Endometriosis caused that?!?
March 7, 2017 6:11 PM   Subscribe

What things did you realize were related to endometriosis after you got treatment? How much had it messed up your stomach or gave you nausea and pain all the time? Did it get better after surgery or treatment? How was the surgery?

Last I talked to them my GP and OBGYN are pretty sure I have endometriosis. I have all the symptoms, negative ultrasound for other issues.

It’s a catch 22 issue where I’m feeling too sick for a surgery that will likely make me feel less sick.

So I’d like to know, did you also have stomach issues or nausea or other things that resolved or got better following surgery? What about bloat? How was recovery from surgery? I have an appointment with my GP next Friday.

Complications :

-Lots of health issues including POTS and stomach problems (so some of it is just "me")
-I’m currently on the super restricted candida diet and slowly adding in foods so my diet needs to be better before surgery.
-I’ll need to for sure add in multiple foods prior to surgery and figure out a timeline for that.
-I have to figure out toughing out surgery to feel better or if there’s anything else I can do first.
-I’ve explored all other stomach issue options as far as I know.
-I can’t handle hormonal birth control for treatment.

My issues include very low bloating (right above pubic bone), tearing/ripping pain in my lower right by my ovary and sometimes on the left, nausea spells, feeling like my insides are in knots, dizziness, headaches, and menstrual cycle problems. They seem to go with my cycle. For example I was very sick last night, woke up after an hour of sleep with a tearing pain in my lower right and pain shooting to my back with every breath- according to my tracking app I’m ovulating. It’s gotten worse over the past year or two.
posted by Crystalinne to Health & Fitness (16 answers total) 4 users marked this as a favorite
Prior to the surgery, I was in pretty hideous pain three weeks out of the month. Post-surgery, everything was 100% better. Literally, I woke up and realized that an endo-related sensation in my lower left abdomen was just... gone.

The surgery wasn't terrible to recover from either -- the worst of the pain was a sore back from sleeping so much the first week. I took an advil for that, and didn't have any need for the other pain meds. I had a robot-assisted endoscopic surgery.

A+++ service! Would surgerize again!
posted by Blue Jello Elf at 7:09 PM on March 7, 2017 [3 favorites]

In my fatigue I also forgot to mention I have had my gallbladder out, so comparisons to that surgery will be helpful. I lived through that before I was even diagnosed with POTS but I know how much surgery can suck.
posted by Crystalinne at 7:11 PM on March 7, 2017

I strongly recommend that you join 'Nancy's Nook' page on Facebook. It is a evidenced based information group for women with endometriosis. I wish I'd found it years ago, even though I did a lot research myself.

I think surgery is the best option for endo IF it is done by a highly skilled endoscopist who performs excision surgery, NOT ablation. Nancy's Nook has a list of carefully vetted surgeons that should be your starting point for finding surgical help. This surgery is the only approach with long term benefits and far less or no recurrence of the disease. Many surgeons advise their patients to start hormone suppressants like Lupron or zoladex. I can tell you from personal experience, and the chorus of research that shows these expensive drugs cause more harm than good, that these are terrible drugs with short term and very long term consequences. E.g. Bone loss, (I now have osteopenia), psychological side effects, early menopause, sexual dysfunction, ovarian reserve loss etc.

The thing that empowered me most with endo treatment is taking the time to find the right surgeon. If any surgeon says: 'get pregnant, pregnancy solves endo'' 'get a hysterectomy, hysterectomies solve endo' 'get psychological testing/ have you suffered sexual violence' 'only Lupron takes the disease away' - find another surgeon. All of these things are shown, via evidence based review, to be very incorrect.

The right surgeon will talk about the process of painstakingly removing all of the disease, will have the skills to excise deep endo, not just black spots, and will make you feel believed not psychologically damaged. This surgery is long, several to many hours long. An investigative laparoscopy will probably be advised, as this is the only way to diagnose endometriosis.

You asked about other endo things that may not seem endo related so here's a few well known ones: dyspareunia (pain with sex) pain with orgasm, or post orgasm, bowel issues, ovulation pain, pain with urination, pain with bowel movements. It can also present with interstitial cystitis. Of course, endo and any long term pain causes depression and anxiety. I experienced hydronephrosis and lost the use of one kidney.

