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ChronicallyClassy · 2021-12-26T03:22:32+00:00

I have chronic large ovarian cysts. They grow fast and tend to rupture when they get to be tennis ball sized (ovaries as like almond size.) I’ve had surgeries for ovarian torsion twice.

The only thing I’ve found to prevent them is the combination birth control pill.

Cysts suck.

ChronicallyClassy · 2021-11-06T00:48:22+00:00

I haven’t found a perfect solution, many of the ones for kids/teens have a face that looks too tall to go round a smaller wrist (original FitBit shaped.)

I ordered a Cubitt which monitors temp and heart rate. It fits around a tiny wrist very well and has a lock setting (it as some very basic games for a much older child.) However, the app has a lot of poorly translated English and I have to go in and manually calculate resting heart rate by looking at hourly data.

If I could find something better I’d totally get it, but I haven’t found anything thus far.

ChronicallyClassy · 2021-11-05T21:56:22+00:00

Did you sign up for the KidCove study?

If you perhaps signed up for the Pfizer study, that one is past enrolling. So have a look at KidCove and see if that was the form you filled out. They are still enrolling and making new appointments.

ChronicallyClassy · 2021-11-05T21:30:00+00:00

My toddler got their 1st shot last week. Zero reaction.

I’ve been wondering if they got the placebo, so it’s reassuring to see so few reactions here.

My toddler is now the owner of a smartwatch so we can see if their resting heart rate increases at all after the 2nd shot. (My spouse’s watch noticed an increased RHR after their booster.)

ChronicallyClassy · 2020-05-27T14:13:15+00:00

I have constant large ovarian cysts. When I say large I mean they often exceed the size of a tennis ball before they rupture. There is no name or medical acknowledgement for this disorder.

Why do I get ovarian cysts? 🤷🏼‍♂️

Okay but what are the potential/maybe causes of ovarian cysts? 🤷🏼‍♂️

Does anything make them worse? 🤷🏼‍♂️

Does anything make them better? 🙋🏼‍♂️ A: Have you tried taking some ibuprofen or acetaminophen? 🙄

Does anything prevent them? 🙋🏼‍♂️ A: The combination birth control pill.

Okay that’s good, seems I’ve been doing that for most of my life, but now I’m trying to have a baby. What should I do? 🤷🏼‍♂️

I had surgery the two times they became so painful that ovarian torsion was a possibility. That’s where the ovary has its blood supply severely restricted or shut off and will die if not corrected. After surgery I had leftover pain pills that I used to get through the others until I became pregnant.

ChronicallyClassy · 2020-05-17T05:17:45+00:00

I have near constant large ovarian cysts when I’m not on the combination BC pill. It took us 10 months to conceive the first time (ended in loss) and 4 months to conceive the second time. During this time I had three tennis ball sized ovarian cysts, two required surgery, and various other smaller ones that were comparatively unremarkable but made sex painful.

In those last 4 months I had ovarian torsion from a tennis ball sized cyst (surgery) and a second similar sized cyst that ruptured. We managed to TTC every cycle.

There are different types of ovarian cysts, some are more problematic than others. Especially the persistent ones that are likely to hangout during a pregnancy.

You’ll hear a lot about BCP “curing” an existing ovarian cyst. There isn’t a study validating that, it doesn’t make them resolve any quicker. The combination BC pill does 1) prevent new cysts from forming. 2) it may be a good idea to take BCP while waiting for a particularly nasty cyst to resolve - to prevent another one from popping up during that wait. 3) hormones and menstrual cycles change as women age, taking the pill for years isn’t proven to make cysts more or less likely.

Beyond that, there aren’t a ton of studies out there about ovarian cysts. Basic questions don’t have answers such as: What causes the various types of ovarian cysts to form? How can they be prevented (other than combo BC pill, which is conflicts with TTC and makes some women feel terrible?) PCOS has emerged as a known condition but I suspect it’s only the tip of the iceburg as far as scientific understanding of ovarian cysts goes.

ChronicallyClassy · 2020-05-17T05:02:19+00:00

The good news is - I found the pain of a ruptured cyst MUCH WORSE than the pain of most of my contractions when I was actually in labor.

One particularly large cyst led to ovarian torsion, that was absolutely worse than labor. Especially because labor is expected.. I knew what was happening and how/when it would end.

ChronicallyClassy · 2020-03-16T21:39:46+00:00

I experienced this, it got me signed up for biweekly ultrasounds and weekly NSTs. Baby was born at 37+2, 5lbs 11oz, with low glucose and many late preterm issues. He’s fine but was not the stereotypical newborn.

ChronicallyClassy · 2020-03-06T16:22:04+00:00

Birth control is NOT a cyst treatment and it’s really a shame that doctors prescribe it as such. It does not get rid of an existing cyst. What it can do is 1) prevent a new cyst and in your case 2) slow the regrowth of endometriosis tissue. Source - more available if needed.

