Endometriosis Diagnosis
June 13, 2011 11:30 AM   Subscribe

Just diagnosed with endometriosis. Seeking information, experiences, and advice (about one aspect in particular, but I'll take any you have to give.)

Long story short, I had an ultrasound to check for fibroids last week and instead they found what appears to be a 5cm endometrioma (i.e., a "chocolate cyst" - surprisingly not as delicious as it sounds!) on my left ovary.

I subsequently visited a gynecologist, who told me that the cyst is just barely at the point where she'd like to remove it via laparascopy. But just in case it's not actually an endometrioma (surgery is the only way to definitively determine the nature of the cyst and the presence and severity of endometriosis), we made the following tentative plan: insert a Mirena IUD after my next period ends, do another ultrasound in a few months, and see if the cyst has gotten any smaller. If not, I'll get surgery.

I was feeling pretty good about this plan, but I had a conversation yesterday with a friend's mom which really freaked me out. She has endometriosis and had surgery for it around 27 years ago. She said, quite vehemently, that once there is good reason to suspect endometriosis, it would be foolish to make any decisions at all about treatment before obtaining an immediate laparoscopy to determine its status.

My friend's mom is not a doctor and did not even know what an IUD was, and if a few months of delaying surgery might actually have huge repercussions for my fertility I am sure my doctor would not have recommended it. However, it does make sense that I should have all the available information before making any decisions, and honestly, I have no trouble being skeptical of a doctor's decision-making.*

I would love to hear input from those who also suffer from endometriosis - how did they find it? What did you do about it? How are you doing now? In addition, do you think this Mirena business is a good plan, or should I push for surgery? I am 27 and not wanting babies for at least five years. I'm also female, btw.

*Optional Supplementary Information: The aforementioned wariness is based on my own experiences and those of my loved ones. I have suffered from horrendously painful, debilitating periods approximately every 23 days since age 12. Whenever I've shared this with a doctor/medical professional - and I've shared it with at least a dozen over the years - they've been utterly dismissive. The few times I summoned up the courage to explicitly ask if there was anything to be done, they shrugged and recommended acupuncture. I didn't even know that an ultrasound was an option until three weeks ago when I visited a second doctor in as many months because I was concerned about my recent unusually heavy periods. She (prior to the gynecologist, obviously) recommended the Mirena, and gave me the option of an ultrasound to check for fibroids, if I happened to be "the type of person who likes to know what's going on."

I've found that these kinds of experiences are pretty common among women with gynecological disorders. While I do, of course, acknowledge the superior knowledge and experience of medical professionals, a lifetime of this kind of treatment creates an almost adversarial relationship between doctor and patient. This is all to say that it's not out of the realm of possibility to me that by taking her sweet time to operate, my gyno is not taking me seriously and may be screwing my uterus, just like nearly every other doctor I've seen.
posted by anonymous to Health & Fitness (8 answers total) 5 users marked this as a favorite
Surgery, even minor surgery, can be a big deal. I think it's pretty reasonable to wait a couple months before undertaking it. Your doctor hasn't entirely dismissed the idea of surgery; it sounds like she's hoping a less invasive method might help and using that to help determine exactly the nature of what she saw on the ultrasound. It's not really a matter of making a decision without all the information -- all the information can't be obtained without basically making a decision in advance. Especially considering that she's said it was barely big enough to operate on, it seems waiting a couple months is worth it to avoid surgery if you don't need it.

Make sure you really do make it only a couple months, though. Make your follow-up appointment when you get the IUD inserted, so you can make sure you continue to get the care you need.
posted by duien at 12:36 PM on June 13, 2011

As long as the cyst isn't too large, and hasn't twisted anything, I think trying out birth control (Mirena) is a good way to go, in the beginning. If it is endo, some women do see it reduced by hormonal birth control; it "deflates" the cysts so to speak. (IANAD, can you tell? :) )

I am a woman with endo, though. Mine was strongly suspected by my GP when I was growing up, anemic, practically hemorrhaging for 10 days every 20-25 days (my periods were irregular, on top of it all) and unable to move for the first one or two days of my periods. I was a minor until I left the house; while I was a minor, my parents refused the recommended hormonal BC and refused any further diagnostic possibilities – they "knew I exaggerated". (Whatever. I was making up the low iron counts, blood stains through super-maxi pads after an hour, and the passing out from pain even after taking Ibuprofen? Ugh.) So, I actually had a good doc, it was my family who played the dismissive part.

Age 21, I'd gone to the other side of the planet from my family, in Finland :) and one evening I had terrible, debilitating cramps in my right side, outside of my period. I thought of appendicitis, got myself to an emergency room, they did an ultrasound, and found a burst cyst.

They did laparoscopy on me immediately. It was a chocolate cyst, endometriotic, that had twisted around my fallopian tubes before bursting. It had been twisted for long enough that apparently, my right ovary looked like it be "dead", but they didn't remove it just in case it still "works". (This was explained to me in broken English, and my medical file for it is in Finnish, plus as I said IANAD, so please excuse the awkward description.) That was how my endo was definitively diagnosed.

