Getting Diagnosed With Endometriosis: Part 2

I left off my last post just before I met the doctor who changed my life. After 12 years of pain, blood, and dismissal, I finally, finally had the fortune to find someone who actually genuinely cared about patients, who would do whatever it took to find me answers. The answer was endometriosis.

D is for…

Dr. D, the woman I credit with saving me, actually was a referral from my boss’ wife. The wife also had issues at the time, and was more than happy to give me the name of her doctor. I called and spoke to the receptionist, who told me I would need to apply for an appointment – the doctor only saw the most troublesome cases. It would take somewhere around two to three months for an appointment, a couple of weeks before I’d know if I was getting one at all.

This was discouraging, but I applied anyway. I had every medical record I could track down sent over, I filled out the 10 page application detailing my symptoms and medical history. I had to include my referral’s name – the only way to get in was with a current patient sponsoring you. It took a day and a half to get it all together, but I faxed everything the second it was done. Then I prepared to wait.

The day I faxed everything, just after lunch, I got a call from the medical office, which I immediately picked up, only to find Dr. D herself on the other end of the line. I can honestly say I have never, before or since, had a doctor call me herself directly like that. She verified a couple of things about my application, said my case looked very interesting to her….then she asked me to come in the next day. THE NEXT DAY! Fortunately I had an excellent boss, but I would have quit my job if it meant seeing a doctor who actually seemed to be taking me seriously.

I’d love to say I was more composed at my appointment…but I wasn’t. My mother went with me for support and a second pair of ears, and as backup, because under everything, I was still expecting the doctor to blow me off. In her office, she asked a lot of questions – much more extensively than anyone ever had. A lot. We were there for about 2 hours, just answering questions. Then she did a quick exam, an ultrasound,and sat us back down. “I don’t know what’s going on here, but I promise, we will figure it out. I won’t stop until we’ve figured out what’s going on.”

I literally cried. I’d never felt validated like that, and it was nearly impossible to believe she meant it, but I still wanted to believe she did. Then she laid out her plan. She wanted to try me on birth control for one month to document in her records – but I was supposed to check in with her by phone every week during it so she could pull me off if the period didn’t stop. She wanted me to go to the lab for extensive blood testing (and I mean extensive. They actually had to stop and give me a break in the middle.). She ordered a CT, an MRI, and ultrasounds every other week to track my cysts and anything else they could find.

Except for the appearance and disappearance of cysts, everything came back normal (I mean, my bloodwork had some issues – I was anemic again, and my thyroid has always been low, but none of the major blood diseases she was looking for popped up). I hadn’t lasted two weeks on the birth control before she was horrified. And she called us back into her office. I was prepared for her to say nothing was wrong, but once again she surprised me. “I want to do an exploratory laproscopic surgery. Nothing is showing up on tests, so I want to see it firsthand.” By the time I walked out of that appointment, the surgery was scheduled for a month out, right at the end of the year.

Surgery Looky-loo

It was supposed to be a very short surgery, lasting just an hour, but obviously I wouldn’t be able to drive afterwards so my mother went with (she was there when it all started and she’s stuck with me on this until the end). Four hours later, Dr. D finally went to the waiting room to let my mother know the surgery was over. When I woke up, I remember Dr. D saying she had a diagnosis. And I cried again.

She didn’t tell us the answers until the next day at the followup appointment, and I’m so grateful for that. The surgery had revealed severe endometriosis. In fact, my last ER visit had likely been for appendicitis, but it wasn’t showing up on scans because the endo adhesions had completely mummified it. Dr. D had only been guessing at what she was pulling out there, and when she cut into it, it exploded into black sludge like an overfilled balloon (she actually thought my appendix was so bad that I’d likely had appendicitis for most or all of the prior 12 years, and it just hadn’t been able to burst). She had pictures of my abdomen (which I’ve unfortunately lost in the move overseas, darn it!) and it just looks like a haunted house with this filmy white spiderwebs everywhere! I even had appendix cells inside my uterus. I was diagnosed with stage 4 endometriosis, adenomyosis, and ovarian cysts, and while she’d excised everything she could, she came up with a plan to try to manage the symptoms when they returned.

I will say, recovery from that surgery was easy, and I think it was because I had so many issues in the area that being cut open was the least of them. I spent the next two months with no pain, something I couldn’t even remember not having. And then the symptoms started again.

This time, I was seeing Dr. D every other month, and when the symptoms came back, she bumped me up to every month. None of the hormonal solutions worked – in fact, they often caused completely unexpected repercussions. She had me get the extensive blood testing again, partly because she simply couldn’t believe the amount of blood loss I was experiencing. One year from the last surgery, she pulled out her ace in the hole – a course of Lupron, an injectable med that would send me into menopause.