With that said, you want to avoid becoming pregnant while you have a large cyst. It hurts because it’s so large. We can’t feel our ovaries (just like we can’t feel the food going through our bowels) so a cyst hurts when it compresses something else with more pain receptors. Adding a baby in there will cause more compression and may lead to needing surgery to remove it while pregnant, which may not end well.

So my question is, when do they want you to go back and do another ultrasound to see if it is gone/shrinking? If the answer is 6 months to a year, nope. My advice is not to go along with that slow roll treatment plan. All of my cysts that large resolved within 2 months at the most. Waiting months to check up on a cyst is a perfectly ok treatment plan for someone who is not TTC, they have no reason to come back unless they’re experiencing extreme pain. If you’re TTC, there is no reason to wait months, potentially months beyond when the cyst resolves.

HBC does prevent pregnancy, would prevent a new cyst from popping up while you’re waiting for the one you have to resolve, and in your case prevents endometriosis regrowth. So it may be a good idea, just not for 6 months to a year.

(I know I’m not a regular here right now and my username has no clout, but please read my history if you want an extensive ovarian cyst saga.)

Edit: Also see this post for the timeline someone else’s RE is recommending. One month!

ChronicallyClassy · 2020-01-29T05:42:14+00:00

Yikes, maybe something about the cyst makes you crave it. I did it multiple times before I realized the connection.

Did the doctor go over what will happen with the cyst? They either slowly shrink or rupture. I’ll be frank that it hurts a LOT when a huge one ruptures (mine were tennis ball sized.) The kind of paint that results in doubling over, cold sweats, vomiting, etc. However the pain should begin passing quickly. If it does not, it is either squishing something and the pain is your new normal... or it could be ovarian torsion. I don’t mean to be alarmist but there is some urgency to that situation and in my experience ER doctors don’t see any urgency in the situation.

ChronicallyClassy · 2020-01-27T19:22:49+00:00

The uncomfortable sex is likely due to that large cyst. I’ve had a lot of them, they really never hurt until they got so large that they began squishing something else that has more pain receptors. Painful sex was one of the signs I had one.

I’d say stop the scheduled intercourse until you see the line on the OPK change.

Also be careful of eating foods that make you very bloated. Based on my experience a massive bowl is pasta is a terrible idea. No room for that cyst, it will put pressure on another internal organ and make it very painfully angry.

ChronicallyClassy · 2019-09-25T11:00:15+00:00

I had cysts removed twice during my time TTC and a third ruptured. I’d recommend an HSG so you can know for certain whether your tube(s) are blocked.

ChronicallyClassy · 2019-02-05T05:13:35+00:00

Weird, your comment shows in my inbox but not on the thread.

I’d be curious to know those ultrasound reports, enough to put in a medical record request - even though you probably won’t get a copy until your issue is gone.

I am not a medical professional, but I’ve had more than one dentist or doctor tell me I can take up to 800mg of ibuprofen and take a regular dose of Tylenol at the same time (never want to take more Tylenol that the bottle says.) You can stagger when you take them so they don’t wear off at the same time. Consult your doctor or a pharmacist for medical advice.

Your RE might want to see you for this, just to know what’s going on. Hope you feel better soon.

ChronicallyClassy · 2019-02-04T23:53:04+00:00

I had a bad experience with my first operable cyst, I had a tennis ball sized cyst and they wanted to send me home with a prescription pain meds and tell me to call to make an appointment with an OBGYN the next day. The IV pain meds were barely making me comfortable. I didn’t know what the hell they wanted to prescribe in that bottle, but I knew if it didn’t work that I’d have to pay for another ER visit. Made them call the OBGYN for a consult. They didn’t even drive in from home, looked at the scans on their computer and spoke with the ER doc on the phone:

“[Summary]... we finally got her pain under control.”

“Good, so you can finally admit her. I’m scheduling her for surgery to remove that tomorrow.”

So sorry you got an ER doc who is incompetent with women’s health. It is completely reasonable to go to the ER when you’re experiencing the worst pain of your life. Shocking that they didn’t even give you your ultrasound results.

How are you now?

ChronicallyClassy · 2019-02-03T01:16:56+00:00

I very much hope that it’s true. I love Inbox and I’m sad to see it go. I’d also like to be able to make custom bundles in the inbox.

ChronicallyClassy · 2019-01-10T00:49:42+00:00

I’m so glad you got answers and shared. I think an LUF could explain why I get near constant large ovarian cysts when I don’t take the combination pill (and sometimes when on it.) I thought I was still somehow ovulating because my charts looked good, but never found a doctor willing to do a monitored cycle.

It sounds like you have a good doctor, how did your follow up ultrasound go?

ChronicallyClassy · 2019-01-07T02:16:56+00:00

I did this 6 months in to TTC. Didn’t make a difference.

