My Diagnosis, Part Three: where there's a will, there's a treatment

12:31 PM

Here are parts one and two of my diagnosis.

Two weeks after my surgery, I kicked off New Year's Eve at my ob/gyn's office for a follow-up appointment. I, like everyone else, decided to sneak this in before my insurance deductible ran out, and so Andrew and I sat in a crowded waiting room, playing on our phones. I didn't have to wait long, but it felt like forever. I had been pouring over endometriosis message boards and reading articles all throughout our Christmas travel, and I was ready to get some answers directly from my doctor.

Dr. Carl called us in, and we started off by looking over photos from my laparoscopy. As expected, the endometriosis was concentrated around my left ovary and left side of my uterus - streaks of white on top of normal tissue. They had burned most of it off, and now, I had some minor scarring leftover. Dr. Carl categorized this as "minimal endometriosis," which I assumed meant Stage I but he admitted he wasn't sure how the stages were categorized.

We started to talk treatment options. Dr. Carl thought the continuous birth control I was on wasn't a good solution since I was still experiencing pain. So in his opinion, that ruled out the "birth control plus physical therapy" option we were considering. The next step would be Lupron, which essentially shuts down your uterus for six or so months and then reboots it, stopping endo production in the process. In other words, I'd be going through menopause - complete with all the side effects - at 24 years old.

I had done a bit of research on Lupron since I knew that was on the table. If you Google it, you will see it has two primary uses: treating endo and as a chemotherapy drug for advanced prostate cancer. I'm sure many of you are saying "lolwut" like I did...

My fellow endo fighters on various online support groups had the same reaction. I read words like "poison" and "nightmare" and "literally the worst thing ever" when looking for women's experiences with the drug. Some experienced bone loss, weight gain, hair loss and a myriad of other debilitating symptoms that made their lives worse than before the drug. Basically, I said, "Heeellll no" to this option.

I told Dr. Carl a bit about this, and he still pushed for Lupron. He said physical therapy wouldn't really help me, and this drug would be the next step in my treatment. Then he got into another topic I wasn't entirely ready to talk about: having kids.

Up until then, Andrew and I had decided we didn't want kids until I was 30. That would give us plenty of time to travel and be a young couple before settling down and having babies. But Dr. Carl said I likely wouldn't have this luxury anymore. Waiting five or six years to have kids might not be an option for me, and it would be a lot harder for us to conceive. Right now, it wouldn't be as hard.

Andrew and I looked at each other. We'd barely been married four months, and now, it felt like our five-year plan was starting to crumble. I got a little choked up and walked out of his office feeling like I didn't know what to do. Dr. Carl said this decision would be essential to determining how to proceed with my treatment, and he gave me some time to read materials and think everything over.

My husband and I talked for a bit that day and came to a decision. We weren't ready to have kids. If we couldn't conceive, we'd cross that bridge when we got there. But there wasn't a point in popping out a kid we weren't ready for. Dr. Carl himself said he couldn't predict how my endometriosis would progress, so why jump the gun and put me on a drug that would more likely than not make me absolutely miserable? Andrew even said he'd rather we have kids early than put me through that kind of nightmare.

Also, I was feeling pretty good, all things considered. I could still go to work, dance at concerts, travel for work (despite being exhausted) and enjoy my yoga classes. I was doing a lot better than many of the women I had talked to through support groups. I wasn't ready to consider Lupron as an option until I was unable to get out of bed or be a functional person.

So we decided on a treatment on our own, for now:
  1. Stay on the continuous birth control. Maybe now that my endo had been burned off, it would help minimize my pain.
  2. Go to physical therapy and continue with yoga. Yoga had started to help my pain, and maybe physical therapy would help more, despite what Dr. Carl said.
  3. Change to an anti-inflammatory diet. I had sort of done that after my ER visit a year ago, and that would likely help the pain in my stomach. It wouldn't affect growth of endometriosis cells, but it would at least manage the symptoms.
That's where I'm at right now. I'm currently searching for a physical therapist, and my diet has been helping so far. This is a good summary of what I've read about endo symptoms and food:

I'd already been able to tell that most of these foods upset me. Dairy, carbs and caffeine don't seem to bother me, but red meat always has (I'd already cut out beef), and saturated fats and processed foods weren't agreeable either. I'd already cut alcohol out of my diet for a while, due to being on anti-depressants, and I decided to minimize everything else as much as I could.

