How do I decide between the pill, a test, and a surgery?
November 27, 2009 9:31 PM   Subscribe

We're still not too sure what's wrong with me. I know you are not my doctor but the decision has been left to me for the most part right now. Should I consider the CT, change pills or go straight for a Laparoscopy? Possible causes we've talked about: gall stones, hemorrhagic cyst or endometriosis. Long background and possibly TMI. If anyone has dealt with any of those three, I could use some advice.

My doctor has mentioned that she's ready for the surgery when I am. Today has been a very painful and tiring day so I'm just about ready to say yes but first I need advice on whether I'm making the right choice based on whats going on.

I've had incredibly painful periods since I was 16. Among other symptoms, I get absolutely horrible cramps, occasional side pains and back ache with the back ache being the worst but with all the other menstrual stuff I'm usually to the point where I feel like passing out and would gladly take that for the next week. The pain used to start a day before and would stay for two or three days after. I have never really responded to OTC pills, or back stretches and exercise and heat only does so much. I've always had regular cycles some being heavier than others but pretty uniform.

I started the pill ( a low dose pill called Levora) from a clinic in December of 2008 prior to getting with a Doctor. I was fine for the most part but my periods were still pretty bad. Maybe a 7- 9 instead of a full blown 10 (want to pass out from pain) every time.

July 29th I had the worst pain ever in my left side, some in my right and my back pain started up. So much so that it was incredibly hard to drive 40 minutes home without near tears. I figured I was getting my period due to the back ache and thought nothing of it though I couldn't explain why my side pain was worst than it had ever been. When my back pain didn't go away after my period was ending (side pain lessened), I found a doctor (Aug 5th)who prescribed pills but didn't think it was odd that I felt too bad to walk upright and didn't find any nodules that made her think it was endo. I held off on the pills, found a new general doc (aug 20th) who told me to go ahead and take the pills (off brand of ortho tri cyclen) and I got a non transvaginal ultrasound which showed a cyst on my left ovary.

I couldn't sit, stand, laugh or lie down the first week of the pill but it got better and I was later able to walk but the back pain wasn't gone. The pain in my left side comes and goes even now.

My next appointment was somewhere in early September with the same doctor who then referred me to an OBGYN who started me on Loestrin24 in mid October since my back pains had still not stopped (it lessens on some days but hasn't stopped at all since July) with an even higher dose pill. She mentioned endometriosis being a concern. My guess is because I feel worse when my period starts or when I'm not on any pills at all but a she also mentioned gall stones.

I don't have problems eating, peeing, the back pain goes everywhere but never leaves my lower back especially my left side. I've read on gall stones and though my mother has had them I'm not sure my symptoms line up. I have had a ton of pain in the right lower front but more than anything its on my left lower front if its in front. Lower back especially left never goes away.

I saw my Doctor last Friday, changed pills and am now on Seasonique in order to cut down on how many periods I get. I've been on it a week and my pain, while better for a few days at the start, has not really improved as much as we were hoping. I can walk upright for the most part on most days (today and yesterday were not one of them) but the pain persists. My initial plan was to give it two weeks in case I react the first week like I did with the other pill.

I had a transvaginal ultrasound done Friday also. My right ovary is fine but she wasn't able to get a good enough picture of the left. Again she mentioned endometriosis but also brought up the possibility of a hemorrhagic cyst.

I don't know what would be smarter to do now. While she seemed like this wasn't just a normal, here take your pills and it will go kind of problem, she didn't immediately usher me out for surgery.

I've written all that to ask what direction it would be smarter to move in. You are not my doctor I know that and I intend to check with her next Friday but I am not sure if getting a CT would show anything or if I would waste money, if changing to yet another pill with a higher dose would be smart, if I should not delay this in case its something serious and if surgery is the best option or all of them together. She mentioned gall stones and getting a CT. She mentioned endometriosis and the cyst and said she's ready for surgery when I am. I have an appointment scheduled for January 22nd but I'm not sure I can go that long. I don't respond to anything OTC, never have but I recently tried it all again and was given Darvocet but was told to take it when I was not going anywhere or driving for the day and only when the pain is a 10 like today. I couldn't do it with the holidays and travel but I plan to do so tomorrow. Other than that I was told Motrin 600mg every 6 hours but thats yet to kick in and its been about a week.

Also my uterus is not tipped.

Has anyone been through anything similar or have advice on what I should do from here?

