Endo vs. ovarian cysts questions to ask doctor
March 18, 2014 10:21 AM   Subscribe

Doctor suspects I either have endometriosis or ovarian cyst issues. She won't do a differential dx because the treatment is the same. I am seeing her tomorrow afternoon. Just want today be able to ask good questions. I

I have pain. Lots of it on my period all around my left ovary. I'm to the point I really just want them to take the damn thing out. My right one is just fine and has zero pain. I have pain that worsens using tampons (I think the pressure has something today do with it). In general I experience pain during sex no matter what (size, speed and position don't seem to matter). The doctor thinks it's either cysts or endo .I ended up in the er with free floating blood in my abdomen but they couldn't verify where it came from. She doesn't want too do a differential dx because she states the treatment is the same. Birth control has helped. I missed it due to moving craziness and the pain is back to pretreatment levels (have started it again). I'm wondering what some good questions to ask would be and if I should investigate further.
Some if this pain she attributes to my PTSD which is fine. Therapy hasnt changed any of these issues. I really want today work towards resolving (I realize there is no cure) and having a strategy today deal with the mind numbing pain.
posted by AlexiaSky to Health & Fitness (17 answers total) 2 users marked this as a favorite
If compliance with taking the birth control pill is a problem for you, I would strongly recommend asking about having an IUD inserted. I do not have personal experience with it but I have heard it can be life changing for endometriosis.
posted by telegraph at 10:25 AM on March 18, 2014

Doctor suspects I either have endometriosis or ovarian cyst issues. She won't do a differential dx because the treatment is the same.

I would ask her to explain this. My understanding is that ovarian cysts can burst, which is apparently excruciating and can be dangerous. Some cysts do need to be removed, and even if you have one that doesn't need to come out right away, it's still valuable to know exactly what is going on in there. In your shoes, I would want my doctor to do an ultrasound to see if cysts were in fact present before shaping her treatment plan. If you get a satisfactory answer, fine (but maybe seek out a second opinion). If not, find a new OB/GYN. (If someone here knows more about this than me, I'd love to be corrected!)

I would also ask about your pain management options.

Good luck. I hope you feel better soon!
posted by schroedingersgirl at 10:30 AM on March 18, 2014 [4 favorites]

I had an ovarian cyst (viewable via sonogram) and my doctor put it up to me to decide if/when it bothered me enough to get it removed (via laproscopy). Your doctor should give you a similar option -- did she? You might want to try another doctor, if she didn't.

(Note, she couldn't tell what the cyst was, exactly, until she went in there. And she found endometriosis, and was able to get rid of a bunch of it while she was there. So even if you're not sure if it's cysts or endo, this procedure should be an option for you.)
posted by chowflap at 10:38 AM on March 18, 2014 [4 favorites]

Response by poster: I had an ultrasound over a year ago. I don't think she wants to do another. I had small cysts but nothing they were worried about (as people get small cysts all the time and never know it) I know cysts change. I'll ask and see if they think it would be a good idea.
I do wonder if I had a cyst that burst if I damaged the ovary in some kind of way and that scar tissue or something is causing the pain. My grandmother had that issue and eventually had a hysterectomy. The doctor commented how damaged her ovaries were. She states it is the best health decision she made in her life.
posted by AlexiaSky at 10:42 AM on March 18, 2014

Same as chowflap here, ovarian cyst with endo. Treated with laproscopic surgery and following surgery, near continuous hormonal birth control (usually 3-4 periods a year). I did this for a couple of years then went off the bc to try and get pregnant, and did not have a reoccurence of pain during the 10 months between discontinuing and getting pregnant. So it seemed to be very effective for me.

They were also able to tell me the condition of the ovaries (both functioning) and fallopian tubes (one working, one impassable from scar tissue) which was useful information for me in thinking about getting pregnant.

And it's anecdotal, but my pain (specifically the knife like cyst pain) was relatively manageable (really bad for one day per period) before I got a copper IUD. With the IUD I had frequent, long, heavy periods and as far as my endo pain it was like throwing gasoline on a fire. It got really bad. I believe initial increased frequency and heaviness of periods is common with the non-hormonal copper IUD, which is just a bad thing with endo. This is different I believe with hormonal IUD's, but you might want to do a bit of research if you're thinking about this option.

(on preview) Is laproscopy one of the treatments she's offering? or just bc?
posted by pennypiper at 10:53 AM on March 18, 2014

You have more backstory on your own history than I do, obviously. But if this was me, I would want to know: if there are no cysts, wouldn't a hysterectomy that leaves the ovaries intact solve the problem? I'd rather keep my ovaries if at all possible, but if they are more of a problem than the endo, due to the cysts, that wouldn't solve the issue.

