I hate this cyst.

[KrissyB]

This post is a rant..... and maybe a slight cry for help in case anyone has ever had anything similar.

Almost 6 months ago, I started temping and first noticed I had short LPs (8-9 days) and AF started coming with a vengeance - giving me the most painful period of my life, leaving me curled up on the floor whimpering in pain trying not to vomit. After a repeat performance the following month I was schedule for an ultrasound where they found a large complex ovarian cyst (5.3 cm). Here's a brief version of the timeline that followed.
Cycle 6, CD8 - Left Ovary: 5.3 cm complex cyst
Could be hemorraged corpus luteal cyst or endometrioma - my OB said I could go on BC pills for 3 months to see if it shrinks or try to get pregnant with some help (I was already TTC - so that was an easy option)

Cycle 7, CD2-6 – 50 mg Clomid
Cycle 7, CD14 - Left Ovary: 2.6 cm complex cyst
Clomid was painful, gave me a ton of side effects, and didn't change my LPs.... so I decided to switch to an RE instead of my OB for more help

Cycle 8, CD9 - Left Ovary: 5.8 cm complex cyst
Cycle 10, CD2 - Left Ovary: 2.5 cm complex
All blood work was normal, HSG clear, and the cyst appears to be shrinking, so the RE figured it was a hemorrhaged corpus luteal cyst that was resolving itself and gave me the go ahead for Letrozole (which should of had less side effects)

Cycle 10, CD3-7 – 5 mg Letrozole
Or that was the plan.... 3 days in I started getting the same pains and cramps I had on Clomid. Called the RE and he told me to get off the letrozole and come in in two days (as soon as I could) for another ultrasound and more blood work.

I hate this cyst. Really really freaking hate this cyst. For months I have gone through the most painful periods I could imagine, struggle with chronic cramps... oh, and I forgot to mention, two months ago the weight of the ovary+cyst twisted the mass down and back behind the ovary - so now it pushes on my bowls basically giving me chronic hemorrhoid like pain and constipation issues (Sorry for the tmi). All I can think of all the time is how tired I am of all this nonsense and how it just doesn't seem fair.... I am tired of it hurting, I am tired of all the second issues, I'm tired of not being able to conceive, I am tired of the tests and the appointments, I am tired of worrying I have cancer, I am tired of both my body and various therapies not working the way they're supposed to, I am tired of the emotional roller coasters..... I am tired, and I am uncomfortable, and I really really hate this cyst.

Sigh. Ok, I guess that's the end of my rant. I just needed to get that out somewhere...... and I guess in the back of my mind I can't help but hope that someone will read this and say "Oh! I had the same thing! Tell your doctor to check for x" and everything will be resolved......

 

[orionfox]

Ive never dealt with them but i just read up now to see if i could help you. I suggest since its persisting for so long now, that you look into surgery. One type removes the cysts and ovary, however here is the better one especially if the cyst isnt too big: Pelvic laparoscopy is done for smaller cysts. A small, tube-shaped microscope with a light at the end is inserted into the abdomen. The abdominal organs are visualized and through a tiny instrument the cyst is removed.

As from what ive read though, the bc pills wont shrink them, just helps against ovarian cancer.

 

[GalvanBaby]

I had one in August when I was pregnant. It measured 2.1cm the first time. Then it went down to 1.8cm a month later. Three months later, it was gone. If the cyst is causing you problems and it has twisted, they should remove it. My doctor said they would remove it if it shifted or caused any pain. I would insist that the doctor either remove it or get another opinion.

 

[orionfox]

Yes, if your dr wont remove it then do get a second opinion. You shouldnt have to live with that much discomfort over something that is removable. Drs are supposed to help not keep people suffering. You shouldnt have to put up with it.

 

[EmilieBrianne]

I went through the same thing for years it got so bad I didn't ovulate or have a period for 2 years then it came back so painful and so so heavy it was 10-20 days long I took birth control for 2 months and it made things worse not better and I had horrible migraines that would put me in the era from it too.All the doctors kept telling me it was normal because I needed to lose some weight even though I had a period when I was heavier and Now 7 doctor and 1 surgery later my periods are still heavy and painful but not as painful and lighter. The medicine my doctor gave me for pain really helps. But I have been ovulating every month since the surgery. I do have some damage on my left ovary because of the cyst the size of a golf ball they had to remove from it. I am seeing a different doctor than what did the surgery only because after surgery he said if I wanted him to continue being my doctor I would go on birth control. Because I am not married so I shouldn't be trying to get pregnant. I told him that it wasn't up to him. He says all of his patients are on birth control unless they are married and want a baby. I love the doctor I have now. Sorry I got sidetracked. Any way my point is keep trying doctors until you get answers and you are happy with them.

 

[KrissyB]

Thank you for your support ladies!! I never thought anyone would take the time to read my whole rant, forget actually posting a reply. I really appreciate the support.

I'm seeing the doctor tomorrow so I'll see what he says. I know surgery was somewhere on the table but I thought it'd have to be bigger before they'd consider it and I was worried about it diminishing ovarian reserve... but it's not exactly like I'm getting much done in the baby making department as is, so maybe surgery would do more good than harm (especially if it enables me take Femara or other fertility therapies).

 

[orionfox]

Yeah if its causing you horrid pain, then they should have no problem with doing surgery. If they want to try another option, get a second opinion. And if you have too, exaggerate a bit on the amount of pain. Its not like its not causing you awful discomfort. As for loosing some of your reserve, MANY women have gone on to conceive a child on just one ovary.

 

[KrissyB]

So I had a long talk with the RE. At this point, between the way it's fluctuated in size and how "complex" it looks on the ultrasound - it's basically confirmed as an endometrioma. Bad news is that it won't go away like a hemorrhaged corpus luteal cyst would have , good news is it shrank (even if only temporarily) to be cancer atm .
As for surgery, my RE said it's something we could consider but he doesn't think it looks like it'd buy me that much right now since the cyst isn't that large... and since I'm not in THAT much discomfort... as long as I'm not on fertility drugs lol. So it's a catch 21 - Pregnancy will shrink the endo (potentially) entirely, need fertility drugs to get pregnant, fertility drugs makes the endo worse lol. And in a little more not so good news, in listening to my symptoms, he thought it was very possible I have endo growths elsewhere causing some the less ovary-related pains. But they wouldn't be able to tell until they were in there for surgery.

And.... the best news of the day is that (unlike Clomid) the discomfort that the letrozole caused was not for nothing!! I've got EWCM and an ALMOST positive OPK on CD10!! I don't normally ovulate until CD19-20! And while it is really freaking annoying, I can bear some discomfort if I know it's working us towards the goal (Heck, my DD was a big baby, so in my mind pregnancy is a lot of discomfort all for the same end goal too). So I'm not counting myself out for a christmas miracle yet!

 

[GalvanBaby]

Hopefully, you'll get pregnant this cycle and they can remove it when you deliver. My doctor had said that if it was still there when I get pregnant, they would have done a csection and removed it as well.