The Light At The End Of The Tunnel

This was a drastic solution, but she had suspicions that there was another invisible issue. However, I could only be on Lupron for six months at a time, and then I’d have to be off it for six months before I could start it again, yo-yoing me in and out of menopause. I took a minute to think about it, and then suggested my own terms. I wanted to do the Lupron, but only one course. If it worked, I wanted a hysterectomy before the six month period was up. I’ve never been someone who wanted kids, and always knew that if I did find a maternal instinct, I wanted to adopt. Having a hysterectomy seemed like the best option for me.

Since I was only 23, Dr. D was a bit more hesitant than I was. She asked me all the typical questions – what if I changed my mind and wanted kids? (I won’t, but I can always adopt). What if I got married and my husband wanted kids? (Why would I marry someone who wants something I don’t? Plus, we can always adopt). Satisfied with my answers, she came up with a counter-offer: 3 months of Lupron to see if it works, and during that time, I see a psychiatrist who needs to sign off that I understand the repercussions of a hysterectomy – because if Dr. D was right in her suspicions, the whole system – ovaries, uterus, everything – were going to come out. At the end of three months, I would get my hysterectomy. Done deal – we even shook on it.

I already had a psychiatrist on call, and within 2 appointments, she signed off that I would not regret this decision. It took the Lupron one month to shut my ovaries down, but by the end of the second month, it was clear that menopause helped. Despite the mind-boggling migraine I experienced, we moved forward, scheduling the surgery. In the meantime, Dr. D tried me on hormone replacements to help with the side effects of menopause, but no matter what she tried, my body just went nuts. The day before the surgery, she made me come in for an appointment – a last chance to cancel. She explained that while yes, the surgery would put a stop to my periods and the cysts, it wasn’t likely to stop the endometriosis, which had spread to other organs. She would remove what she could but this wasn’t going to solve all my problems. I didn’t care. No bleeding was better than the red ocean that poured out of me multiple times a month. Then she discussed the results of the Lupron trial with me – essentially, she wouldn’t be putting me on hormone replacement after the surgery because she was sure that was the root of my problem – my body doesn’t read hormones properly. She never was able to give me a name for it, but it explained a lot of issues I’d had – periods on hormonal birth control, my low thyroid going lower on thyroid replacements, and so forth. My body gets a hormone, even one it’s produced itself, and instead of saying “Ok, I need to do this”, it gets confused, goes berserk, and starts throwing everything at the wall to see what sticks.

All of this was important to know because going into menopause at 24 comes with plenty of risks. Regardless, we moved forward. The surgery went pretty easily, and when I woke up and she told me it was over, I started crying (I don’t usually cry, but I was just so beaten down in this process that it was insanely emotional to be actually getting somewhere!). She actually thought I regretted it until I said “It’s gone? It’s really gone?” and laughed through my tears.

Again, the recovery was pretty easy – I was only laid up for about three days. About a week later, I got my period. I can’t tell you the fear I had when I saw that blood. I was sure this doctor I loved had lied to me, left the parts in. I thought my uterus had grown back and I’d never be free. I was a crazy person. Fortunately, Dr. D was great about returning my frantic phone call quickly. It was just a cervical period – she’d left in half my cervix for pelvic support, and sometimes in extreme cases, this could happen. It was rare but normal. The cervical periods continued every 2 weeks or so for about 6 months, and everytime my brain would go nuts, but they did eventually stop. And so did most of the pain – at least for that time.

Living My Life

Nearly a decade later, I still have endometriosis. I’m never going to be free of it. I still have debilitating cramps. I have reason to believe it’s wrapped around my gallbladder now, although I’m postponing the surgery to find out for sure. I still get the bloat and everything. No one, not even the amazing Dr. D, can cure me. But what she did do was remind me that I’m not crazy (in this sense) and I’m not weak. She gave me a name, an explanation, and solved as much as possible. It’s much easier to deal with the endometriosis when I’m not also gushing blood and lightheaded from anemia. It’s much easier to deal with the pain when I know what it is.

To some degree, I’ve learned to co-exist with my condition. We’re definitely not friends, but I no longer want to set my body on fire just to watch the endometriosis burn – most days, at least.

It took a couple of years after my surgery for me to start really hearing other women who were struggling to get diagnosed, who felt like they were crazy, who thought maybe their periods are just supposed to be that bad. It struck me that in the 12 years before Dr. D, not a single doctor said the word endometriosis to me. I didn’t know anything about it, and other women are facing the same issue.

My family’s medical history has made it insanely obvious how important it is to talk about these things. Being open about my experience and my history can help others find their way to a diagnosis (and already has) and getting diagnosed earlier means they might not need a hysterectomy, or maybe they just can salvage their mental health. Endo is ridiculously common and we should all know about it. It should be one of the first things doctors look for instead of not making it on the list at all.