Scary abdominal surgery that's still sort of optional.

August 6, 2013 11:11 PM

I don't require surgery. Yet. Yet is the word that I keep thinking. I think I'm better off planning surgery now than needing it as an emergency, which is a possibility (but I don't know how likely). I have a 8 cm simple cyst just chilling between my ovaries. It was discovered in May due to a (probably) unrelated MRI. Following up with an ultrasound has shown that a) it doesn't appear to be attached to my ovaries, or anything else and b) it hasn't changed since May. Of course, I have no idea how long it's actually been there. My doctor doesn't think surgery is *required*, but is sort of recommending it. I'm scared. I don't know how to plan for this, or what questions to ask.

I'm asking this under a sock puppet account, since my main one is clearly associated with my name.

I have no idea how to be sure I'm making the right decision. I don't know anyone personally who has had a similar surgery. I have a low pain tolerance and a tendency not to ask enough questions because I freeze up. I haven't had a real surgery in my adult life (unless you count wisdom teeth, but I didn't plan that, I just had to show up - and I can only remember bits of it - although luckily that means I'm sort of familiar with the anesthesia part of things).

I currently have some minor amounts of pain (sort of a cramping feeling). It's hard to tell if it's from the cyst or unrelated. The pain started in the last month, and I've known about the cyst since May. The original test that discovered it was an MRI on my hip. The hip pain predates the knowledge of the cyst by at least six months, with no known cause (still). That pain comes and goes and is mostly manageable but frustrating.

My GYN says she would get the surgery herself, but seems hesitant to completely recommend it. It's not certain that it's needed, and abdominal surgery you don't need is not a great plan. She's referred me to another specialist for a second opinion. I'll be seeing them next week.

I am so scared. I am tearing up just trying to get my thoughts out. I don't know what questions to ask, or what to be prepared for. I'm confused and stressed and the decision is 100% on my shoulders.

In reality, I've pretty clearly decided I should push through with surgery. That's kind of bad, as far as making sure I think it through and get answers to everything I need first.

What should I be asking about? How can I be confident I'm making the right decision (as much as that is possible, anyway)? Honestly, I'd be pretty happy to just get a lot of hugs and reassurance about all this, but I'd prefer not to get any generalized platitudes like "oh it'll be okay" if they're not based on personal experience.

posted by anxioushermit to Health & Fitness (16 answers total)

Are they planning to cut you open, or is this a laparoscopy?

Plus, my understanding is there is now an even LESS invasive way to remove cysts - sorry! Don't know what that is.

Imma tell you a little story...

About 20 years ago now, I had ridiculous pain, cramping, and eventually nausea. I went to six doctors in 4 years, three of then GYN's, and none but the last had the brains to give me a ultrasound and diagnose the endometriosis (cysts.)

2 weeks later I had an easy peasy laparoscopy. Pain free ever since!

Cysts cause weird weird pain, or sometimes, no pain at all.

Get your second opinion. Evaluate your options.

Be thankful this was caught after a few months, and not a few years worth, of pain.
posted by jbenben at 12:01 AM on August 7, 2013

I have had quite a bit of abdominal surgery over the years. I am in the UK. I have found that post-surgical pain management has improved immeasurably since the 1990s and that has made a great difference. In my most recent two experiences I was given control of my own morphine, via a shunt. This was great for me. I barely needed to use any of the morphine, but just knowing I had the option gave me a feeling of control. I also believe it helped me to recover faster. I would therefore discuss pain management options in advance with your medical people.

Again I am just speaking from my own experience, but I found the pain following simple surgery like you are facing dissipated quickly during the days after surgery. I was back on my feet quite soon.

And arising from this, I would say that earlier rather than later surgery may be a good option because that is more likely to be a smaller operation, hence the quick recovery.

All of this is just my own experience, trying to think of the factors that made surgery easy: to summarise, a small/early operation, patient control of pain medication.
posted by communicator at 12:02 AM on August 7, 2013

My father who was a surgeon for 40 years always says "If there is a non-surgical solution, take it."
posted by three blind mice at 12:16 AM on August 7, 2013

I have a low pain tolerance

Then I would have the surgery because recovery from a relatively simple planned procedure is going to pale in comparison, pain-wise, to the potential pain of a burst cyst.

I'd ask:

-- If the surgery will be laprascopic and why or why not
-- What kind of anaesthesia is planned (general, twilight, etc) and what the risks are
-- If the anaesthesia will be administered by an anaesthetist or by another member of the surgical team
-- How long you should anticipate being in hospital for
-- What the pain management in hospital will be like
-- What pain meds you'll be able to go home with
-- What the post-op recovery time is like
posted by DarlingBri at 1:26 AM on August 7, 2013

I've had way too many surgeries, most of them back in the late 1990s. If you have the option to choose between general anesthesia and twilight sedation, go for the twilight. In several of the surgeries I had, recovering from general anesthesia was almost worse than recovering from the surgery itself. Waking up from twilight sedation, you feel groggy and out of it, but you bounce back pretty fast. Waking up from general anesthesia feels more like waking up from a coma after you were hit by a truck.