Sorry if this is scrambled and long.
posted by grablife365 to Health & Fitness (14 answers total) 2 users marked this as a favorite

I went to 8 million doctors in my early 20's. Was pretty pissed off when I was finally diagnosed with endometriosis via ultrasound (new doctor) and (finally!) had a laparoscopy the following week.

The laparoscopy helped. Not totally.

I also found that taking an OTC the second I had a pain twinge prior to my periods post-laparoscopy pretty much ended the pain for the duration of my menstrual cycle - i.e. - no more meds or pain. BUT - if I let it go, arrrrggh!! It almost felt like I was re-training my nerve reactions. 15 years later, I probably have pain and take the OTC's 4x per year? Not often.

If the surgery is a laparoscopy - do it. Do It.

They go in through your belly button, correct stuff. Get the CT if you are unconvinced this is endometriosis.

Good Luck.
posted by jbenben at 9:55 PM on November 27, 2009

PS - the pill/hormones never helped. I stopped taking it 5 years post-laparoscopy with no ill effects. Except for the pill side-effects, which kinda sucked long-term (and why I stopped taking it.)
posted by jbenben at 9:58 PM on November 27, 2009

that back pain sounds like what i had when my ovarian cysts/tumors were causing the ovary to rotate slightly and caused all kinds of back pain. which, i realized later, was why the back pain never seemed to respond to OTC meds or heat or anything like that. carefully sleeping on my back with my knees up and pillows under my knees and hips so that my spine was in a just-so position helped, presumably because it was providing a neutral position for my innards.

CT scans are awesome. they're not very difficult (the contrast you have to drink comes in several flavors - i suggest berry and disrecommend the banana). if you are allergic to shellfish, LET THEM KNOW as the injected contrast stuff is derived from something that has the same allergen as most folks have for shellfish. the scans give great visualization into the state of your innards.

you don't say what the actual surgery is. is it just doing something to the cysts? or a full-blown ovary removal? if this whole condition has been such an negative influence on your life, i'd suggest looking strongly at surgery.

for context, i'm a woman who has had a hysterectomy, but it was for cancer not any kind of painful menstrual symptoms
posted by rmd1023 at 10:06 PM on November 27, 2009

I'm sure your doctor has some kind of reason to suggest it, but I have gallstones, and nothing you describe sounds anything like my experiences with them (or the experiences of other people I've talked to). The pain I've had with gallstones is at the level of the bottom of my ribcage, only comes at night, and is accompanied by some mild shoulder-blade pain (!). It is also just a different kind of sensation from any other pain I've had, including period pains.

Anyway, they should be able to rule gallstones in or out with an ultrasound (mine are little, but still visible), although if you do have them, that doesn't necessarily mean that's what causing the pain (they are often asymptomatic - I've had no real trouble from mine for a couple of years now) so if you think there's more going on, keep investigating. I hope you get it sorted out.
posted by crabintheocean at 11:56 PM on November 27, 2009

I'm wondering if you've had a particularly large cyst rupture or if you have an adhesion from endo that's holding your left ovary in a weird place, with the pain coming from the other organs pulling at the adhesion.

I had endometriosis and repeated ovarian cysts. Sometimes when a cyst would break it would be so painful that I couldn't stand up straight for several days. My periods were so bad that I would have to stay home and take codeine or darvocet every month.

No one was able to diagnose me with endo using the less-invasive techniques (manual exam, ultrasounds). The ultrasounds did show the ovarian cysts, however. I was finally diagnosed with endo when I said "enough!" and had my ovaries removed. The surgeon found plenty of endometrial nastiness when he went in. My surgery was done through laparoscopy on an outpatient basis, so I suspect that a (simpler?) diagnostic laparoscopy would also be done that way. I was up and around the next day, though walking slowly, and was dancing carefully within 10 days.

I remember reading mixed reports about the efficacy of "cleaning up" endo with a laparoscopy. Apparently the misplaced tissue grows back after awhile. I opted for removal of my ovaries to reduce my (genetic) risk of breast cancer as much as to stop the painful periods.
posted by PatoPata at 12:12 AM on November 28, 2009

To give a counter point to crabintheocean.

I had a faulty gall bladder which initially only caused pain in my left side and lower back. Until the final month before the surgery I had little to no eight side pain but I did have quite a bit of ribcage pain. It felt like my ribs were bruised.

They diagnosed it with a simple ultrasound. Did they check that area on you for your ultrasound?

In the short term try to avoid ANY fatty foods for several days to a week. If the pain lessens or goes away entirely it may also point to gallstones.

