Take my uterus, please!
April 27, 2015 10:14 AM   Subscribe

So, what data do I require to backup my feeling it's time to have my uterus removed and show the gyn (newish to me) that it's time and the insurance company to pay for it while I've got insurance?

I've read lots and lots and lots of threads here about female troubles. I've had ablation (that's not me) and I'm delightfully sterile and done having babies finally having hit the magic age of "all the kids in school" and am nearing forty.

But it's not enough. I may no longer buy menstrual products (yay ablation) but I still suffer (also not me) tremendously. I don't have fibroids. I am overweight. I don't suffer from endometriosis that we've noticed.

But for two or three weeks every couple of months I swell up and am limping in pain, constipated and exhausted. My uterus cramps noticeably in the middle of that two-to-three week time period for a couple of days, but it starts with a twinge that progresses to a limp and then a couple of weeks later the pain is winding down and the constipation wears off.

I'm not depressed (was years ago but am no longer) and no longer on any antidepressant medication. I had crushing exhaustion and brain fog for the better part of a couple of decades that was labelled and medicated as fibromyalga but is not, apparently. I've managed to lose most of the exhaustion, brain fog, and chronic pain and have with my Primary Care Giver's guidance gone off all of my meds. For most of the time now, going on several months of careful charting, I feel pretty fantastic and am losing weight. PCG is fine with me having the surgery (has kept an eye on all my thyroid and other levels and they've always been fine) but is not the decision maker on this surgery.

But yes, I feel great. Until my "cycle" kicks in. Then I sleepwalk through life, limping through the exhaustion and pain. It wasn't until this latest go round that I remembered to track it carefully, so once I finally see the GYN in early June, I'll have maybe three months of data that say: I feel fantastic until my uterus starts shredding me slowly for two to three weeks.

What is a GYN and by extension the insurance company going to need to know? Yes, fat, yes, losing weight. Yes, has children, yes, done having children. Yes, has no other issues. Yes, can demonstrated for [x] amount of time that this is the only thing ruining my life. Anything else? Ideally I'd like to have it done in the fall, give me a little more time to lower that BMI closer to "merely overweight".
posted by ute there it is to Health & Fitness (13 answers total) 3 users marked this as a favorite
Constipation and debilitating pain are major signs of endometriosis. I feel like if you go to the ob with this history they might suggest surgery to see what the problem is, and perhaps removal of your ovaries which would stop your cycle. There are also hormonal treatments that can eliminate your periods. However they may be less inclined to remove your uterus, just based on what OBs have suggested to me.
posted by internet fraud detective squad, station number 9 at 10:20 AM on April 27, 2015 [2 favorites]

Are you sure it's your uterus cramping? Constipation can cause severe cramping as well, and as you know, is affected by your cycle. If I were you, I'd be more worried about my hormones and my guts than my uterus.

Also, you could have endometriosis on your intestines...it can pop up anywhere. Although if it's not in your uterus, I don't know whether it's possible or not that it would be elsewhere...maybe it's worth finding out.
posted by serena15221 at 11:36 AM on April 27, 2015

Based on my mother's medical history, my gyn offered me a transvaginal ultrasound and found endometriosis. The procedure wasn't particulary uncomfortable for me. I was not having any significant symptoms like the things you are, but looking under the hood was helpful. (In my case, a hormonal IUD helped with the problem of the thickening uterine lining.) If you've had ablation, then people have scoped out the inside of your uterus already?
posted by puddledork at 12:19 PM on April 27, 2015

Do you have polyps or endo? Both these things can cause terrible periods. What kind of testing, if any, was done before your ablation? How did they rule out the fibroids?

Were your kids delivered vaginally or c-section? There have been a few studies on incisional endometriosis, which would attack the abdominal area; it's apparently fairly rare but it can happen.

What are your ovaries up to? Have you ever had cyst issues?

wrt dealing w/insurance companies: I ended up with severe adenomyosis, which would have made an ablation worthless for me, although that's what I originally requested from my doctor due to insanely heavy agonizing periods of terrifying duration. Since there were other options technically open to me, such as the placement of a hormone-releasing IUD, I was really afraid my insurance company would refuse to cover my hysterectomy. My doctor assured me that it would not be an issue and she was correct, although I did end up paying about $1,200 out of the total 25k in various fees and copays. I didn't deal directly with my insurance company in any way, my doctor's office(s) handled everything with official diagnostic codes and whatnot.
posted by poffin boffin at 12:21 PM on April 27, 2015

the most important thing to remember is (barring insurance company issues/restrictions) you are not forever wedded to your doctor. if you don't get your desired results from one doctor, there is no reason you should just accept it without getting a second or even third opinion.
posted by poffin boffin at 12:23 PM on April 27, 2015 [1 favorite]

Response by poster: Thanks, all, so far. You folks bring up some great points.