Deciding to have surgery is a multi step approach - I WISH so much that I'd spent the time finding the right surgeon, not going with my local ob/gym who made things worse. Scar tissue causes painful adhesions and become further sites for endo to cling.

Anyway, join Nancy's Nook. Nancy Petersen is one of the strongest advocates for endo care, research and information dissemination I've encountered. When you join, read the introductory material and links. Education, then surgery.

(I have stage IV endometriosis and 'frozen pelvis' - I have had ~13 surgeries, three rounds of hormone suppressants. I've been around the block with this illness. Feel free to memail me if you'd like to ask more)
posted by honey-barbara at 8:36 PM on March 7, 2017 [20 favorites]

Not personal experience, but that of my best friend -- after a lot of frustrating attempts to diagnose and treat her digestive system problems, she got it diagnosed as endo and had surgery. Endo surgery cleared up much of what had presented as GI issues. Worth checking out.
posted by gingerbeer at 9:27 PM on March 7, 2017 [1 favorite]

Pretty (100%, actually) sure endo shows up on ultrsound. I got yearly ultrasounds to confirm it did not return for about 5 years after surgery.

Some of what you describe sounds like scar tissue from your surgery, or like there was some mistake made. Get a CT scan or MRI of your abdomen, don't schedule surgery if you don't need it or for the wrong thing!

I'm serious.
posted by jbenben at 10:28 PM on March 7, 2017

I appreciate the concern for having unnecessary surgery, but I'm 99% sure it's endometriosis. My gallbladder surgery went beautifully with an amazing surgeon and the pain is no where near the surgical area. I literally have all of the symptoms of endo, horrible irregular periods, clots, cramps, all of it. I didn't get halfway through my symptoms before my OBGYN said "endometriosis." I only did an ultrasound to rule out cysts. Ultrasound is not a diagnostic tool for all forms of endometriosis. My symptoms cycle with my hormones.
posted by Crystalinne at 10:39 PM on March 7, 2017 [2 favorites]

Yep, I think you know you have endo, so now find the best endoscopic team you can. Recovery times would be similar to gall bladder surgery, but no sex for six weeks, and a few stitches in the umbilicus that need to be kept clean until they dissolve, don't drive for a week, and definitely don't lift things/ push a vacuum cleaner/ shopping trolley around for awhile. The most frustrating pain immediately post surgery is the referred pain from gas pumped into the pelvis to aid visibility and access during surgery. Getting up and gently walking around, wearing a few heat packs will help. Give your body the best chance to heal by resting and don't go crazy exercising beyond progressively longer walks. Your first period post surgery could be terrible. I'll warn you, but don't panic that the surgery didn't work. A lot happens in excision surgery and a lot of healing is taking place for many weeks later.
posted by honey-barbara at 11:35 PM on March 7, 2017

With adding things to your diet before surgery, is that because you're concerned about hospital meals? I had abdominal surgery and had to be on liquids only and I'm strictly gluten free and the hospital knew and could cater for me (broth basically). I just thought I'd mention that in case it helps take something off your plate (heh) prep-wise.
posted by kitten magic at 2:50 AM on March 8, 2017 [1 favorite]

Endometriosis does not always show up on ultrasounds, or so I've been told. Some can be felt, some is hidden, some is only discovered once they go in. Also, the size and area of the growth does not directly correspond to your pain level, meaning that small lesions can cause more pain than big ones for some people.

Other than that, everything that honey-barbara said.
posted by LoonyLovegood at 11:03 AM on March 8, 2017 [3 favorites]

Nthing it doesn't always show up on ultrasounds. I too have endo – gushing periods where I wondered where all the thick stuff was coming from (like seriously, as a kid I panicked a few times that I'd somehow gotten pregnant as a virgin and was having a miscarriage), absolutely wrenching pain that max doses of ibuprofen merely dulled to "being punched by a baseball bat" as opposed to "being punched by meat cleavers", all sorts of GI issues no one could figure out, and as I've told the story many a time here, ending up with a torsioned endometrial ovarian cyst that burst and nearly killed me. So yeah.

