many of you gave me encouragement over the past few months. How many of you have reacted to my posts about endometriosis and infertility. How many of you have shown so much love as I’ve recovered from surgery.

And I realized I wanted to tell you. Both because of your enormous support, and also because it might help someone else going through the same thing.

There are times I’ve felt very alone over the past three months, and I don’t want anyone else to feel that way. If you are going through some of the same things, please know you are not the only one.

If you want more of a background on why I had surgery, you can go here and here. To summarize, I was diagnosed with endometriosis in 2005 after having a laparoscopy (abdominal surgery). I made it my mission to learn everything I could about managing it naturally. I turned to exercise, vitamins and low-glycemic eating to help me do that.

I was able to manage my symptoms and live without much pain and, miraculously, get pregnant naturally with our daughter in 2012.

prenatal Pilates

I was at a point I didn’t think much about my endometriosis anymore. I assumed they just found a few small patches of it in 2005 and had to give me a diagnosis, but maybe I didn’t ACTUALLY have it.

Then we started trying to get pregnant with our second baby in 2014.

We tried. And tried. And tried. And tested. And tried. And tried.

I figured it just wasn’t the right time for us yet. Maybe we were stressed. Maybe we were just a little older. Maybe I was having too much coffee, too much sugar, too much meat, too little meat, too much alcohol, too little vitamins. I did acupuncture, Mayan abdominal massage, castor oil packs and tried EVERY piece of advice I found in any fertility book.

All the while, I was seeing my reproductive endocrinologist. What’s funny is, I wasn’t even really seeing him for my endometriosis. I saw him at first due to a prolactinoma I have (small tumor on my pituitary gland) and I continued to see him as our fertility journey wasn’t going anywhere. We went through every test we could, and they all came back without answers.

Basically, we were told “There is no reason you shouldn’t be getting pregnant”.

In the meantime, my back started hurting about a year and a half ago. There was no cause I could pinpoint. It was a deep ache in my right low back and SI joint that I could never quite stretch or work out.

It was familiar to me and was my first red flag that the endometriosis was back.

I sat with that for quite a while, knowing what my intuition was telling me, but letting my brain argue that I could just fix it if I tried harder.

Over the next year, my pain increased. The back pain continued, but I also was having pelvic pain most of the month. For 22 days of every menstrual cycle, I had pretty noticeable cramps.

It wasn’t fun.

pilates

I just kept telling myself “But you had a baby before! Just keep trying. One more month. It can’t be that different now than it was then.”

I finally got to the point it was time to deal with it. My doctor agreed that we should do another laparoscopy to go in and see what the full story was.

For those of you wondering, there are two questions I can answer right now:

Why didn’t they just do tests to see if the endo was back?
You can’t test for endometriosis. It can only be diagnosed through laparoscopy – cameras in the abdomen. It doesn’t show on a single test unfortunately.

Why didn’t you try assisted fertility methods, such as Lupron, IUI and IVF?
There are a few answers to this. One is that I just wasn’t ready. We were able to conceive and have a child naturally the first time, so I didn’t think for a moment I couldn’t do it again. We had a young toddler and were selling a business, and didn’t feel ready to take that step yet. The bigger answer, though, is that it didn’t make any sense to try those things until we knew what was happening inside. If the endo was back and was blocking something, then those methods might not work anyway. The doctor and we agreed that it made more sense to go in and diagnose and treat it so that I could decrease my pain and we could pick the right path after that.

So I had surgery on August 18, 2016.

It was gnarly.

I remember recovering pretty quickly from the first one, but this one kicked my butt. I got bronchitis and pink eye afterwards, so I was coughing constantly while trying to heal.

Then, two weeks after surgery I finally saw the doctor for my post-op visit. I hadn’t talked to him yet and didn’t know what he had found.

I walked in and sat down. He turned to me and said, “I can’t believe you look as healthy as you do for what I found in your abdomen and pelvis”.

They found severe scar tissue and adhesions throughout my midsection. My uterus was attached to my abdominal wall, my intestines were attached to my bowel and my fallopian tubes were twisted and adhered to themselves.

They call it a “frozen pelvis”, and it’s as bad as endometriosis gets.

The doctor informed me that he cleaned up what he could, but it will most likely come back, as endometriosis and the resulting adhesions can’t be cured. If we didn’t want to get pregnant, he would recommend me starting an intense medication protocol to put me in early menopause. Because we do want more babies, his recommendation was IVF.

endometriosis

To wrap up our appointment, he informed me that they also found a growth on my liver while they were doing surgery. He was unsure what it was and it wasn’t his area, so he was referring me to a cancer specialist for follow up tests.

He then shook my hand, wished me the best, and walked out.

I sat in the chair thinking I was ok. Remembering I had tried to prepare myself for the worst. Willing myself to think positively.

Then the tears started.

I walked out covering my face so people wouldn’t see. I sat in the parking lot crying huge, ugly tears. Sobbing.

