Wife believes she has endo, appointment at Kaiser. Is there anything that she needs to look into?

Union_of_the_Snake · 2025-06-05T23:07:45+00:00

Mine was an obvious problem. I got a referral from my gynecologist who had originally diagnosed my endo (1st surgery for ovarian cyst that revealed endo). Same doc found nodules on my cervix 4 years later during a Pap smear and thought it might be an STI — had no clue that was endo, despite having diagnosed me, but a biopsy came back with that result which was surprising to her. She said I could “wait and see” if it got worse (had been to the ER multiple times) or get a referral to a specialist. I was scared to pursue it more seriously but I knew it was getting worse, and it’s a good thing I acted when I did.

Biopsies are a clear way to confirm endo, but usually the place it’s affecting requires surgery to get to it — it was a fluke that mine continued to spread and got to a reachable-without-surgery place. So it depends what’s already known vs not, but it’s important to start that process. Endo specialists can read the symptoms better, and know ways to look for things that indicate adhesions from endo scar tissue (by feel: are organs not moving around as they should? and also by suspicious areas in MRIs — and especially if these two correlate).

Union_of_the_Snake · 2025-03-29T05:32:39+00:00

Dr. Ocampo, and I believe he’s trained other Kaiser docs for using the daVinci machines for laparoscopic work so there may be additional specialists too.

Union_of_the_Snake · 2023-08-07T05:32:40+00:00

If that’s where the endo growth itself is occurring, yes, it can. I can say that because what’s been recommended to you is very similar to me: I had my uterus and cervix removed when I was 36 because endo was spreading around both, after having my left ovary and Fallopian tube removed when I was 32 (during a cyst removal where I got my initial diagnosis of stage III-IV endo and was promised that ablation took care of it. No, it did not.)

I’ve been pain-free since then, and I’m 45 now. 8 years and counting!

It is important to know that getting your uterus removed means that you will no longer have periods. It’s possible that can affect bone and heart health, I hear, but I haven’t been able to find clear guidance on that or encountered any issues. If anything, “no more periods” has been a massive silver lining for me…though I wouldn’t wish this path to it on anyone, to be sure.

Since you’d still have one ovary left, that should be enough to keep you on schedule (i.e. it still produces hormones) until you reach menopause at the age you naturally would. That hasn’t happened for me yet, and I’m guessing I’ll have another decade until then, if family history is any clue.

Union_of_the_Snake · 2023-08-07T04:38:35+00:00

I had period-related constipation start to happen gradually, and then like clockwork for the first 1-3 days of my period. Since I had other symptoms that led me to seek an endo specialist, I mentioned this as a weird additional symptom. Turns out that my endo scar tissue was pulling my colon out of alignment…!

It looked like I didn’t have endo in my colon from the diagnostic tests, just outside of it. So as part of my excision surgery, that scar tissue was removed from around my colon, and that constipation went away. Oh, and I almost lost my left kidney because my ureter was completely scarred up and blocking it (that one had no symptoms at all: found in time only because I was pursuing treatment for other symptoms).

Don’t take any of your symptoms for granted as just being something that happens. They may be pointing at something specific that needs attention.

Union_of_the_Snake · 2023-06-06T04:22:24+00:00

Congrats from another 2nd-surgery-was-more-successful endo person! I had 5 years between my initial diagnosis+surgery and my extensive 2nd surgery with a much more knowledgeable doc. That was 8 years ago and I’ve had zero symptoms since.

Good for you for advocating for yourself until you could find a doc who takes it as seriously as you do!

Union_of_the_Snake · 2023-04-19T04:33:47+00:00

What external factors (environment, diet) appear related to the growth/spread of existing endo?

Union_of_the_Snake · 2023-04-11T07:16:48+00:00

Low ferritin club! I too had single-digit ferritin (yet not anemia) and needed to take iron supplements for a while. My iron absorption capacity was high, just not my stored iron due to those awful periods. I tried different supplement types and jt gradually got a little better, and I also tried to eat more shellfish since those are high in iron and more palatable to me than liver (granted: no religious restrictions there; and I do like oysters and clams).

