Seeking advice after surprise stage IV endometriosis diagnosis

May 2, 2022 9:33 AM

I underwent laparoscopic surgery last month and got diagnosed with endo. I can't take hormones (nor do I want to) and it seems like there is a ton of contradictory information about how to manage this moving forward. What worked for you?

Like so many with this condition, the road to getting here was absolutely crazy. After nearly 2 years of feeling like my body was a funhouse of medical mysteries and doctors who wrote off my pain as anxiety and depression, they suddenly jumped to probable cancer thanks to my family history, followed by probably not cancer but lets take out this ovary with the cyst to help you out to SURPRISE it's SEVERE endo. I am a little over 4 weeks out from robotic assisted surgery, where we discovered I was stage IV. My left ovary and fallopian tube are gone as they were stuck to my abdominal wall and totally obliterated. I had endo excised from one of my ureters and 2 areas of my colon, and an endometrioma removed from my right ovary. My uteres was severly retroflexed, but they did not find any endo inside, and my other organs are fine thankfully. I'm sure I missed something, my surgery report is a real page turner, but those are the broad strokes. Luckily for me I received robotic assisted surgery by a team of top notch surgeons at one of the best hospitals in the world that I likely only got to see because of my cancer risk, and I'm confident I got very good care.

That said, I think I'm somewhat unique in that I really didn't have endo on my radar prior to surgery. If anything, I thought it wasn't possible because my periods were not the most painful element of my problems, and no one really seriously talked about it as a possibility other than in passing for that reason I suspect. However, now that I am diagnosed, I am in the endless pit of shaky information for how to deal with endo moving forward, and I'm overwhelmed and confused. It's become clear to me that there isn't much medical intervention to get at this point besides hormones (which don't seem to help much, may harm more and I can't take anyway) and pain killers which...yeah fine but also that won't help my hormone problems. So now I'm in a swirl of lifestyle advice: cut dairy out. except A2 dairy is ok. actually more dairy helps! And no gluten and eggs. Maybe avoid CORN! Actually go full fodmap. Also get pelvic floor therapy. Or no do accupunture instead! Actually nevermind none of this does anything. Rinse, repeat. In addition, after my surgery, I had 2 weeks of difficult healing followed by one week of MIRACULOUS PAIN FREE BLISS. Then, I got my first period since surgery and it was heavier than my heaviest periods over the last two years and my back and hip pain are back. To say I'm deflated barely scratches the surface of how lost I feel right now.

So fellow endo friends, any advice? How did you navigate your illness post diagnosis? What has helped and what was a waste of time? I realize everyone is different, but I'd love to get some guidance from folks who have been through it. Also if you have any great specialists you saw in the Los Angeles area, please send me your recommendations!

posted by amycup to Health & Fitness (13 answers total)

Your age would be a helpful fact.
posted by XtineHutch at 9:46 AM on May 2, 2022

Response by poster: I'm 38!
posted by amycup at 9:49 AM on May 2, 2022

It would also be useful to know if you want to be able to carry a pregnancy. My mom had a hysterectomy (and also ovary removal) for endometriosis, but obviously there's a potentially huge downside to that, depending on what plans you have for your uterus.
posted by If only I had a penguin... at 9:58 AM on May 2, 2022 [3 favorites]

Now that you have the diagnosis, have you been to see a specialist in endo?
posted by showbiz_liz at 10:05 AM on May 2, 2022 [1 favorite]

Response by poster: Fertility is not a priority for me, though I'd like to keep my remaining ovary a bit longer given my age. Also my periods are endurable generally - my back and hip pain are the most difficult part. On the hunt for a good endo specialist now, though most of what I'm finding is surgeons. My obgyn had nothing to offer me except hormones, though she agreed given my family history that I should not take them.
posted by amycup at 10:17 AM on May 2, 2022

You're basically headed for multiple surgeries to remove the endo when it recurs. Hormones can slow this down and put more years in between excisions, but endo makes its own estrogen and it's impossible to get every last cell out even with an excision expert. Diet hasn't ever been shown to do anything, but some people do find symptom relief that way. It's a frustrating and demoralizing disease.

Find a good pain management practice and enjoy the good times when you have them. Nerve blocks have been good for getting rid of my flares and round-the-clock opioids the rest of the time. Take care of yourself as best as you can with diet and exercise.
posted by fiercecupcake at 10:31 AM on May 2, 2022 [1 favorite]

Best answer: Honestly I... kind of didn't do anything post-surgery and got about ten good years; some of my symptoms are back now but not as debilitating as pre-laparoscopy so I haven't decided if I'll do anything. I also had endo removed from my ureters and an endometrioma removed from one of my ovaries (along with part of the ovary itself). Can't remember what else as I did not read the surgery report carefully—I can't overemphasize how doctor-avoidant and resistant to significant lifestyle changes I am, absolutely a nightmare patient except I never even show up so I can't be a nightmare, and the laparoscopic resection did SO much lifting on its own. Things I didn't realize were endometriosis-related got better overnight.

