I know you're not my doc. Talk to me about endometriosis.
January 24, 2014 7:13 AM   Subscribe

I visited my GP for a myriad of symptoms that she suspects is endometriosis. I'm headed to my Lady Doc on Monday, but wasn't terribly concerned. I thought it would be similar to the LEEP I had last year, as in "Zap zap, you're done." I wasn't even bothered—that is until I emailed a friend about her experience with endo. Help me parse what my friend is saying vs. what my GP said I should do? I'm feeling some pressure to move quickly.

Symptoms here. (All except the second one, surprisingly.)

Two previous questions I found relevant: 1 & 2.

This is a bit weird, but I'm going to copy and paste exactly what my friend wrote. See below:

I am SOOOOO glad that you contacted me about this. There are really only like 5 doctors in the US that know how to deal with endometriosis properly, my surgeon is one of them and if you need contacts in NYC I will get them to you right away.

It's a really tricky disease and unfortunately there is no way to know if you have it/how bad it is until they do surgery. But please please don't just get surgery with just any gyn because there is an 80% recurrence rate within 6 months if you don't see an expert, and surgery has its own set of complications that you want to avoid. Best to have one really good surgery than like 12 bad ones!

My surgeon here in Atlanta is like the best person I've ever met, so if you want to come "home" to deal with this, you can't go wrong. His name is Dr. Sinervo and his practice is called the Center for Endometriosis Care. They offer a free records review, and you don't need any prior diagnosis (I had none).

The most important thing is your detailed personal history, because they do this all day long every day they are super good at recognizing the subtle symptoms--I had none even though
I had the most advanced stage disease and had to lose 3" of my colon, my appendix and some parts of my utero-sacral ligaments.

I don't say that to scare you, but I kind of do because it's so important to understand how serious the disease is. Not to mention if you ever want a family, you need to take care of it NOW. I may have waited too late and that has been the saddest thing to ever happen to me.

I belong to a gigantic network of women with endo all of the world so I have a lot of information about the disease. A great place to start learning is the CEC website, here: http://centerforendo.com/endoq&a.htm

Do NOT listen to your gyn, I am dead serious. They learn 1920's information in med school and will completely ruin your life if you do what they tell you. Most importantly, DO NOT TAKE LUPRON. It is the most evil drug ever, my surgeon wants to see it completely off the market in his lifetime. Birth control pills don't work either, they may control the pain but they basically allow the disease to keep eating away at your insides.

Ok, sorry to be all up on my soapbox about it, but I'll need a lifetime of therapy to get over how angry I am at all of the doctors who screwed me over before I finally found a good one. Give me a call if you want to chat, I don't know if I addressed any of your concerns and I am happy to help a fellow lady! I'm sorry that you're dealing with this, I have been through hell on this journey and I absolutely understand how isolating and awful it can feel.

So, yeah. I need some help figuring out what to do, now that I've read that.

I have an appointment with my usual OBGYN on Monday, but it sounds like she won't be able to do anything bit say, "Yep, sounds like it to me. Let's schedule you a laparoscopy." Which is exactly what my friend says NOT to do. Or put me on birth control, which only seems to treat the symptoms, and on which I do terribly. I also really think my OBGYN will put me on Lupron, which again, sounds miserable—both from my friend, and a few ladies in the above linked AskMes.

Should I skip the OBGYN and head straight to the endo specialists my friend recommended? They do a free records review, so it can't hurt. But they're in Atlanta and I'm in New York, and if I'm a farther along "stage," it might be an extended recovery time—away from home*.

Can you guys help me figure out next steps are? Share some of your experiences? Cut through some of the noise?

Thank you!

*I'm aware I might find a specialist in NYC that is just as great as the center in ATL that my friend recommends.
posted by ulfberht to Health & Fitness (15 answers total) 6 users marked this as a favorite
ignoring the actual medical issue, your friend sounds like a quack. Insert any number of other medical issues and re-read the email, and it has red flags all over the place. (ie "everyone else is wrong" "this one magical person can only do it", etc)
posted by k5.user at 7:36 AM on January 24, 2014 [7 favorites]

I've been where you are with a completely different medical issue, but in my case the general group of physicians (including specialists) had ten years to treat my condition with marginal success. My move to a completely different physician - in a specialty considered "quacky" by many, especially other traditionally-trained physicians - has greatly improved my health and quality of life.