(a good friend had stage IV endo. she still has her ovaries but after her hyst, she is pain free and very happy).
posted by peep at 10:59 AM on March 18, 2014

She states it is the best health decision she made in her life.

For a data point, my hysterectomy was the best health decision I made in MY life!

You don't say how old you are, I had mine at 41, due to a family history of ovarian cancer. I don't miss anything about my period and I especially don't envy my friends their menopause. I started HRT immediately, but that's another decision for another day.

What I discovered was that nearly ALL of my doctors were too conservative about hysterectomy, even though I had told them I didn't want children, and that I was afraid of our family history. On my first visit with my new GYN, she asked me, "when do you want to schedule it?"

I had laproscopic surgery and I was back at work within two weeks. (a bit soon, but I was there.)

Get a second opinion if you are honest about having one of your ovaries removed. Ask your second doctor is that is a viable option for you in this situation. Be aggressive and advocate for yourself.

I wish I had done my hysterectomy five years earlier.
posted by Ruthless Bunny at 11:17 AM on March 18, 2014

I had similar symptoms, though the pain wasn't consistently worse on one side than the other, and my diagnosis was recurring ovarian cysts and endo. When a cyst burst, it was clear; for example when it happened while I was driving I had to pull over because I was sobbing and hyperventilating so hard.

Due to my supposedly high risk of breast cancer, hormonal intervention wasn't an option, so we just did surgery. I had my ovaries out at age 42 or so. Also the best decision of my life. We left the uterus because the problem was almost entirely the ovaries cranking out estrogen, feeding the endo, and growing increasingly bigger and more painful cysts. It was an outpatient procedure and I walked hunched over for a few days. And then … I had a life! I could schedule anything for any time! I could do whatever I wanted with my partner! I also lost a lot of my depression.

If I were you, I'd push harder for another ultrasound (I'm assuming we're talking transvaginal, which is what showed my cysts). If there's something hinky with the left ovary you should try to find out just how hinky it is. If it shows another cyst, especially if it's big or complex, there's your insurance-approved reason for surgery, if that's what you decide to do.
posted by ceiba at 11:39 AM on March 18, 2014 [1 favorite]

Response by poster: When I ended up in the er (with the blood in my abdomen) I think it was pretty damn clear it was a cyst but they say no it wasnt clear. I was hurting some and then I was on the floor thinking that maybe the cold tile would help the crazy burning and totally out of it because I tend to trance out in major pain. It may be both endo and cysts or it may just be one or the other.. Also complicated the dx as I was so out of it the first er I went to refused to do any treatment because they decided I was drug seeking and not in enough pain. So it took a day or so to actually get the ultrasound and the ct which showed the blood. The ultrasounds after showed no new cysts besides the tiny ones mentioned before.

I do want to have a child
I'm 28. If I didn't I'd just have a full hysterectomy and be done. Because this is not tolerable and of course I'm not going to get any medicine that will actually treat the pain for when I need it. And otc meds don't touch the pain. I'm not sure of the risks or possibility of a partial hysterectomy. But I'm seriously considering looking into it.

I'm looking for statements are questions I could ask, like a script. I think the stories are helpful but I want to be able to spend 15 minutes with my doctor most effectively so she knows my wishes (which right now is make the pain stop I don't care how. Which isn't all that effective at moving the conversation foward).
posted by AlexiaSky at 12:04 PM on March 18, 2014

Best answer: I would very simply go into your doctors office and say:

I have Acute/Chronic abdomonal pain. On a scale of 1 to 10, it's an 8. It's more intense during my period, but I have it all the time. It's localized to my left side. I always have pain with sex no matter what. The pain is so bad these days that if removing my left ovary is an option, and if it would stop the pain, I would want to do that.

OTC pain relievers do not work. I'm not sure I want pain relievers because pain indicates that something is wrong, and if something is wrong I want to fix it, not mask the symptoms.

What other diagnostic testing can we do to get to the bottom of this? Trans-vaginal ultra-sound? Exploratory laproscopic surgery? I am at my wits end here. This is compromising my quality of life to a significant degree.

Write it all down. It's easy to get flustered, especially when you're in pain and frustrted.

If your doctor doesn't want to act, thank her and get a different doctor.