Never considered endometriosis. I only know I feel so bad now because I feel so good now when I'm not 'cycling'. In the past it just seemed like "more of the same" but more intense for a few days. Now it's like getting hit by a bus for two weeks because otherwise I feel like little birdies and mice surround me, flowering my path and brushing my hair and singing merry tunes in my ear.

Not thread sitting! But. Just got word that my non-fasting post-lunch blood sugar was a little high (170, probably a couple of hours after a sketchy carby lunch) so I'll watch that over the next few weeks and get a little more balance into my diet. Otherwise my PCG's blood tests came back normal.

Periods pre-babies were always hard and horrible and painful and majorly bleedy. During the hormonal birth control years, horror movie clotty.

My "current" OB has seen me once for my "yearly" a year ago. I've had a dye test with him to confirm that ablation left me sterile as a first step to figure out if I should go ahead and get my tubes tied. I did not have to get my tubes tied and he was very against tying my tubes as a first option if I weren't sterile -- but the test confirmed my sterility. The dye test included a trans vaginal and uterus area ultrasound. But they were only looking for dye.

I was diagnosed with fibroids as a teenager and put on birth control pills. The diagnosis was based on excessive bleeding and the use of a very rudimentary ultrasound machine that probably ran on punch cards.

Post-c-section reports from my random OBs (probably retired) indicate no issues or fibroids in my uterus or anywhere while they were in there poking around. I specifically asked. Of course that was ten years or more ago now, things happen. But no one has ever diagnosed endometriosis (wouldn't they see it while my uterus was inside out?) or polyps or cysts.

But I've always been constipated cranky during my cycle. Since the ablation it's been limping hard that's been added. Like my whole lower back and leg on one side just swell up and hurt like hell. And my brain and energy are sucked away by this giant leech.

Pre-ablation I could drink lots of tea to warm my uterus and calm it and pamper myself a couple of days. Now it goes on so long that's not much of an option and tea does not help my leg and back.

This time through I have been on a very regimented diet (basically eating the same thing for breakfast every day, for lunch every day, for dinner every day, for months) so I'm pretty sure I'm not (as the googles suggest) "eating something different when I'm cycling and causing constipation from food".

So I'll take this to my current GYN, and I can fall back to the one who did the ablation if that's something she does. Or ask my PCG for a recommendation.

Fun fact: My spellchecker wants to substitute optometrists for endometriosis.
posted by ute there it is at 1:43 PM on April 27, 2015

I had post c-section endometriosis in my c-section scars. It was not in my uterus. My uterus was the picture of health. But the pain from the endometriosis got worse every year, and it was incredibly horrible. The first doctor who operated on me actually removed my uterus (although it was fine and healthy) and one growth but somehow missed the others. I had to go to a different doctor to get the rest of the endometriosis removed a year later.

If you've had a c-section, by all means have them check your scar tissue. I could feel the stupid growths every time I cycled. I mean, they were the size of chicken eggs by the time they removed them, which was about... oh... 18 years after the last c-section because it took that long to convince the doctors something was, indeed, wrong. This may not be what's wrong with you, but it doesn't hurt to check.
posted by patheral at 2:47 PM on April 27, 2015 [1 favorite]

Okay, 10 years ago is not at all a good scale to measure your current uterine lady health by! Absolutely get assessed for fibroids, polyps, endo, anything you can get your doctor to test for. Hideous chunky copious clotted horror movie periods were my experience and it got worse and worse every year but slowly enough that I kind of didn't realize how bad they were getting compared to how they'd been 10 years previously.

Anyway huge chunky clots can be indicative of endo and/or adenomyosis, the latter of which can't really be diagnosed by just an ultrasound. And believe me, if you'd had a uterine biopsy in the past you would remember it very well. Constant pain and pressure in the lower groin that causes leg pain can be indicative of fibroids. If they are big enough you can actually see them poking out of your lower stomach, but they can hide pretty well in the lower belly chub that is our genetic destiny.

The low groin pain/pressure can also be from polyps, if they are the kind that protrude from your cervix. Do you have any pain during PIV sex? I had it on and off for a couple of years and assumed it was just a cervix sensitivity issue, and no gyn appointment ever caught them in the act, so to speak, because the amount they protruded fluctuated depending on the time of my cycle.