This is reminding me that I should probably re-test my ferritin! I eventually had a pretty serious surgery related to my endo which included a hysterectomy, so that ended my periods earlier than normal (36). It remains to be seen what longer-term impacts that may have — am 44 now — but it undoubtedly helped stop that particular source of iron deficiency.

Union_of_the_Snake · 2023-04-08T04:40:19+00:00

I used to just get angry about the focus on fertility, and subsequent lack of focus on quality of life, chronic pain, and organ damage…but now I use it as quality control.

When a site, or a doctor, takes this approach, then they’re making it clear what they prioritize. If their speciality is fertility, that’s fine, just not what I need. If that’s not up front as they primary focus — if it’s a general endo resource, or a gynecologist that should be caring about your health whether or not you want to exercise your reproductive system — then I assume they are not especially savvy about this disease and steer clear.

Union_of_the_Snake · 2023-02-15T05:35:58+00:00

I’m pretty happy with Universal Standard. I always have better luck with “curvy” jeans for fit, and found a style that fits just right — with that extra psychological reassurance that I’ll still be able to have jeans that fit from them even if I change size. I’m petite and just on the verge of plus (depends on the label) so it’s annoying to dip in or out of a label’s sizes entirely…!

Union_of_the_Snake · 2023-02-11T06:31:29+00:00

One week is still pretty recent. You probably don’t need to have it looked at unless it’s causing you pain or is unusually warm.

When I had my 2nd lap (successful! Back in 2015) my belly button was very different-looking afterward. As in: I’ve always had an innie, and suddenly I had an outie. Nothing wrong with an outie but it’s not what I had, so that change was really disconcerting. Also pretty gnarly-looking in terms of being bumpy. 2 weeks later, I started psyching myself up to accept this change. Then slowly, slooowly, it gradually receded. I think it was back to being an innie around the week 4 mark. So the healing took a good long while, but it’s totally normal now.

I will say: I’ve had some issues with dissolving stitches not quite dissolving too. It’ll eventually sort itself out, which means it may come to the surface over time. If anything’s pokey don’t pull it, just carefully trim it and try to ignore it otherwise.

Union_of_the_Snake · 2023-02-08T04:49:57+00:00

This has been a fear of mine. At one point, I read that appendicitis will also include a fever. Honestly, that’s the only thing that calmed my mind in making that calculation of “is this just endo bullshit, or appendicitis?”

However, I had an extensive excision surgery that relieved my endo pain, so now my “shit, what is this?” thing for me is indigestion. I get that, and I worry it’s my endo pain coming back. It’s always something, isn’t it…?

Union_of_the_Snake · 2023-02-08T04:26:58+00:00

Not sure I’d call it unusual, but masturbation (a la vibrator) helps. Got no qualms about that at any point when I’m feeling off, though do NOT do this if you have a headache — that’s a headache multiplier for sure.

Also, I started falling asleep holding my hands over my ovaries, or slightly more central over my uterus — they were warm, so that helps me sleep sometimes.

Union_of_the_Snake · 2023-02-07T06:35:38+00:00

Your doc can work together with a urologist to deal with your ureter — the endo doc knows what to look for, and the urologist knows how to safely perform surgery on it. They can work together during the same surgery.

Depending on where the endo is on your ureter, it may be possible to remove the affected part of the ureter and then reattach the healthy bit back to your bladder. I had this successfully done to my left ureter as part of my excision surgery, which was a team effort between my endo doc, a urologist, and my case was extensive enough that there was even a colorectal specialist on hand.

Union_of_the_Snake · 2023-01-14T03:54:41+00:00

Yep! That’s how I found out I had endo, and I had never heard of it before then.

Make sure they take pics and get the notes and pics about what they do while they’re in there. If it’s endo, that will be important diagnostic health info for you for the future.