I was put on hormonal BC and responded wonderfully. Oh my goodness it is unbelievably great. Periods are regular (pill, y'know), they only last 4 days (woohooo!!!), I have kinda bad cramps for a couple days but I can actually move! and do things! and breathe! and not pass out! and I haven't had any problematic cysts ever since going on it.

There are women who don't respond the same way, which is why your doc recommended another ultrasound in a few months. That sounds pretty reasonable and responsible to me. In the mean time, just pay attention to your body, and if you get any out-of-the-ordinary pains, have them checked out.
posted by fraula at 12:49 PM on June 13, 2011

I've had endometriosis, and so much of what you have written rings true.

Like you, I'd always had short cycles with heavy, painful periods, and even 'breakthrough' bleeding mid-cycle. Earlier doctors, just as you experienced, dismissed my concerns. They eventually put me on birth control pills to "regulate my cycles", which just contributed to my depression and made me gain weight. When we decided to start our family, my symptoms came back, but I was able to get pregnant. My children were breech, both c-sections, but I was lucky--no one had ever told me that my problems could be caused by endometriosis, and that I risked infertility by not having it treated.

When the kids were weaned, and the endo started up again, my ob/gyn--the man who had delivered my kids!--told me I was just going to have to learn to live with the 'inconvenience each month'. I found another doctor.

She said, quite vehemently, that once there is good reason to suspect endometriosis, it would be foolish to make any decisions at all about treatment before obtaining an immediate laparoscopy to determine its status.


Laparoscopy is the final definitive step in diagnosing endometriosis, but there are several steps to take, and often the first step, maddening as it is, is to wait and see what happens. There's actual valid medical reasons for this; if the cyst isn't endometriosis, it's more likely to be benign than anything worrisome (women often have ovarian cysts and don't even know; they happen more often than we think); and cysts often resolve themselves within a couple months, thus taking care of the problem without invasive surgery.

Next, there's hormonal treatment. In my case, I took hormonal supplements to try to shrink my worst cyst (which was, I think, 4cm). Nine years ago, IUDs were not available, and the stuff I took utterly sucked: made me irritable, caused weight gain and then didn't even shrink the cyst. Your doctor's IUD suggestion makes perfect sense. We know there is some connection to estrogen and lowering your estrogen levels may even take care of this cyst. I also had a transvaginal ultrasound somewhere along the way, don't remember when (Whoopie. What fun).

If those don't work, just as you and your doctor have discussed, surgery may be necessary. I had a hysteroscopy. The severe pain I had been feeling was because, in addition to the cyst, my fallopian turbes were literally fused and one of my ovaries was twisted and fused too, and it was just really bad*.

Anyway, my new (wonderful, responsive) ob/gyn took care of as much as he could. I was very resistant, before surgery, to consent to remove my ovary unless it was absolutely necessary, so there was only so much he could do, but while I was in recovery he told my husband that I was almost certainly going to need a hysterectomy. He was right. I had to have abdominal surgery to remove, basically, everything, a few months later.

If I could give you any advice about my experience with endometriosis, it would be that the most valuable asset you can have is a doctor who listens to you, takes your concerns seriously, and is willing to work with you!

So I would stick with your doc and do what she recommends. Each case is different. Your neighbor is not familiar with your own personal case, only you and your doctor are.

I'm sorry you have to go through all this. Endo sucks. Mefi-mail me any time if you have questions or just want to vent about it.

*I was Stage 3, , so please do not panic! My case was severe. That's why it's good you are on top of this!
posted by misha at 2:06 PM on June 13, 2011

Hey there! I also have endometriosis. When I was diagnosed (age 33) I was being treated for infertility, so I had a lot of doctors look up my twat and talk to me about this stuff, and I did a lot of research on endometriosis and its treatment.

1) The mechanism that causes endometriosis is not clear, and the mechanism by which it causes infertility is not clear. There are a couple of good theories but nothing for sure.

2) There is no way to definitively diagnose endometriosis without doing surgery. Your symptoms and your US images are strong indicators that you may have endometriosis, but it's not for sure until they poke a hole in you and look inside. When I had my C-section, my docs looked inside and said 'aaah, endometriosis', but until then, they were just 'pretty sure' I had endometriosis.

3) There is no cure for endometriosis. There is both surgical treatment and hormonal treatment. Birth control pills are very good for controlling the painful symptoms and for possibly keeping further spread of endometrial cysts in check. Surgery is not a good way to treat endometriosis unless the cysts are causing specific physical MECHANICAL problems, as in the cases described above. It's not a good treatment because follow-up studies show that you can take out endometriomas and the problem will recur and be at the same level within three years. The same is true for hormone treatment - you can take meds, they will shrink the cysts temporarily, and then you stop taking the meds, and they come back.

THERE IS NO CONSENSUS as to whether treatment will help with fertility. Data shows no benefit to surgical or hormonal treatment to fertility. The thought with surgical treatment is that removing endometriomas close to the ovaries may damage/remove enough ovarian tissue that any benefit is outweighed.