So now, I'm collecting recipes and cooking again, which I haven't ever really been great at. Andrew is the master chef in our household, but I think he likes that I'm actually trying to make dinner... Anti-inflammatory foods are good for him, too, since he has a history of arthritis and other joint ailments in his family. If you'd like to see my master list of anti-inflammatory Pinterest recipes, click here.

I will be using this blog to keep track of my food and yoga/therapy progress and see if I'm getting anywhere. If I don't feel like I'm getting better or if I start to feel worse, then the next step is to see an endometriosis specialist. Andrew and I are in agreement that Lupron will be a last resort. If it means we have to adopt or try some type of fertility treatment down the road, then hey, that's what we have to do.

What sort of endo treatment are you on? Do you agree/disagree with anything I or my doctor said?

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  1. Thank you for sharing! I have pcos and I face some of the same issues. May God continue to keep you.

    1. Thank you so, so much for reading and for the encouragement! Hope you read something that's helpful to you. :)

  2. Thanks for sharing this - I have had nearly the same type of experience and had surgery this year at 28, with the same diagnosis at a level 1 or 2 endo. I didn't get the option of surgery until going to a reproductive endocrinologist when my OB/GYN wouldn't take the pain concerns seriously. It's shocking how awfully painful and disruptive even this lower rating of endo can be. I felt a great amount of validation after being diagnosed - like I wasn't actually crazy or just a weak person. It's good to share stories and I appreciate yours!

    1. Thank you so much for reading and sharing your experience! It's so disheartening to hear about other ob/gyn's who aren't taking their patients' pain seriously, but I'm happy you were able to have surgery. My current ob/gyn has been awesome about addressing my symptoms, but I know a lot of women out there with more serious cases haven't had much success. I hope you're feeling better and that you're getting the treatment you need!

    2. I came to your blog from the Yahoo article as I was shocked to see a fellow Carmel lady writing for it! I graduated in 2005! Anyways, I also have endometriosis. Reading your diagnosis took me back through my own journey. It got me emotioal. I should have known all along due to my history of menstrual issues but it never came up. I'm dealing with a severe case where my only option is a total hysterectomy. I was lucky, however, to have 3 beautiful daughters before it got worse. In fact, it was a year after the c-section birth of my twins did I go in for the exploratory laproscopic surgery. After their birth, my health took a spiral downwards. I lost a lot of weight and ended up having my gallbladder removed. Things just seemed to get worse so my OB decided to do exploratory laproscopic surgery. I was told the same thing, that if there is anything that could be done, they would. I woke up to being told it was too bad, nothing was done. It was covering my entire uterus, ovaries, attached to my bowels and along my c-section scar, it all pulled together and stuck there. My only option was to take it all. I was 22 years old, a mother and being told that that was it. I ended up leaving that OB and finding another who has a totally different outlook on my issues. I've since dealt with ovarian cysts, uterine cysts, chocolate cysts and my latest was an almost 5cm cyst that ruptured. It's been pure Hell. I'd love another baby, my OB is positive I can but we've put it off for now. I was told about Lupron as well but unlike your OB, mine told me that's the last thing she wants to do to me. So for now, I do the birth control pill, exercise and diet thing. She has a 5 year plan and wants to even push the hysterectomy to 10 years. We'll see. It's a roller coaster. I wouldn't wish this on anyone. I'm sorry you've been through so much and also at such a young age. Thank you for sharing your story. I hope you and Andrew get that baby you want when you're ready.

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