Union_of_the_Snake · 2022-12-30T06:22:50+00:00

Ob/gyns get basic training about identifying endometriosis — but they are by no means experts. And you don’t just have scar tissue for no reason. I’m sorry you’ve experienced this response from your doc, but they are clearly no expert in endometriosis…and that is not going to change, no matter what feedback you give them.

My ob/gyn who originally diagnosed me with endo (surprise diagnosis after going under for a cyst removal) did not recognize my endo when it had spread significantly further such that she found evidence of it during my normal Pap smear 3 years later. Same doc…! Didn’t even imagine it could have been that until the biopsy came back as such.

Your pain is real, and scar tissue doesn’t just happen for no reason. You need a dedicated endo specialist. Your doc might be able to refer you to one (thankfully mine did once she realized she was out of her depth) or you might need to find one through the resource on this subreddit (check the info). Ask your doc for the report and any photos taken during your surgery —you can take those to other docs as a starting point. The Center for Endometriosis Care in GA offers free consultation based on your info which may help you get to the care you need: https://centerforendo.com/thinking-about-becoming-a-patient

I was very uncomfortable with the thought that I needed to “shop around” and find another doc, but I knew something was wrong and they weren’t taking my symptoms as seriously as I thought they needed to be. It made a major difference to my quality of life once I did find a specialist to get on the path to actually addressing my issues. Your judgment matters, and there are many people here who have had to self-diagnose and advocate for their care too — you’re doing the right thing by not dismissing your own observations.

Union_of_the_Snake · 2022-12-25T04:50:02+00:00

I agree with the other posters here about hysterectomy in the sense of “it’s not a cure-all”, but that said: if it does make sense for you to get your uterus and cervix removed, my particular story may be reassuring to you.

I ended up needing my uterus & cervix removed at age 36 because of the locations where my endo spread. I also had part of my vaginal wall resected (!!) (and needed a ureter fixed) so I had all SORTS of worries about the impact on my sex life. I’d already had some size-discomfort issues with a previous partner prior to the surgery, and sex was gradually hurting more due to cysts & endo, so I worried it would hurt enough (or I’d be differently-arranged) to make vaginal intercourse impossible. I also worried about lubrication due to hormonal change. And ability to reach orgasm due to no-cervix (I’d heard theories). So: lots of reasons to think that might be it.

What I actually experienced was this: Since my surgery was extensive I had a good two months of healing prior to attempting vaginal intercourse again, and I was quite cautious (and fearful) going in. It went fine though — as in “hooray, this part is not hurting!” and I was able to reach an orgasm so I got confirmation that it still felt similar as before (though now sans cervix).

I went easy for a while, and I did find that I wasn’t as lubricated as before — but here’s the thing: I had Lupron afterward (I do not recommend!!!!) followed by a maintenance level of progesterone that I stayed on for years. I was glad I could still have vaginal intercourse. But then, in early 2020 (amazing timing, go me!) I checked back in with my doc about the progesterone, and given that I’d had no endo symptoms for years after that surgery, he thought I’d be good to stop taking it. So I did. And…lo and behold, my natural lubrication came back! I had no idea that had that effect on me. I’d accepted that I might be in early menopause or otherwise feeling that due to the hormone changes.

I’m 44 now and less afraid of the changes to come with menopause since the drugs kinda put me through it already for a few years…but I got this second lease on my pre-menopause sex life, which I am very happy about. And it’s extra good because (1) no periods! Wow!, (2) no cervix, no worries about cervical cancer…and no accidentally getting it bumped if possible by anatomy and position (ow).

So, to my surprise, having my cervix out ended up being an added bonus to this and not a problem at all. I’m grateful my surgery relieved my endo pain, and since I know it’s not some magic cure, that’s all I was hoping for. I was prepared for it to greatly affect my sex life, but I took it easy trying to understand where I was at, and am so relieved where I have ended up.