You shouldn't have to live like this.
posted by Ruthless Bunny at 12:47 PM on March 18, 2014 [8 favorites]

I have endo and ovarian cysts, but little pain. The pain I do have seems to stem from a major adhesion (from old endo) which grew between my rectum and left ovary. I only learned this because of the laparoscopy I had, which was of little use otherwise. Just more info for you.
posted by Riverine at 12:52 PM on March 18, 2014

Yes, write down questions/statements in advance, and don't take no for an answer. It sounds like you're in a lot of misery, and you don't have to feel that way! It's not like they've tried everything and you'll have to suck it up -- there's a lot of things your doctor could be trying. Persist! Good luck.
posted by chowflap at 1:42 PM on March 18, 2014

I had endometriosis from my first period, at 12. I eventually had surgery for it back in 2005 and it was so worth it. It still took me a long time (about 3 years) to get pregnant, but the pain was gone. I still have painful cramps during ovulation and menstruation, but they are a lot better than before. And my endo was in the left ovary as well. Again, I still have some specific pain there, but the surgery really helped.

And I agree with Ruthless Bunny. Your doctor should tell you about the various options, including surgery.
posted by miss tea at 1:44 PM on March 18, 2014 [1 favorite]

Go to the doctor with the script and if surgery isn't an option, then go see another doctor.

I had similar pain as you mention for YEARS and then my regular gyn was out for my annual, I saw someone else who looked over my records and immediately suggested laproscopic surgery.

Surgery completely ended the pain. Also, during the biopsy, they found that I had cancer. I AM NOT SAYING YOU HAVE CANCER.

So....as you can see from all these stories, be firm with this script.

There is no reason to suffer.
posted by kinetic at 2:33 PM on March 18, 2014 [3 favorites]

I think a big problem here is that your doctor isn't listening to you and is ignoring your pain. Honestly, that's not at all acceptable. Any doctor who would ignore their patient's excruciatingly intense pain and attribute it to PTSD without ruling out a physical cause first needs to be jettisoned. If tomorrow's visit doesn't go the way you want, definitely get a new gyno.

Things to rule out:

Ovarian torsion. Even though it's not likely, since it would (hopefully) have been noticed on follow up scans, torsion can cause the symptoms you described from your ER visit (unilateral pain in the affected ovary, along with the free fluid (blood) in your abdomen). It's more likely that it was a ruptured cyst, which can cause the fluid and pain, but better safe than sorry.

PCOS. I don't know if your doctor offered PCOS (poly-cystic ovary syndrome) as a possible diagnosis, or whether she thinks it's just random cysts, but you might ask about it. PCOS cysts are inside the ovary, so it's less likely to be what you have from what you described.

Ask about the different kinds of tests she can run. She should offer to do the following tests:

- ultrasound, external and/or transvaginal (to locate cysts)
- pregnancy test (to see if you have a cyst inside your ovary, in the corpus luteum)
- blood test (to detect ovarian cancer or fibroids)
- laparascopy (to visually inspect your ovaries and reproductive system for endo and cysts)

Just wanted to add that the CA 125 blood test can also catch other things, like endo and PIV, so it's a good idea to do that one no matter what.

Ruthless Bunny's script is perfect. You might also consider taking a friend or family member with you who can advocate for you if you're more of a non-confrontational person. There's really no reason for not doing all the available tests and making sure your pain is minimized or non-existent. You deserve it.
posted by i feel possessed at 3:08 PM on March 18, 2014 [2 favorites]

Ruthless Bunny's script is perfect, and seconding i feel possessed's advice, take someone with you to back you up, or at least tell you at the end of the appt, "you need to dump her". And I agree your doc does not seem to be taking your complaint seriously enough.
posted by pennypiper at 4:30 PM on March 18, 2014 [2 favorites]

I have to disagree with a previous poster: CA-125 is NOT a good test to do 'just because' and, if you ask, do not be surprised if it is refused. It's not a useful diagnostic test because it is not very specific. Its main utility in current clinical practice is to monitor progress / response to treatment of ovarian cancer. It will not help diagnose a cause of your pelvic pain. That said:

There's a hierarchy of management options for endometriosis, and hormonal birth control is at the bottom. It sounds like it has worked for you in the past, so that may be Step 1 again rather than jumping to invasive surgical options right off the bat. There are methods other than the pill for long-acting reversible contraception (Mirena IUD, implant), which may be better for you if you have had trouble with the pill. Mirenas in particular have had good results for women with endometriosis. It's not unreasonable for this to be tried before leaping to surgery.

Managing pain is another issue, and your doctor should be able to work out with you a pain management plan combining prescription and OTC medications to best manage pain. There are also gynaecologists who specialise in pelvic pain management, and she might be able to direct you to such a person or adopt some of those strategies. I understand that you see pain as a signal, and this is true, but in chronic pain the neural pathways around pain signalling can become hyperactive and continuous, if that makes sense. Of course, this is a diagnosis to come to after acute pathology is managed, but it's also worth bringing up early to see if your doctor can manage it.

Best of luck, I know this is an awful condition to deal with.
posted by chiquitita at 5:51 PM on March 18, 2014 [1 favorite]

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