A year & 1/2 after ovarian cyst surgery - an update

[Curls]

I had oopherectomy last January for 4-5" cyst. Here's an update that I promised.

It was symptomless, but growing slowly & gyno-oncol were split on whether I should do the surgery or watch & wait (until when?). All placed cancer risk at <5% meaning >1%.  It was endometrioma, but there was only one other spot of endometrosis inside. Luckily it hadn't attached to my insides the way some of these cysts do when they get bigger.

I have CFS & it definitely improved with the removal! Took 3-6 months to get back to "normal", but then it was higher functioning than since got sick 10 years ago. Not a cure - but important.  

It took at least that long for insides to "heal" and feel more normal. Much longer than I expected from the doctors comments. They say when you can function again at all, not when you're recovered.

Period returned to normal in a few months & now not seeing the spotting I had before surgery that dcts blamed on age (getting closer to perimenipause). So it was the cyst.

I had several doctors tell me pre-surgery that endometrial cysts don't become cancer & the slow growth meant it wasn't cancer - while warning me to watch very closely. However, the surgery photos of it were gross & that thing didn't belong in a body (big black spots, white clumps). Obviously it was causing some sort immune system load for me to feel much better without it.  I hadn't noticed it while in, but even right after the surgery there was a sensation of a "lack of sensation" at the spot inside, so I guess it had been pressing.

I finally decided, when the Hopkins oncol told me it's a good place to harbor cancer when it's that big & growing. And my mom emphasized that tests aren't perfect - the visual in there is much better.

It turns out cysts aren't usually outside the ovary. They are inside. The cyscetomy scoops it out. When it's big enough the ovary wall gets too thin for anything to scoop. In my case it had grown into the blood supply on both ends & the fallopian tube was visibly stretched.  Endometrioma's are much more common in CFS & FM & related conditions than the general population (according to studies).

Because of CFS I had shorteness of breath for weeks after surgery. My GP said, of course, a spectrometer would have helped! Instead Hopkins had me checking for blood clot. They can be deadly, but I wish I'd known to ask about the other thing.

[freshair]

Wow, your experience can really help others. Thank you for sharing. And thank God you don't have this cancer.

[Med Mystery]

Hello!

Thanks for your update.  Who did you see at Hopkins?  Also, who did your surgery?  Was just one ovary removed?  

My doctors have also told me similar things regarding my cyst, spotting, age,  etc.  My ultrasounds have described my 3.0 cm cyst as a "probable endometrioma".  It has slowly enlarged over time and has not resolved on its own.  Some doctors have suggesed endometriosis also but during my fibroid surgery a few years ago, no endometriosis was found.  I thought it was interesting that a spot of endometriosis was found during your surgery and am now wondering if that could be my situation also.

Please reply regarding the above and any additional info.  Like you, I have also have had immune and fatigue problems over the years.

Thanks!    

[Curls]

Thanks for your comment.  It does look so different in hindsight without the stress...  I knew in my gut it wasn't cancer, but when the doctor told me right after surgery, I did cry in relief for stress I didn't even know I had.  

All the best with your situation!!!

[Curls]

Hi!  Let's see my surgeon at Hopkins was Ginger Gardner, which is the oncologist-gyno that I saw.  She's left in June for a NY hospital (Mt. Sinai?)  & is referring all her patients, I think it was to the dept head.  There's a webpage of the dept on the Hopkins site & ALL of them are very good.  She was the least experienced & I was a relatively low risk, with no direct referral, so I think that's how I wound up being assigned to her.  The one's I wouldn't refer to were in private practice & associated with other hospitals in the area (I can give names privately to you, but not in a public forum...)  

I don't think the spot of endometrosis was effecting me in any way.  It was supposedly 'odd' to see a large endometrioma with no endometriosis, but it had a normal sense to me.  I actually got the sense afterward that it does happen, it just isn't what they expect to have happen.  My gyno reminded me that it's called the great pretender - just never know what to expect.  Lots of pain from one spot, or no pain with tons of it everywhere, are not unusual situations.  I did have the one ovary & tube removed & nothing else including leaving a small fibriod.  Everything else looked healthy from inside.  There was something else small too that they checked on, but I don't remember at the moment.  

We'd been watching my complex cyst from 3cm on for a couple years of slow growth.  Then it got faster & the key was when it septated (some term like that).  That really can be an indication of cancer.  But the slow growth & probable endometrioma were a counter-indications, but the complex with septation was an indication, but... the doctor's were confusing because it didn't fit neatly into their catagories.  I wish they'd just said that though.  Instead they made me feel like an idiot.

It's funny I remembered somethng just a few minutes ago before checking in tonight & thought about posting it.  It must have been so I could tell you...I remember one of the doctors telling me they don't operate on small cysts less than 3cm because it can be hard to get at them!  The ovary wiggles around during the surgery & 3cm is just too small to be sure they got it, didn't miss cancer if that was in there, etc..  BTW, a lot of doctor's like to take out the whole ovary.  The nice thing with Hopkins & some others is that they will work harder to save it with a cystectomy.

My gyno had pushed me to operate when it was first found & I put it off.  Wish I hadn't.  When smaller they might have saved the ovary.  It wasn't much risk at the time, but I didn't know it was 1 in 100s or 1000s, not 1 in zillions, or I would have gone for it.

Have you been specifically diagnosed with CFS or similar?  When I was on the forum around the surgery, I found a number of posters how CFS or related issues or autoimmune conditions, but weren't mentioning it often.  That was one of the reasons I wanted to post about the difference having this out made in my health.  My CFS was post-viral but something hadn't been right for a few years before but very subtly & all my life I got "colds/viruses" (although not bacterial) infections easily.  

Well I've said enough.  I tend to write more when it gets late & I get tired.  Let me know how you are doing & what you're wondering about!  Good luck with everything!!!