Well... not overnight, which is important. I can imagine how discouraged you are to have some pain back, but you are also still healing, so I would say give it a little while before you start to feel hopeless! I also was not warned at ALL that I would have some crazy hormonal effects from losing part of an ovary—it wasn't even a whole ovary, but I still had many months of intermittent menopause-esque side effects like hot flashes and night sweats. The fact that you're feeling bad specifically after your period is, I think, paradoxically positive—it might be related to post-surgical hormone wackiness, rather than being a return of the all-the-time pain you were having before.

Anyway! Don't be me, go to a specialist, but just as a point of anecdata, I did not get on hormones or make any dietary changes (and in fact I probably started eating a much wider range of things because I didn't have the stomach problems I hadn't realized were endo-related!) and yeah, it's clearly kinda coming back now a decade later, but nothing short of hysterectomy or menopause is going to prevent that. You've already done the biggest thing you can do for the pain, but give it a little time before you decide whether it helped or not.

(One other thing that might be helpful—I start taking ibuprofen every few waking hours a day or two before my period and continue until it's all the way done, because preventing inflammation is key to preventing endometriosis pain, at least for me. If I slack even a little on being constantly ibuprofened to the gills, I'm in big trouble. Endo is very idiosyncratic but worth a shot.)
posted by babelfish at 10:36 AM on May 2, 2022 [3 favorites]

Best answer: I've had two surgeries for the removal of endo tissue 8 yrs apart, and an overy removed. I ended up getting six months of Lupron shots after each surgery. Lupron is a chemo drug that puts you into medical menopause. Frankly, it calmed everything down and was really helpful. I also ended up pregnant at 44 and now have a healthy 7 yr old.

And I just scheduled my next vaginal ultrasound to see if they can see any regrowth that would explain my current abdominal pain.

So I'm a fan of Lupron post-surgery.

There is so much weird diet crap around this. For me I do get some relief from an anti-inflammatory diet, which also helps my psoriasis.

Good luck my friend. This is hard.
posted by Arctostaphylos at 11:07 AM on May 2, 2022

Best answer: Had resection at 27 (2017) for stage 2 with Dr Jeffrey Arrington. Tried a bunch hormones. Didn’t work. Had a partial hysto (kept my left ovary and cervix) in 2019 at 29. Helped immensely. Got on good hormones (lo loestrin, worth a look!). Those hormones helped a ton. Until they didn’t because my remaining ovary waged war and encased itself in scar tissue. So in 2020 at 30 I had my ovary removed in a dramatic surgery and now am in surgical menopause.
I only manage it currently with 4mg testosterone. And so far, endo wise, been pretty great. I have a billion health problems. But much less endo pain and no periods. Menopause sucks and is scary but my body just couldn’t anymore with those organs.
I’m told to avoid estrogen as it feeds the endo. So I’m sticking with T for now.
Advice make sure you are with someone that understands endo (Nancy’s nook on Facebook is good). Make sure you are with someone that understands menopause and endo if that’s a route you need to take. Hysto/menopause isn’t a cure. There is no cure. But it and resection fucking really helped my pain.
posted by Crystalinne at 11:22 AM on May 2, 2022

Best answer: Then, I got my first period since surgery and it was heavier than my heaviest periods over the last two years and my back and hip pain are back. To say I'm deflated barely scratches the surface of how lost I feel right now.

I had surgery for endo a year ago. My surgeon warned me that the first two periods after surgery might be very painful, and they were (basically the same as pre-surgery) but the third period was almost totally pain-free, and now they’re still very manageable with Tylenol.
posted by third word on a random page at 2:13 PM on May 2, 2022 [2 favorites]

Best answer: They didn't even wake me up after the laparoscopy and just went straight into the hysterectomy procedure. I get cranky about having to take hormones regularly and try to stop them and always just go right back. The hot flashes are completely unbearable. Probably because I live in Hell's armpit, but that's not negotiable at the moment!

I think the lifestyle stuff you're reading is contradictory because it's not proven and there is a lot of illegitimate "holistic health" type advice floating around on the internet. Personally, before surgery, I felt like crap and had debilitating pain no matter what I ate or how much I worked out, and there were times when I worked out a lot.

I see from your responses you'd rather not have everything removed, but to my mind, one surgery was vastly better than multiples, even if they were years apart. I have zero endo pain now and I no longer feel like a prisoner. It's also made me a lot less mean, because I'm not so scared all the time about when the next flare up will be.
posted by the liquid oxygen at 4:45 PM on May 2, 2022 [1 favorite]

Best answer: What did your surgical team recommend? Were you offered info about possible treatment plans? Advised about what to expect going forward, or which doctor to call/see next? Relatedly, is "can't" take hormones literal, as in, they said it's contraindicated for you? If so, did your team have anything else to say about that, any alternatives, any ideas? Did Lupron* come up at all?