4) Endometriosis is not usually life threatening, although there are some pretty awesome end-of-bell-curve worst case scenarios involving collapsing lungs and brain stuff. Usually it's just a quality of life issue (and fertility issue).

5) There are multiple kinds of cysts and just because there is a cyst on your ultrasound does not mean you have endometriosis. It could be an unusually large leftover luteal cyst. It could be a dermoid cyst with a tooth in it or some kind of crazy shit like that.

Here is my advice to you:

Find a gynecologist who specializes in endometriosis and have a consultation. Ask for copies of articles on treatment. Call ahead the day before the appointment and ask them to have these ready for you to take home with you and review at your convenience. This gyno will be able to discuss treatment options with you and will take your symptoms (i.e. debilitating pain, yay) seriously. If they won't, get a new doctor. I had very painful periods and I insisted on having a supply of vicodin around for them. That did the trick. You have pain relief options.

Do not forget about this. You need to continue monitoring this cyst and see what happens to it. It might go away. It might get bigger. It might stay the same. I have a large cyst by my left ovary that's been hanging out there for three years and was still there last time I checked.

Talk about birth control pills and consider trying several different brands with different hormone combinations before you decide on surgery. I had to try several before I hit the right one, but once I did, I could talk the pill continuously for two months, then have a light, shorter, less painful period, and it was awesome. I've also been told that being on the pill for so long probably kept my endometriosis under control.

And ask what the likelihood is that this is ovarian cancer. I hope your doctor ordered a blood test for CA 125 which is an indicator for ovarian cancer. A *slightly* elevated CA125 is an indicator for endometriosis.

I am not a doctor and this is not medical advice.

On a personal note, you may want to re-think your plans for children now that you have this diagnosis. I started trying to conceive shortly before I turned thirty. Four years later I was paying for IVF.

Good luck!
posted by bq at 3:27 PM on June 13, 2011 [2 favorites]

I don't think a few months one way or another will make you or break you. I wouldn't let any old OB/GYN do the surgery because there is a very real risk of additional scarring from the surgery itself, and of the surgery not working well.

I wanted to minimize that by using someone who did these surgeries as his main occupation. I spent about six months finding an excellent surgeon who specializes in minimally invasive surgery for endometriosis and similar conditions. Here is his page so you can see what I'm talking about--he's not a generalist, he specializes, and that's what I wanted.

It was the best thing I ever did. No more pain. The ultrasound didn't show the numerous other problems that resulted from the endometriosis, including an almost completely obstructed bowel, an almost completely obstructed ureter, scarring that attached multiple ligaments to my uterus...

I conceived (shockingly) easily about 7 months later after being told by multiple doctors that I would have trouble getting pregnant.

My advice would be to find an amazing surgeon who specializes in endometriosis, even if it takes a while, and go for it. My quality of life is much improved. There was pain and discomfort that I didn't even associate with the endometriosis until it was gone. It might come back, but realistically--I don't give a shit. Totally worth it.
posted by the young rope-rider at 7:45 PM on June 13, 2011 [1 favorite]

I forgot to mention--hormonal birth control never helped my symptoms, possibly because so many of them were caused by adhesions (aka scar tissue) and as far as I know, adhesions are not affected by hormones. It's hard to know whether that's the case for you. There's a lot that they can't know until they do surgery, which sucks.
posted by the young rope-rider at 9:47 PM on June 13, 2011

IANAD, but I work for a gynaecologist who treats endometriosis, and I hope it might help you to know that what your doctor has suggested seems to be a pretty common way to go.

(And on cysts... I don't have endo, but I think this is still related. Last year I had a 9cm (!!!) ovarian cyst found on ultrasound. The first specialist I saw said it would not go away and surgery would be necessary. I got a second opinion and was advised to stick out the pain and have another ultrasound in 4 weeks. In 2 weeks (I'm impatient) it had halved in size, and in 6 it was gone. Cysts seem to be hard to correctly identify on ultrasound.)
posted by equivocator at 10:02 PM on June 13, 2011

I just had a laparoscopy two months ago for suspected endometriosis. I spent the last year or so going to a number of endo-specialising gynaecologists and, if it's any reassurance, both of the doctors I trusted the most (plus my GP who referred me) seemed to believe that hormonal treatment first was well in line with current recommendations.

Most of my pain came from adhesions, it seems, so in the end, a laparoscopy was a good choice for me (and may be for you too), but I was glad I tried a few other options before getting sliced open.

Pragmatically, once I decided to go for the laparoscopy, it took me a few months to make arrangements (specifically, getting time off work - for me, recovery took a good 2 weeks before I was up to taking the bus and it was a month before I was feeling back to normal). Possibly, it would make you feel better if you started planning for the surgery now while you tried Mirena?

(And finally, the laparoscopy wasn't pleasant and hurt much more than I expected, but I am really, really glad I got it done. I feel much better now, and it was reassuring to finally have a diagnosis. If you do end up having to go the surgical route, it definitely is not the end of the world - PM if you feel like chatting about it)
posted by brambory at 1:15 AM on June 14, 2011

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