One thing to explore is whether your medical insurance covers second opinions. If they do, you have nothing to lose by getting both opinions. In my case, it means I have to pay a bit more out of my own pocket to see my doctor of choice, which I am able and willing to do because of the difference it's made to my health and quality of life.

This is important enough to take a little time to completely explore your resources before committing to a treatment plan. Good luck!
posted by summerstorm at 7:47 AM on January 24, 2014

I do not have endometriosis, but I have family members who do and I have also dealt with other uterus-related issues (fibroids). Everyone I know who has taken Lupron has absolutely hated it, so I definitely agree with your friend about that. However, many of the symptoms you linked to can happen with other conditions - I had all of them when I had fibroids. Even though your GP suspects it's endo, it could be other things, so definitely follow up with specialists.

I think you should go to your regular gynecologist and tell her all of your symptoms and how long you've had them, discuss your concerns with her, and ask her what your options are. If she does not do an ultrasound, ask her to do one so she can check for fibroids, which are pretty common and fairly easy to diagnose or eliminate as the potential cause.

Then go get a second opinion. (For general gyn care and specifically fibroids, I highly, highly recommend Dr. Charles Ascher-Walsh at Mount Sinai in NYC. Everyone in that department has been phenomenal.) Also, go ahead and get the local NYC recommendation from your friend, who does indeed sound a little nutty, but there's no reason to hop on a plane or get surgery or even make a decision about options just yet. Get an official diagnosis and weigh all your options before deciding on a course of treatment.
posted by bedhead at 7:50 AM on January 24, 2014 [2 favorites]

My ex had that and it was really bad. Like miss several days of work every month bad. Pills didn't help.

This is icky: we had an nonviable fetus and went to an abortion clinic. She told them about the endo and they said they could do something about that while they were in there. I don't remember what they did but it changed her life. She was home the same day.
posted by Mr. Yuck at 8:01 AM on January 24, 2014

When I read your friend's email, it doesn't sound quacky to me at all - it sounds like someone who spent a lot of time and money trying to get an issue resolved, but kept getting bad professional advice, until she finally found someone who could get the issue resolved for her. I'm not sure if your friend was in a lot of pain, or was wanting to have kids, or what other motivation it may have been that lead her on her journey to try to get her issue resolved, but regardless, it sounds like something that she didn't want to linger and affect other aspects of her life anymore, so in that context, her advice isn't bad.

She doesn't want you to have the same long, frustrating, expensive journey that she did. She's basically telling you to skip steps 3-9 (step 1 being your visit to the GP, step 2 being your visit to your regular gyno) and go straight to an expert who will get you fixed up and on your way.

That being said (and depending on what your gyno says), I don't think you are in an "omg, you have to schedule an appointment like yesterday!!!" situation.

Go to your regular gyno and have her do some testing. You could also contact a couple of those surgeons before your gyno appt, and ask them what tests they would want to see if you got referred to their office. That way you wouldn't have to do/wait for tests again if you go that route. If it turns out that surgery is necessary, I think your friend's advice to go straight to an expert has merit.
posted by vignettist at 8:12 AM on January 24, 2014 [6 favorites]

I've ranted on here how I went undiagnosed for endo and it TOTALLY PISSED ME OFF.

I also totally rant about how pharmaceuticals often eff you up more than help.


I was in NYC and got a laporoscopy at Beth Israel. Totally did the trick.

Doctors that should know better do miss it all the time. Drugs and birth control pills don't work and have more side effects than cure to them.

Laser surgery worked fine for me. Sounds like what another poster above's gf had done.

I also was told I would have infertility issues and that turned out not true.

Memail me if you want office/DR recomendations for NYC.

I'm sure the doctor in Atlanta is awesome (I especially love that they are against Lupron) but I doubt you need to travel that far from home for treatment.

I remember being so scared I would have endo forever, etc, even after surgery.... And then a few years post-surgery my new (female) gyn was like, "If you no longer have symptoms, why are you worrying about it?" Great advice!!

For a few years after the surgery I had follow-up ultrasounds, and after that, I stopped worrying upon the advice of my excellent new doc.