Good luck. I understand how frustrating it gets.
posted by johnstein at 1:41 AM on November 28, 2009

I have very severe endometriosis and your symptoms sound very familiar. A cyst will show up on an TVS ultrasound but the other aspects of endo [such as adhesions, scar tissue etc] are not easy to see. An MRI gives a much more detailed picture - I had an MRI because I am allergic to iodine used in CT scans. An ovarian cyst is often hovering over a complex set of nerves that travel up and down that side of the body. I have debilitating pain from my loin to groin and often down my leg on that side, so your description of that pain also sounds like my endo pain.

A laparoscopy helps if done by a GOOD endoscopist and is better than jigging around with drugs in my experience. Make sure you are absolutely clear on what is being done for you in surgery to avoid any removal of things like fallopian tubes, ovaries. [I had vital things removed without being told, until casually mentioned six months after surgery.] Read up on the condition - E.g. David Redwine and Ray Garry are big names in endo research and have numerous peer reviewed articles online - so you can ask good questions of your surgeon/or get the very best surgeon. It reallllllly matters who does the surgery. I can't emphasise this enough - I have had 8 or more surgeries. Prof Garry was the most meticulous, spending 6 hours removing adhesions and scar tissue for example. These were the most successful. Other surgeons went for the most obvious bits to clean up, leaving behind much of the material which had minimal effect on the disease and its progression due to their clumsiness. Ray Garry has written about the necessity to remove every tiny speck of the disease during laparoscopy for the best outcomes, so IF this surgery is on the cards, ask about how it will be conducted, what will happen if the disease is confirmed etc.

And yes, many of the presenting symptoms of endo are often first examined in other parts of the body fsuch as the gall bladder, bowel [such as IBS] or kidneys - so it does follow that your doctor has asked for other checks. The only way to truly diagnose endo is with laparoscopy so get one done as soon as possible. Don't forget to consider your fertility options, even if you don't want children currently. A good surgeon should be able to act conservatively in laparoscopy, exploring with you all of your options carefully.
posted by honey-barbara at 5:43 AM on November 28, 2009 [1 favorite]

I've had a hemorrhagic cyst and it was no walk in the park, but it resolved fairly quickly (matter of days). It sounds like you present classic endo signs. My initial reaction is to go straight to a lap - there is only so much that ultrasound can show and the only way to truly diagnose is through a lap.

Should they find truly aggressive endo, I have heard of using Lupron to suppress the growth of the endo with a follow up lap to clean it out.

Best of luck!
posted by Leezie at 6:45 AM on November 28, 2009

It definately sounds like endo and possibly other issues (fibroids?). Ultrasound will not show endo, only lap will and they can remove it while they're in there. But note it does come back. Endo can be found beyond the uterus too--back, other nearby organs, bowel, etc.

I had periods similar to you from 9 until 25 when I finally went on the pill. I recently had a son and I can now say the pain was exactly like labor, it was that bad.

I agree with honey-barbara regarding the fertility/surgery route. You might want to consider an infertility specialist to do the surgery.

Good luck and I wish you a pain-free life.
posted by stormpooper at 7:14 AM on November 28, 2009

Similar to johnstein, I had a non-typical gallstone pain presentation. CT scan showed nothing (not uncommon with gallstones apparently), and doctors were convinced I had uterine or ovarian issues because my pain (a stabbing, shocking pain that made me seize up with surprise and crumple to the floor) was so low in my abdomen. But a transvaginal ultrasound showed nothing either. A HIDA scan (test of bile duct function) revealed two 1cm gallstones and that my gall bladder was completely nonfunctioning. It was removed via laparascopy.

Having said that, I'm not convinced just because the pain is now gone that the pain was coming from the stones. At the time I had the pain, I was drinking 2 martinis per night, eating a lot of meat and high-fat foods, and I was about 80 pounds overweight. Shortly after the gall bladder removal I changed some habits and began losing weight. I did twice again have the pain attack, to a much lesser degree, in the months after the gall bladder removal. But nothing since I've lost the weight and changed what I'm consuming.

Obviously YMMV.
posted by ImproviseOrDie at 7:14 AM on November 28, 2009

I have endo. I was told by my doctor that the only definitive way to diagnose it was through surgery (laparoscopy). I signed a form that allowed him to change from exploratory surgery to treatment if he found endo, which he did. The surgery helped tremendously, and what pain I have remaining is much less, more intermittent throughout the month, and treatable with OTC pain meds.