The anticipation before a surgery is usually worse than the recovery. Most of my surgical recoveries were about on par with having a terrible flu for a week or so. You feel like crap, but you can survive it. But seriously: always go for twilight, if you can.
posted by Ursula Hitler at 3:38 AM on August 7, 2013

+1 on the planned procedure now-ish vs. the angst and pain for an indeterminate time.

Plus: a burst cyst can be a very serious situation, a growing cyst can attach to the ovaries or the colon and be much harder to remove.

Your cyst is bigger than a tennis ball now and has not disappeared in 3 months - those are reasons for the GYN to recommend surgery (which she did IMO by saying she would have it removed and referring you to a specialist). Most cysts resolve naturally but most cysts are smaller to begin with. The only way to monitor the growth would be frequent probably transvaginal ultrasounds, which is not feasible.

Now you can schedule the procedure for a convenient time, you can prep your home, ask friends and family for help. Here are some older ask.mes with relevant info about prep and post-op time:
Ovarian-Cystectomy-FreakOut
What-do-I-need-to-have-on-hand-after-abdominal-surgery
Laparoscopy-Surgery

Next week when you see the specialist and they say to go for the surgery, talk about your low pain tolerance and the anxiety. The questions as outlined by DarlingBri are a good start.
You can make a list and bring it with you if you know you freeze up on the spot.
posted by travelwithcats at 4:16 AM on August 7, 2013

I'm as biased as the young rope-rider on this one. I had over 20 years of on-again, off-again pain and I finally had laproscopic surgery for pelvic adhesions and it turned out I had a peach-size (why they use fruit as a measuring device is beyond me) cyst.

Frankly, I had a fairly shitty recovery because I didn't ask questions and I didn't know what to expect. I learned:

* don't take narcotic pain relievers after 2 days because they interfere with your body's pain receptors (in other words, the more Percocet I took, the longer my body thought it was in pain);
* get up and walk as much as you can, but don't start running 5 miles after three days (I was an idiot, because the breakthrough bleeding was insane and scary and I was too wiped out to get up and walk);
* use hot water bottles or heating pads to deal with the abdominal gas-bloat;
* find the position that works for you and REST (I was flat on my back until I realized I wasn't helping my recovery. Once I sat upright it was all better.);

AND...

thank god I did it. After all those years of pain, it was an absolute miracle to become pain free.
posted by kinetic at 4:37 AM on August 7, 2013

IANYD, but I'd have the surgery too. It would frighten me too much to know that I had a large cyst in my pelvis that might rupture at any time, because that tends to be a terribly painful experience.

I would ask your doctor about whether this cyst looks amenable to percutaneous needle aspiration and whether that option might be available to you. What that means is that an interventional radiologist locates the cyst and puts a long needle into the cyst and drains the fluid out of it.

Because it doesn't involve opening up your abdomen, recovery is fast and it could be done under 'twilight' sedation most likely, rather than general anesthesia. If this were a possibility (it may or may not be depending on the location of the cyst and other factors) then it might help you make your decision.
posted by treehorn+bunny at 5:33 AM on August 7, 2013

As someone who had to have emergency surgery because of a burst cyst I can agree with DarlingBri. The pain from recovery was nothing compared to the pain from the cyst.

Surgery pain was more like, "oh that hurts when I do that" or "I don't really want to stand up straight." The pain from the cyst was more like, "I AM GOING TO DIE MOMMY WHATS HAPPENING WHY AM I DYING?!?!?!?!?!"
posted by magnetsphere at 6:28 AM on August 7, 2013

Let me set your mind at ease. I had a laproscopic hysterectomy. I was scared because I had never been out under anethetic and I had never had surgery. My experience was awesome, it was as pleasant as a spa day. No shit!

Everyone was super nice to me, and very concerned about making me comfortable, especially with pain management. Before I started anesthesia, I was given a Valium (for fun apparently) and a transderm scope, for nausea. When I came out of surgery, I got a morphine pump. I fooled around with it, felt great and then put the plunger away because I was just playing with it.

When I got home, my only pain felt like I had done too many crunches. It wasn't at all bad and I didn't take my prescription at all.

I was back at work in two weeks.

I mostly just slept off the anesthesia.

Sweetie, do the surgery. Cysts are no fun.
posted by Ruthless Bunny at 7:23 AM on August 7, 2013

I had a 9cm simple cyst on one of my ovaries, and when I received conflicting advice from two specialists (SURGERY NOW vs. Wait six weeks, it might go away on its own) I chose to wait and see, and my cyst did disappear within about six weeks. However, both of the specialists agreed that if a cyst of that size were around over the long term, it would need to be removed.