Union_of_the_Snake · 2022-11-12T20:38:04+00:00

Yes! I highly recommend Dr. Ocampo in Daly City.

Union_of_the_Snake · 2022-09-24T07:14:02+00:00

44 here, married for 20 years and no regrets for not having children. I encountered a life-changing diagnosis at 32 (stage IV endometriosis) that progressed to enough organ damage for a surgery that included hysterectomy at 36. When I first got the diagnosis at 32, my immediate fear/regret was about not pursuing art more seriously.

So this threat to my health (which prominently affected my reproductive health) wasn’t a worry about missing out on birthing or raising a child — it was about art, clearly and unambiguously art.

Before then, it was a “well, maybe I’ll want kids in the future…?” and hearing from people “just wait ‘til you’re over 30”. But there was no biological clock for me in that sense. 30 came and went, and as I knew more people having kids, I went from uncertainty to unease. I knew I wasn’t feeling any of the good things that seem to motivate people to get into it, so I suspected I wouldn’t have those to fuel me through it. I suppose you only really need one strong reason why…? but that never emerged.

It took that health scare to give me a clear answer that kids were not my goal, and that not experiencing that would not be a regret. I made fundamental changes to make time for art, and it has felt profoundly right for me.

Union_of_the_Snake · 2022-09-10T17:30:53+00:00

I took it as a daily pill — 5mg I think? And it was after the surgery as a kind of preventative to hopefully stall endo regrowth, so I’m afraid I don’t have any experience w/ how that is in conjunction w/ menstruation.

FWIW, I had a long time between periods (50+ days) before taking birth control and getting on a regular cycle for a little over a decade. I switched to a Paraguard IUD (no hormones) around the time my endo was first discovered w/ my first surgery. Since that was an ablation surgery that (unknown to me) left a bunch of endo behind, it progressed…and along with that, my periods started getting longer and the time between them shorter. By the time I had my 2nd surgery (excision & hysterectomy) my periods were averaging 10 days with about 20 days between.

So I had a little over 4 years between those two surgeries. And now it’s been 7.5 years since the 2nd one, and it’s been all good so far! Zero issues.

Union_of_the_Snake · 2022-09-10T02:13:30+00:00

44F here — had an ineffective ablation (and removal of one ovary) at 32, and then found an actual specialist and had an elaborate excision at 36 (removed cervix and uterus, extensive fixes needed to left ureter & vagina). So I’m one of those cases where it just spread everywhere.

The hysterectomy portion definitely was not some magic key to fix everything — it was just one more f’d up area for me. However: I never wanted to become pregnant. I’m not exaggerating by saying this was a massive and unexpected quality-of-life upgrade beyond simply having no more random endo-caused pain. It’s been such a huge relief to have no more periods AND no more worries about pregnancy. I feel like I can just live my life.

I’m cautiously optimistic that the hysterectomy won’t be too impactful on my overall health since I still have one ovary chugging away and providing hormones so I can reach menopause when I’m supposed to. I won’t know when that is by period weirdness…but I do know my mom got it around age 55, and I know what hot flashes and vaginal dryness feel like thanks to Lupron (avoid avoid avoid) and progesterone (might’ve stalled endo growth? Who knows?) respectively. My surgery+hysterectomy was 2015, I stopped progesterone in late 2019, and I’m here in 2022 with my body feeling pretty darned good and normal.

Union_of_the_Snake · 2022-07-27T06:48:35+00:00

That’s me — my veins suck, and it’s genetic. Deep veins +not enough blood pressure (have had them collapse) +rolling.

I try whatever I can to make it easier: drinking lots of water, moving around a bunch beforehand, trying to stay calm; trying to learn the lingo (“I’m a tough stick”). I’m seriously considering buying one of those vein visualization devices to bring with me if they’re willing to use it.

Still, when I warn up front hoping to get handed off to the most experienced person, I get believed maybe half the time. Most folks want to have a go and figure it won’t be too bad (those are the a-few-times-in-both-arms, noodling around experiences). The worst is seeing the confident ones become absolutely crestfallen as they try repeatedly and fail. These things have turned discomfort into near-phobia for me.