You may have already got all this covered, of course. I'm just a bit concerned on your behalf, because it seems like you might be operating on limited info. If no one sat down with you after surgery to recommend next steps, or to at least refer you to a specialist for ongoing care, I'm really sorry. You deserve better care than that!

Personally, my aftercare looked very different (if yours was, indeed, problematic). I also had the whole "this looks like metastasized cancer, we're calling the top gynecologic oncological surgeon in [global metro area]" thing, followed by the surprise that actually, I had an endometrial disaster lurking within. In my case, it was the remains of an exploded endometrioma and also a bunch of big bad adhesions. I was very lucky: the surgeon not only saved all my organs but kept them intact.

It was a shock, though; I was very young, and aside from awful but VERY occasional pain, had zero symptoms until the day I collapsed in unspeakable agony. This is common, I'm afraid: severity of symptoms often doesn't track with severity of endo. Relatedly, endo is kind of impossible to diagnose or monitor, until they open you up for surgery. My surgeon was very open about these realities, and about the fact that we don't know what causes endo, nor do we know how to definitively cure it (for some patients, not even a hysto will end this stupid condition!!). Also, he emphasized that as much as surgeons may try, excision cannot guarantee the removal of every cell, and if there's a cell, there is likely to be regrowth. In light of these facts, my surgeon had the following goals for his patients: limit the amount of potential regrowth, minimize the number of excision surgeries one might need in a lifetime, and delay recurrence after surgery for as long as possible. He was very down on surgeons who present excision as a resolution, rather than the first step of a patient's long-term management plan.

So, in line with the above, my surgeon didn't consider a course of postoperative Lupron to be optional. Not after removing endo so bad and so widespread on someone so young. He also put me on hormonal birth control, and based on his advice, I chose to believe him that BC usually does help suppress endo growth in patients, as opposed to just "masking symptoms," let alone spurring new growth. Like, yeah, endo sucks because even the top experts know relatively little, due to the lack of funding and research. But ultimately, the opinion of my talented doctor, who'd treated tons of endo over the decades, was (and still is) more convincing to me than various counterclaims online. Few of which seem to come from actual, named doctors who currently treat endo.

Of course, it's not like I can say for sure what any of my medication accomplished, or not. Or what was excision surgery vs the medication. Endo is annoying that way. All I know is that for about seven years afterward, I had no pelvic pain, ever. Sadly, I am now experiencing some pelvic weirdness that I have to get checked out, and my instinct is it's endo again, which sucks. But I was warned to expect it. And I think meds probably did put off what they could for a long time. Meanwhile, I just continue to exercise, and take my BC and testosterone (the latter is for gender, not endo, but fortunately it does seem to help endo). I don't bother to eat anything in particular, though, as none of the specialists I've seen put stock in endo diets.

Overall, the uncertainty and lack of control is the hardest part. It used to torment me, but now it's just an annoying fact of life. I imagine this will get easier for you too, in time. Right now, it's only natural to feel overwhelmed. I just hope you have helpful doctors you can trust, or that you're able to find some in the near future!

(*About Lupron, I just want to say there's lots of misinformation online, and I'd recommend talking to a doctor rather than googling. There's this persistent idea that taking Lupron is a guaranteed ticket to a myriad of hellish side effects. Even worse, some people make out like it's fairly common to suffer effects so severe as to cause permanent disability. This just isn't true. Yes, there are some terrible and rare side effects associated with Lupron. The essential word is rare. Tons of patients, including me, experience nothing worse than hot flashes, but we aren't the people who are vocal about Lupron online.)
posted by desert outpost at 12:21 AM on May 3, 2022 [1 favorite]

Response by poster: Thank you everyone for your advice. Desert outpost, my situation was a lot like yours in terms of symptoms. I was largely fine until I just wasn’t. It happened out of nowhere and fast.

You’re right that I haven’t gotten the post surgical direction I need - my surgeon just said I could resume obgyn care from here and come back if I needed surgery again. However, the only good thing my gyno did was refer me to him after I forced her to do a ca125 test and she was scared shitless by the result, so I won’t be returning to her.

I discovered the hospital I’m at has a speciality endo group that is led by Nancy’s nook physician. I gave them a call yesterday and I’m just waiting to hear back. I do think physical therapy would be a good option for me since so much of my pain is isolated to my back and hips. I will also investigate Lupron and other meds - I’m limited from birth control due to an elevated breast cancer risk in my family, but frankly, suppressing my periods sounds pretty freaking great at this point.

My sincere appreciation to all of you for sharing your experiences. It’s given me a bit of hope!
posted by amycup at 6:33 AM on May 4, 2022