When the cyst was taken care of, they cleaned up other parts as well and put me on a mild Pill to see how that went. Well. All of a sudden I knew what life as an adult without crippling pain 25% of the time felt like. As well as life with vastly improved (but not entirely cured) GI issues.

The GI issues finally went entirely away three years ago, when I changed gynos and my new one put me on a medrogestone pill, which she said she'd seen great results for women with endo. This ended up being true for me too. Don't rule out all hormones, you might just need the right one at the right dosage. But, I do entirely validate the "hormones do not work for everyone with endo". Just, in the case that they might, it's worth looking into.

As for the surgery, oh my goodness go for it. The surgery pain's easier to deal with than endo period cramps, and you'll have relief.
posted by fraula at 12:38 PM on March 8, 2017 [3 favorites]

Lupron is a hormone suppressant, not an add in like progesterone. Birth control pills do help with many aspects of endometriosis. But they are NOT treating, preventing or arresting the infiltration of the disease.
posted by honey-barbara at 1:53 PM on March 8, 2017

honey-barbara, now I have to disagree with you on something: A was prescribed a gestagen-only pill (that is technically not a BCP, even though it totally is the same as a mini pill) to prevent me from ovulating and bleeding so the endometrial tissue won't spread any further each period. I was even told they wouldn't do surgery until I'd been on that pill for at least six months because they couldn't go in unless some of the stuff dried out a bit. I was also told that after surgery, it may come back with every period, so I'll be on that pill indefinitely.

As far as I know, the reasons why endometriosis develops are still unclear to doctors, but they suspect that endometrial tissue flows in the wrong directions during menstruation, thus menstruation = risk for more endometriosis.
posted by LoonyLovegood at 4:17 AM on March 9, 2017

Oh my, sorry to bicker with another poster but PLEASE OP, go to peer reviewed research on this.

Roundly de-bunked is the 'retrograde menstruation' concept.

And yes, many many many surgeons (such as several of my own) will say the whole 'dry out endo' with hormones but the leading research on endo treatment is that this causes more harm than good. (E.g., it makes endo lesions harder to see during skilled excision.)

Good doctors to follow are Dr Tamar Seckin Dr Jeff Arrington and again, any on the Nook list.
posted by honey-barbara at 4:36 PM on March 9, 2017 [1 favorite]

Thanks everyone.

Actually Dr Jeff Arrington is near me! I'm near Salt Lake City! (I googled the best surgeons after posting this.)

I'll go to my consult with my GP and see if I can get in with him. (I've also joined that FB group.)

I think my current plan would be to do a scope and some minimally invasive lasering then make a plan for a more invasive resection. I am absolutely not healthy enough for anything beyond a mild outpatient procedure but I need to get some relief and get started on a healthy path with less pain and problems. I obviously don't want more than one surgery but I NEED to get some relief from this.

As far as health and diet I'm literally eating about 12 foods right now on this restricted diet. So regardless I need to add things back and gain some weight even for an outpatient procedure regardless.

Please feel free to continue to comment or message me!
posted by Crystalinne at 7:31 PM on March 9, 2017 [1 favorite]

Also, I definitely don't want any hormone-anything. My body really hates medications. I was severely depressed on HBC.
posted by Crystalinne at 7:32 PM on March 9, 2017 [1 favorite]


I'm 3 weeks out from resection surgery with Dr. Jeff Arrington.

I have stage 2 endometriosis. He removed multiple lesions. They also removed my appendix which showed signs of acute appendicitis. He also drained some quite large ovarian cysts.

I'm not out of the woods yet - still healing and the first few cycles can be really bad - my first period just started a few days ago - plus my other health issues. BUT I can see some light for the future.

He also said there's a slim (less than 15%) chance of needing surgery in the future since it wasn't damaging my organs. So I'm hopefully through the worst of it - at least for now.

Thank you to everyone who answered. Also feel free to message me if you want to watch my surgery!
posted by Crystalinne at 3:36 PM on June 26, 2017 [5 favorites]

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