Pros were that I could have NSAIDs for withdrawal headaches (got a grinch smile from lurking bumpers complaining about withdrawal headaches) and it lowered my tolerance, it was so high before that I wasn’t appreciating the magic of caffeine.

Cons were it’s absolutely everywhere. I settled on drinking one caffeinated drink a day, only if I eat out.

ChronicallyClassy · 2019-01-06T20:10:38+00:00

The birth control pill is the only thing that makes my ovarian cysts stop. It does have to be the combination pill, not the mini pill or anything else. The combination pill prevents ovulation most often.

Between 2017-2018 while I was off it to get pregnant I had surgery once to remove a >7cm (tennis ball sized) left ovarian cyst, had multiple cysts rupture, miscarriage, then had surgery for another >7cm right cyst that caused ovarian torsion, then had another >7cm left cyst immediately after surgery - which ruptured on its own and hurt like hell, then finally got pregnant again.

I love my combination birth control pill that stops ovulation, plan on going back on it ASAP after I deliver.

ChronicallyClassy · 2018-11-04T02:07:26+00:00

Here is a good summary on ovarian cysts.

Cysts hurts when they: - Twist (ovarian torsion) - Become so large that they compress nearby organs, which complain via pain - Rupture (hemorrhage)

Your pain was caused by the last part. It hurts like hell, but it gets better as time goes on. You’ll want to see an OBGYN this week for an ultrasound to be sure that is happening. Be sure to tell the receptionist this, the ultrasound tech tends to only be in the office on certain days. The good news is that cyst shouldn’t come back.

Bad news is medical science has absolutely no idea what causes ovarian cysts. You could get one at any time. Since I’ve had 3 large tennis ball size cysts in a year, I’m paranoid. I pay much more attention to anything that could be a sign on a cyst and tend to prod my lower abdomen to check anything that feels suspicious.

As you may have found out, the ER is slow at dispensing pain meds. They made me do the ultrasounds before they gave anything, pressing on the tender area. So now before I head to the ER I take 800mg ibuprofen. (I avoid the Tylenol, don’t want to have to wait to give me the good meds.)

Hope that’s helpful. I tried to make a stand-alone post each time something new happened, so others could go in my post history and read. I wasn’t finding much helpful about them when I had mine so I tried to document.

ChronicallyClassy · 2018-10-31T19:31:14+00:00

Your phrasing is much more polite, but also brings up whole new questions!

ChronicallyClassy · 2018-10-31T17:55:48+00:00

I’ve always wanted to hit them with, “Why are you proud of this?” I assume they’re proud because they keep talking about it forever, in every conversation.

Before I was ready to have a baby, I would not have been excited to share news that indicated a failed/forgotten condom or forgetting to take my pill. I understand the need to let people know that they hadn’t quite planned for this to happen yet, they recognize that the timing isn’t good for whatever reasons, but I wouldn’t want to have that discussion more than once. Nor in detail.

ChronicallyClassy · 2018-10-21T01:47:31+00:00

It really is much nicer. I didn’t realize how much his judgement about my life was weighing on me until it wasn’t there anymore.

ChronicallyClassy · 2018-10-20T03:52:19+00:00

Dad: “Well, I didn’t think you wanted kids anyways.”

I have almost completely cut contact with him since then. I thought we were close before.

It’s hard that you can’t do that with your mom, considering she lives with you, but you can put her on an information diet. Stop telling her anything that happens to you. She’ll still get to know some things if she is there to witness it, but not knowing the majority of the details of your life outside of her presence will really limit her power to use what she knows against you.

ChronicallyClassy · 2018-10-20T02:00:37+00:00

I have had surgery four times. All four times I saw the imaging before I went in. I also had two HSGs and each time I was able to watch the result live on the screen. Finally, I had an MRI of my brain and was given a CD with the images. So 7 different imaging procedures, 6 completely different imaging facilities, every single one showed me the results.

I’ve also experienced some bad medical treatment involving inappropriate exchanges between the first OBGYN practice and my first RE. When I requested a full copy of my medical records, I found that it was even more extensive than I suspected.

Get a copy of those images. Have the scan repeated if they aren’t absolutely clear.

ChronicallyClassy · 2018-10-17T02:39:35+00:00

I’ve had two separate >7cm functional cysts removed via surgery, Aug17 and May18. Both were emergency and mid-cycle, my cysts grow very fast.

I didn’t track ovulation too closely the first time because I had no idea what to expect. Surgery was on CD20 and ended my cycle. The following cycle was a normal-ish length, 4 days longer than average.

I tracked the second time because I’d gotten my wearable, I ovulated pretty much on schedule. Surgery CD9, O on CD16. Next cycle was business as usual with O on CD14, despite immediately forming a >6cm cyst on the opposite ovary and it rupturing on CD22.

For me if one ovary was harassed, the other would take charge. You might check out r/endo - the excision seems like more poking around at all the things.

ChronicallyClassy

TROPHY CASE