I'm sure you'll be fine. And endo doesn't "eat" your insides, it attaches to places it shouldn't and grows. Zap zap, bye bye. Most of the time, that's pretty much it, at least, it was for me.

Hope that helps.
posted by jbenben at 8:39 AM on January 24, 2014 [4 favorites]

Endo is some nasty business.
Everyone's case is different, depending on the growth points of the endometrial tissue, reaction to hormones and general health.
So I agree with two of the main points in your friends email. Essentially:
(1) You want a doctor who will listen to your actual symptoms and work with you to design a treatment program that works for you. Those doctors can be tough to find, so get recs and check them out... You definitely don't want a doctor that will cookie cutter this with "all x should be treated with y."
(2) Do NOT get surgery (even an exploratory laparoscopy) from a doctor that isn't highly experienced and with good results in endo surgeries. A bad surgery can spread the tissue to other points, which can result in worse/additional symptoms and be a devil to eventually root it all out.

Finally, don't necessarily write off medical treatment for it. The results of hormonal therapies are way deep in ymmv territory, and you're typically going to hear more about a fewer number of bad results (a squeaky wheel effect). I do wonderfully on bcp (running the pills back to back and never taking the inactive pills) after a course of lupron. Just be totally ready to assert yourself with your doctor if you decide to try hormonal therapy and it's not working for you.
posted by susiswimmer at 9:22 AM on January 24, 2014 [1 favorite]

Write a neat, organized list of your symptoms and fears and take it with you Monday.

And calm down. Nothing you mention sounds like an emergency.

I, too, had a period of about six months with all the symptoms except sexy-time pain and infertility (which is expected, not a symptom, after a tubal ligation.) These are all vague symptom that could be anything from migraine related to stress. In my case it was ... just one of those things.

If you do not feel better after your lady doc then seek a second opinion. What you really need is a patient professional.
posted by Lesser Shrew at 10:19 AM on January 24, 2014 [1 favorite]

I'm not a gynecologist, but I think what you want in any doctor is someone who can tell you what the research shows and treat you based on that. Your friend is putting the cart ahead of the horse, too, you don't even have an endometriosis diagnosis yet.

You don't want someone to act based on anecdotal worst case scenarios like "I had zero symptoms of endometriosis and then someone did surgery and I actually had the worst endometriosis ever!" That doesn't make sense. Not everyone who has zero symptoms of endometriosis needs surgery, just think about what that would mean for every female in the world.

I would ask your doctor about the evidence in the literature and then take a look at it yourself. There's a lot of technical language here, but this is the eMedicine page on treatment of endometriosis.

"Medical treatment of minimal or mild endometriosis has not been shown to increase pregnancy rates. Moderate to severe endometriosis should be treated surgically."

This isn't 1920s era stuff - everything there is referenced to actual medical literature, unlike your friend's screed.

Go to your OB/GYN appointment and talk about it. They may recommend more workup or using medical treatment first.

Two things that your friend said that I *do* agree with: if you want to have kids, and you get a diagnosis of anything that might limit your fertility, talk to your OB/GYN about it right away and consider not delaying having kids unless you really need to for some reason (i.e. not "waiting until I've had all the fun I want to have/traveled the world to have kids"). Infertility is no joke and it may be part of why your friend sounds so traumatized by her experience. I wouldn't wish it on anyone. Many people with endometriosis don't have problems with fertility but it's worth keeping in mind.

The other thing is "Better to have one good surgery than multiple surgeries that aren't as good." That's true. But get a professional opinion first, then consider who to use as a surgeon. I fully support the idea of second opinions for surgery and also going to someone who specializes in a given condition, who does the surgery all the time and has a lot of experience.
posted by treehorn+bunny at 10:43 AM on January 24, 2014 [4 favorites]

Harumph. Another endometriosis sufferer here, who was misdiagnosed for years.

I was on a bunch of discussion boards about 12 years ago, trying to find out as much as I could. A lot of the time I got conflicting opinions on my symptoms. Did you check out the Endometriosis Association yet?

I went on various forms of birth control (not needed because hubby has been snipped) but got tired of the side effects. Lupron was never mentioned by a series of female OB/GYNs, so I'm wondering whether that has been taken off the table now. In any case, it's more often used for severe endo, which you don't know if you have. (Mine is/was around one ovary and lower intestine.)