If you've had an ablation and you have adenomyosis that was not detected before the ablation, you would be experiencing many of the symptoms you currently have. All 4 of the doctors I saw agreed that an ablation in a uterus with adenomyosis would lead to increased and severe pain.

What you need to do is go to your doctor with a written out list (email it to yourself or whatever, print it out if you have to) of each symptom, no matter how irrelevant it seems, and be as graphically detailed as possible. For example, just saying "i have heavy periods" got me nowhere; it wasn't until I explained that I had to wear super tampax plus pads because huge thick gooey clots of blood would slide down the string and ruin my clothes and sheets that my doctor was like "okay that's not right at all".
posted by poffin boffin at 6:09 PM on April 27, 2015

A lot of this really describes my early experience with endometriosis. Other posters have covered a lot of what I want to say, but keep in mind these things, too: 1) Definitive diagnosis is only possible through surgery; even extensive endo may not be seen on an ultrasound; and 2) Even if they opened you up, if they weren't looking for endo, that's not a guarantee that they would have noticed it. One of the weird things about endo is that your level of pain is not correlated with how much endo you have. You might have only a little, and maybe in a weird spot, and still have lots of pain.

Best wishes to you and I hope you get this figured out. One more fun* fact: most women who have been diagnosed with endometriosis suffer for years and years and years before they have a diagnosis.

*not fun
posted by fiercecupcake at 6:38 AM on April 28, 2015 [1 favorite]

I just had a complete hysterectomy 3 weeks ago, it's amazing. I'm 42 and had awful cramps, swelling, constipation but not a lot of bleeding. Once they got in there I had severe adneomyosis which was presenting atypically. I had horrible adhesions on my bowels which is why it would hurt to eat so much and also caused the swelling. I had a transvaginal ultrasound with a blood flow study which showed small fibroids, that was enough to get insurance to pay. The surgery itself was laproscopic and they used the DaVinci robot. I'm already back to work and I already feel better. I may have been lucky Gyno wise because I just flat out asked her if I could have the surgery and she said "sure".
posted by yodelingisfun at 11:58 AM on April 28, 2015

Response by poster: No polyps I'm aware of. No pain from PIV sex.

The doc on his quick yearly exam didn't feel anything out of place. His first suggestion was the pill. No, I haven't had blood clots but I did trip the blood clot blood work back in the day + they make me crazy. Then the IUD (scroll up on my chart, buddy, you confirmed there isn't room in there to swing an ovum last year), then he said he doesn't do them but wrote me a referral for a surgeon.

Guess I could have called the office for that and saved myself a six week wait to see this new guy. Argh.
posted by ute there it is at 5:36 AM on June 1, 2015

Response by poster: New guy says yes, endometriosis and adenomyosis. Take out many many things, leaving the right (Cysty! Who knew!) ovary. Did a trans vaginal ultrasound and I reported the tissue party going on in my uterus based on the hysteroscopy and the camera a doc shoved up in there once (cool but OW and the tech who did this week's ultrasound was amazed I was awake for it).

Anyone keep or not keep their cervix? I'm doing the googles, but ...

Doc says that leaving the cervix makes the surgery different, a biopsy added, means less chance of post-surgical bladder issues, also increases chance that during the "chop out" phase of the surgery they might spray cancer cells (if there, no indications) everywhere internally. FDA issued a warning about it as well.

Souuuuuuuuuuuunds like losing the cervix is a mostly 'safer' option. So I'd only have Right Ovary remaining, everything else coming out. 8 weeks no sex, 8 weeks out of work (once the arguments with the insurance companies are settled).

Anecdata, please?
posted by ute there it is at 11:37 AM on July 2, 2015

I got rid of my cervix and it's rad, no more pap smears ever again! The reason for this was not because there was anything wrong with it but because that's how they get the uterus (and whatever else is coming out) out vaginally instead of through an abdominal incision.

I had a laparoscopic removal of uterus and tubes and cervix. My only incisions were two lower abdominal ones and one in my navel, plus the stitches where my cervix used to be. The recovery time for me was 3 weeks out of work and an additional 3 weeks away from the gym, although the third week out from work was really just be being lazy.

Don't let anyone talk you into morcellation of your uterus et al for ease of removal via a navel tube. This is apparently a pretty bad cancer risk, as it's the thing that can spray bad cells around all over the place. Every doctor I mentioned it to made a horrible face and said "we don't do that here".
posted by poffin boffin at 1:06 PM on July 2, 2015 [1 favorite]

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