If I were you, I would have the surgery. While my cyst did not burst, I had one incident of extreme pain, probably caused by temporary torsion (twisting--a thing that happens with ovarian cysts.... might not be an issue for you if it's not attached in the same way). I have a fairly high pain tolerance, and it was bad enough that I went to the ER. If you have surgery, you'll have pain management plans in place to deal with the recovery... but if you have a "cyst accident", as they say, you won't be prepared, and it will be terrible.
posted by snorkmaiden at 7:24 AM on August 7, 2013

I got laparoscopic surgery on an ovarian cyst (and they discovered my extensive endometriosis while they were at it) and while recovery wasn't as easy as I had hoped, I'm glad I did it. I was tired of feeling painful twinges and waiting for a possible torsion/bursting incident. I think recovery would have been much better if I was able to handle serious pain meds like Percocet, which just makes my heart race; instead I relied on mega doses of ibuprofren, and even with that, the pain wasn't unbearable, and only lasted a few days. I'm sure I responded to the related questions posted above if you want more info about my experience.
posted by chowflap at 7:59 AM on August 7, 2013

While my cyst did not burst, I had one incident of extreme pain, probably caused by temporary torsion (twisting--a thing that happens with ovarian cysts.... might not be an issue for you if it's not attached in the same way). I have a fairly high pain tolerance, and it was bad enough that I went to the ER. If you have surgery, you'll have pain management plans in place to deal with the recovery... but if you have a "cyst accident", as they say, you won't be prepared, and it will be terrible.

This is what happened to me, except in my case it didn't untwist and they had to take the whole ovary out because it was too messed up. I had no idea anything was wrong prior to the pain setting in and having to go to the ER so this was a totally out of nowhere thing for both me AND the doctors. And "extreme pain" is exactly right to describe a "cyst accident" like that - I have never had pain that bad in my entire life. Even breaking a bone paled in comparison.

But even that rush-job of a surgery was actually pretty easy to recover from. I actually speak about my recovery in two of the threads travelwithcats links to above - I think I had a prescription for pain relief, but didn't use it all that much because it was more soreness than super-pain after the surgery.
posted by EmpressCallipygos at 8:37 AM on August 7, 2013

If I were you, I'd have the surgery, after seeking the second opinion. I haven't had surgery for cysts, but I have had two gynecological surgeries for fibroids, and I am so glad I had them because I am not walking around huddled over in pain anymore. From what I understand from my friend who has ovarian cysts, they can cause weird intermittent pain, so your hip pain could possibly be radiated pain from the cyst (just a guess).

Anyway, nthing asking if they can do laparoscopic surgery. That type of surgery usually has a short recovery time and tiny incisions. One of my friends had a laparoscopic hysterectomy a couple of years ago and she said it was a great experience and an easy recovery. She showed me her scars and they are barely visible.
posted by bedhead at 9:01 AM on August 7, 2013

Get a second opinion soon. I would have the surgery if I something that should not be in my body...I had horrible endometriosis that was not diagnosed for years. Over time I had 7 different surgeries because of the scar tissue. Twice when I was pregnant because the scar tissue was ripping and painful....my surgeon was amazing and made me feel totally comfortable....so be comfortable with your surgeon...
posted by OhSusannah at 8:34 PM on August 7, 2013

Thanks everyone for all your answers. All of your stories made me feel a lot more confident that I was doing the right thing.

I thought I'd update this to let you all know what I did and add a few more bits of info for anyone who finds this later and needs advice.

The surgeon agreed that I should do something about the cyst, mostly because of the size.

I chose to have it drained by an interventional radiologist, since it was less invasive than laparoscopy. The major downside is that the cyst may just fill back up with fluid and leave me approximately where I was before, but with more information about its nature and symptoms, so I may still end up requiring surgery.

The things I learned / was not prepared for:
- At the surgeon's office (even just for a consult), they ask if you have a living will. Luckily this didn't become a huge anxiety trigger for me, but it did catch me off guard.
- I was far more anxious beforehand than I expected. I didn't pursue anxiety meds aggressively enough. It was hard to gauge because I was relatively calm right up until I wasn't.
- The hospital was a mostly pleasant experience, as promised. The anticipation was by far the worst part.
- I was told that they may have to leave a drain in for a few days only 5 minutes before the procedure began! I was in a bed with an IV in my arm, next to the cat-scan machine. This is one of those things I wish they would tell me beforehand that I don't know to ask about. Thankfully they didn't need to do this, but this is exactly the sort of thing I was hoping to avoid. I dislike surprises.
- I had some sort of twilight sedation. I didn't ask exactly what. I remember bits of the procedure in a very dreamlike (and not at all scary) way. Unfortunately, sedation makes me REALLY super nauseous. I threw up once in post-op, but I felt fine when I left the hospital. I don't think they expected major problems. I spent the afternoon puking out the only food I'd had to eat all day (they gave me toast and juice and it was delicious, I was sad to have it go). I called the nurse, because I didn't know how long it was going to continue, and I knew it wasn't normal. She told me it should go away within a few hours, but if it didn't I needed to go to the ER to get anti-nausea meds. It did get better a few hours after the procedure, but I ended up super dehydrated and miserable. I don't think there was a way to know this beforehand, or for it to be obvious post-op. Maybe I should have just rested there longer, but I was anxious to get home.

Since I'm still recovering, I'm not currently in the "so glad I did that" category, but I don't regret it either. I do hope I don't have to do anything similar again, but I know now which things are a problem and which are not.
posted by anxioushermit at 8:08 PM on August 29, 2013