I had exploratory laparoscopy that lasered out my endo plus a ruptured ovarian cyst, followed by another round of laser surgery four years ago that took out some scar tissue and adhesions that had caused mild pain and discomfort. My regular OB/GYN did the surgery both times. Both ops were uncomplicated, although they took time to recover from. Like jbenben, now I'm symptom-free and very happy about it.
posted by vickyverky at 10:49 AM on January 24, 2014

I had endometriosis, had it zapped, and have kept it at bay with Ortho TriCyclen.

Stick with your appointment.
posted by RainyJay at 10:55 AM on January 24, 2014 [1 favorite]

Do you trust your OB/GYN? Do you feel comfortable with her? If so, I would keep my appointment on Monday and discuss it in detail with her. You don't need to hop on a plane right this minute and check into a hospital.

Your friend does seem to be jumping the gun a bit, but I can understand her feelings of urgency about it because endometriosis can end up being devastating. I was fortunate in that I had a child when I was 19, because just before my 30th birthday I had to have a total abdominal hysterectomy due to my advanced endometriosis. I spent years having doctors discount my pain and other problems and had almost convinced myself that everyone suffered like that each month and I was overreacting. When I met with my current OB/GYN, she was so kind and understanding and took me seriously that I actually broke down in tears during the appointment.

MeMail me if you want any more details or someone to commiserate with.
posted by notaninja at 1:05 PM on January 24, 2014

Whatever the deal is with your friend, try not to be too hard on her. People get whackadoodle over anything touching on fertility and it may be very, very important to her as a coping mechanism to earnestly and absolutely believe she has taken all of the data, research and options and made the single best decision that could be made to care for herself. The corollary to holding on to this view is that people who have made different decisions have made inferior choices, but that isn't her intent so try to gloss over that if it's what's going on.

Stick with your appointment, let your GYN tell you what she thinks, and make your decisions from there.
posted by DarlingBri at 1:53 PM on January 24, 2014 [2 favorites]

I lived with endometriosis for 5 years before it was diagnosed but this was back in the day; I had adhesions in my abdominal cavity even some tacking on the outside of my lungs. I had a laparoscopy twice (long before laser) to diagnose and treat to start with. I could not do birth control pills as those made me deathly ill due to an allergy issue.

I declined to do the treatment of the time, testosterone for 6 months because I was afraid of side effects. When a friend of mine died because it migrated to her brain, I changed my mind.

I took testosterone (the only treatment then) and felt better for months and for the first time ever became pregnant. This was after 8 years of unprotected sexual activity. I then went after that pregnancy symptom free for another 3 years. The symptoms started again and I went back on the testosterone after another laparoscopy. I never had the crazy side effects from the testosterone that everyone said might happen and neither did any of my other friends but evidently it is no longer the drug of choice. I became pregnant again after that round of treatment and after having my youngest child opted to just have everything out. During that pregnancy I had adhesions caused by the scar tissue and had to have 3 surgeries to snip and release so my body could expand around my growing uterus. It was miserable. Moral of this story: Some 28 years later I still suffer from the adhesions that were created by the scar tissue and so I still wish I had done everything right away to get this out of my body.

So I agree with your friend; go straight to a real specialist; sounds like you had a good name in NYC from young rope-rider, but don't mess around with this and be aggressive in getting rid of it. It can kill you.
posted by OhSusannah at 9:40 PM on January 24, 2014

You need a doctor who specializes in endometriosis, but you don't need to go out of state or hundreds of miles away to find one. Every city of any size has at least one - because endometriosis is much more common than you think. Here in Spokane, we have at least two gyn surgeons who specialize in lap surgery for endo - and they're good.

The one thing I would insist on, and the reason you need to see an endo specialist, is that the diagnosis be absolute. I'm not trying to scare you at all, but ovarian cancer can put implants all over the abdominal cavity just like endometriosis can, so it's really important to be certain that all you're looking at is endo.

If it were me, I'd get an opinion from your own GYN and then a second opinion from a GYN surgeon in your area, one recommended by your local medical society for endometriosis.

Best of luck to you.
posted by aryma at 10:44 PM on January 24, 2014 [2 favorites]

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