Of course, all surgery carries risk, but laparoscopy is fairly low. My doctor found a cyst on my uretor (which connects the kidney to the bladder and was probably the source of my back pain). He didn't burn that one because of the risk of severing the uretor, which would have been a serious complication. Ask your doctor what she will do if she finds endo, or if she finds something else.

I'm glad I had surgery, and I'm glad my doctor was conservative in the risks that he took. I wish that I'd asked more questions prior to the surgery and that I'd found out a bit about my options. Since there may be multiple things causing you pain, ask your doctor what she will do if you have endo, and what she will do if you don't. Ask her what her risk/benefit calculation is and try to figure out together what you think is worth while and what isn't. Ask her how often she performs these surgeries and what the outcomes are. Is she definitely recommending surgery and why. What does she see as the pros and cons of different treatment options. Check out sites online or books about preparing for surgery and what questions to ask and make yourself a checklist, so you can be sure to remember them all. When your questions are answered, you'll be in a position to be confident that your making the decision based on information and not on a need to end the pain, dear god, anything to end the pain (which was the basis of my decision).

Good luck. I hope it gets better soon.
posted by carmen at 10:54 AM on November 28, 2009

I have endometriosis, too, and had hemorrhagic cysts that were misdiagnosed over the years as "heavy periods" (this, after going to the emergency room twice and filling kidney dishes with gigantic clots of tissue, or bleeding through two maxipads at once).

When I had the worst back and side pain in my life about nine years ago, I went to the emergency room again. I had an ultrasound and a pelvic exam. The doctor touched the area of my right ovary, and I levitated with pain so much that I nearly hit the ceiling. She scheduled my surgery immediately.

I then had a laparoscopy that showed extensive endometriosis in my lower bowel and right ovary (which explained the intense pain and backache on that side). The doc cleaned up as much of the endo that she could find, and removed another ovarian cyst that had ruptured and was causing the pain.

I was up and about in a couple of days, although it was hard to cough or laugh for a few days after the surgery. The worst pain is feeling puffed up after the gas they pump into you to distend your abdomen for the surgery. I have tiny scars, one on the right of my abdomen, one above my bikini line, and one in my navel. They have pretty much faded now.

I then went on Depo-Provera, which ended my periods and most of the pain. I did still get breakthrough back and side pain, though, which I treated at the very first sign with OTC meds, prescription-strength ibuprofen after that (pain at 6-7 on the scale), and Vicodin on the very worst days (8-10). Ask your doc for a small prescription for something like that, so you have it on hand if you're really suffering.

You don't mention whether you're concerned about fertility, or whether you'd mind not having periods. I don't want kids, so it was a no-brainer to take the Depo shot -- and it was pretty grand not to have periods, either. I stopped the Depo 15 months ago because my doc wanted to see how the endo was progressing, and got my period back after six months off the Depo.

I had another lap last year to clear up some scar tissue that was connecting my bowel and uterus ("like a violin string," my doc said), which had been causing a painful twanging sensation in my side. I've been largely pain-free ever since, touch wood.

Good luck to you -- I know what you're going through, and I hope you find relief from the pain and stress. I hope my own experience will help in some way.
posted by vickyverky at 3:30 PM on November 28, 2009

This summer my 25 year atheletic sister had to have her gallbladder removed due to similar symptoms. It took about a year to determine because of her age and health - the doctors though cysts etc.... first. Her pain often corresponded with her period because (we noticed later) she would eat less healthy or greasy things at this point during her cycle. About a month before the surgery she was in nearly constant pain (mostly in her back) that no amount of Tylenol 3 would relieve. She restricted her diet and the pain improved. Extra cheese pizza for dinner had her crying in pain all night. An ultra-sound was not conclusive but she requested the surgery anyway because of her experiences with her diet. The surgery took a couple of hours and now she is pain free! Have you noticed any correlation with your food choices?
posted by saradarlin at 1:16 AM on November 29, 2009

Response by poster: Thank you so much for the answers!
I think I have a pretty good idea of what I need to do and I think this is the best I've felt about all of this in a long while.

I'm planning to research the lap surgery a bit more, schedule a talk with my doctor and eat better just because. The pain hasn't been any worse with my eating worse or better when I eat better but I need to get healthy either way.

More than likely we'll head in for the surgery early in the next year. It's a better option for me and I would much rather get this settled soon. I do plan to have children and I'm definitely going to write down the suggestions here.

I really appreciate all of you taking time to help me!
posted by grablife365 at 1:17 PM on November 29, 2009

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