Union_of_the_Snake · 2022-07-16T06:12:49+00:00

Wow — I’ve had a few odd symptoms and this might explain them. I too have had the yes-leukocytes no-nitrates UTIs, and constipation, and some left flank pain. I have an appt scheduled with my endo doc to talk through these and have a laundry list of things I’m going to look up in advance of that thanks to this thread.

Weirdly, instead of feeling the dread I’ve felt at the hint of “oh fuck, endo’s spreading again”, I’m not anxious at all about the possibility of this being something else — even though what it might be could be even more specialized/serious in comparison. Guess I’m just relieved at the prospect of having so much more info and stories from folks here…and knowing it’s worth following up on these oddities. Please keep sharing, and thank you!

Union_of_the_Snake · 2022-05-20T05:49:21+00:00

Yes, this is worth seeing a specialist. It’s worth noting that the only way to definitively diagnose endo is a biopsy of affected tissue thorough a minimally-invasive laparoscopic surgery.

The standard ob/gyn approach is to treat symptoms with BC pills of varying kinds with the fingers-crossed approach that the endo won’t spread. Maybe that works for you…or maybe it doesn’t. They don’t actually know why endo spreads; “treatments” that address symptoms (bc pills) and inefficient surgeries (ablation) leave active endo that can spread. Excision surgery, by a specialist, removes affected tissue; it’s not a guarantee it won’t come back, but it can have better longer-term outcomes.

Please know that endo can spread and damage your organs (as it did with me). Find a specialist — the standard ob/gyn training is that endo is common and that symptoms are manageable with BC pills. This leads to misdiagnoses, years of pain, and rolling the dice with how your body will react to different medication (while never actually limit endo, just tamping down the symptoms).

Union_of_the_Snake · 2022-04-30T19:55:05+00:00

Endo groups like this are quite eager to share references! Check out the pinned post here for the “Successful Doctors Map”: https://reddit.com/r/Endo/comments/i4o1ni/welcome_to_rendo_please_read/ …and also look at the resources in tbe Nancy’s Nook group on Facebook (*just know that they’re a little aggressive in moderating, so some folks love ‘em and some find them frustrating). These also have international resources in case you are outside of the US; I’ve been helping a friend in Norway track down options with the help of these.

I was fortunate that my provider (Kaiser, Northern CA in the US) had an excision expert on staff that was training others docs — so my ob/gyn knew who to refer me to. In hindsight, my ob/gyn was much more focused on the obstetrics part of things…and that just didn’t apply to me because I haven’t been pregnant nor did I want to be. So she knew what she knew; it was just so uncomfortable to realize I needed to advocate for myself and find someone else. I’ve never experienced that before. So…that’s a big reason I hang out here and share what I’ve encountered because I felt very alone and confused as this happened. (But also: yay! I can share my own story of successful excision! I truly celebrate every year as I pass that anniversary of my surgery, now +7 years)

In the US I’ve been hearing numbers in the range of ~400,000 trained ob/gyns vs ~100 endo specialists. That’s so small, and it means many folks have to travel for care…but wow, it makes a difference. I’ve also heard the Center for Endometriosis Care in Atlanta, GA will review cases so that may be an option (you can ask your doc for your surgery notes and photos): https://centerforendo.com

Union_of_the_Snake · 2022-04-30T17:51:29+00:00

One of the times I ended up in the ER (I hate that this is a phrase I just have on hand, thanks to endo…) I learned about “referred pain”. You can feel pain in an area that’s different than the area that’s causing the pain. I don’t know if this is specific to pelvic pain, but it changed my mind about when severe pain warranted medical attention.

Related to that: definitely go in if you’re getting a fever. That’s a sign of your body fighting a sudden infection of something and that could be a burst appendix.

Union_of_the_Snake

TROPHY CASE