I had prepared myself for the news we couldn’t have babies. I knew that was a possibility, and I felt somewhat ready for that. I also knew maybe the endo had come back, or maybe it was something new entirely.

I just wasn’t ready for what I heard I guess.

It’s like I knew the path I was on. It was my path and my journey. There are always bends in the road and obstacles, and I was ready for the news to take me down a different fork in the road.

But this news – the frozen pelvis, the uncertainty of my future health, the liver – completely uprooted me and put me down on some new road I had never seen before.

I felt ungrounded, confused, lost and scared.

And I kind of still felt crappy from surgery, so that didn’t help :).

The next two months were a blur of doctor appointments, phone calls, tests, coughing, healing, tears and Googling (way too much).

The week I got the news, I called friends in Hawaii and said “when can we come”. We were able to take a much needed trip to just unwind and release. It was the best healing for the soul I could have asked for, and it started my journey back to myself.

While there, we got the call from the specialist saying my liver was clear. They still don’t know what the growth is, but all tests came back negative, so I was released and cleared.

We had a consultation with an IVF specialist, and took a month to just sit with the information and rest.

We travelled, we drank, we laughed.

We became even more thankful for the things we have. Especially our daughter who is truly a miracle. We always felt she was, but knowing now that we never should have even been able to have her, she is even more precious and I’m grateful every second for her.

And that is where we are.

After much prayer and talking and questioning, we are moving forward with IVF. I really questioned telling you this, as it is an extremely personal and intense journey.

In the end I decided to because I want someone out there to know they are not alone. If even one person out there is reading this and going through some of the same questioning and soul searching and Googling, please know that I get it.

endometriosis

I won’t talk much more here about this, because you don’t need to know all of the needles I’m putting in my body or the hormones that are coursing through my veins :). Pilates and healthy eating has saved me, and I’ll continue to promote and shout about those two things here and everywhere I can.

I do feel like the Universe has put me on this path for a reason, and I don’t want to keep everything I’ve learned to myself. There is a whole world of endometriosis, fibroids, assisted reproduction and pelvic pain out there, and I’ve been through it all. I’m brainstorming ways to create a small space to help others going through the same thing. If you are one of those people and want to stay in contact, please click here. I’ll add you to an email list where you can get updates on information specific to these things.

You can also check out the workout I do that specifically helps with my endometriosis pain and stiffness.

Remember that every small step you make to take care of yourself and your body makes a difference. It might not feel like it at the time, but those small things add up. I have no idea where I would be today if I hadn’t started my healthy living routine 12 years ago.

Workout regularly, make good food choices, stay positive, laugh often, hug others and treat yourself to the occasional piece of chocolate cake. I would say that is a pretty good formula for a life well lived.

About Jessica

Jessica Valant, MSPT, PMA-CPT, is a mom, wife, business owner, licensed physical therapist and certified Pilates instructor. She has been practicing for over 15 years, and has a passion for spreading the joy in a Pilates lifestyle! She teaches online workouts and workshops for students and professionals in the Pilates and PT industries.

10 comments on “Endometriosis, Surgery and IVF – My Journey

  1. Thank you SO MUCH for sharing your story!! It has just struck a very personal and real cord with me and helps remind me that I’m not alone in my infertility journey either!! About 6months back I randomly came across one of your Pilates videos on YouTube, while searching specifically for Pilates routines that help with infertility, and I have been following every since!! I too had a laparoscopy a little over a year ago… and my husband and I are also entering the next phase of our journey, which is IVF. I wish you and your husband many blessings and love and prayers on your journey as well, and continue to look forward to all the fabulously amazing things you have to offer!

    • Thank you for your sweet response and reaching out! I hope you are recovering from your laparoscopy and I’m excited for you to take the next step :). I know it’s a hard one in so many ways, but also so exciting :). I’ll be thinking of you! Feel free to reach out anytime! xoxo Jessica

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  4. Jessica, thank you so much for sharing! Coincidently, I also had my surgery last July (July 23, 2016) with the same diagnosis but lost my fallopian tubes. We are also pursing IVF… I am very grateful for your website, especially the helpful tips as you progress through your journey. Thank you again.

    • Edi – I’m so sorry you are going through this, and I’m thankful you shared your story here and found us! I know first hand what an intense and confusing time it is. I actually plan on writing down everything I’ve learned here as I go along with the process, so I hope you come back and continue to find helpful information and community :). Jessica

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  7. Thank you Jessica for taking the time to create this blog. I am 1.5 years down the road of infertility. With a recent diagnosis of a blocked fallopian tube + a strong endometriosis-caused link, we are looking into laparoscopic surgery to diagnosis. I truly appreciate your advice on exercise and healthy eating along with the medical side of your journey. I also have a special love for PT’s as my mom is one. 🙂 I’ve only read two of your posts and am looking forward to reading more and signing up for you Pilates classes. Thank you again.

    • I’m so glad you are here and I’m sorry for what you are going through! Good luck with surgery if you chose that route and I truly believe pilates can help prepare you for surgery and also help you heal afterwards! It helped me quite a bit

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