Frustrated (ovarian cyst)

I’ve been dealing with chronic, persistent large ovarian cysts on and off for 3 years. I was previously treated with depo lupron (successfully) after having a cyst removed that returned a week later. They’ve been returning but haven’t caused the extreme pain again until now. I’ll add, I lost my right ovary due to torsion from a large cyst.

My most recent cyst made itself known on Thanksgiving, I toughed it out until it became unbearable & went to the ER 5 days later. They did an ultrasound where I later found out they didn’t even visualize my ovary (I have had multiple abdominal surgeries so perhaps it was scar tissue), I was discharged with the doc telling me he didn’t know why I had pain & didn’t treat or address the pain... So, I saw my primary doc who told me it was my ulcerative colitis acting up, prescribed Flagyl & Cipro (again, nothing for pain). Five days of taking the antibiotics, I had no improvement so I called back, she put me on prednisone. All this time I’m telling my husband: This is not UC Pain! I have no UC symptoms AT ALL!

Two days later I was in even more pain, couldn’t sit still or get comfortable due to the stabbing, nauseating pain. My husband took one look at me & took me back to the ER. There they did another ultrasound & CT-yup, a complex septated cyst! This time I was given morphine & Tramadol (after they tried giving me Motrin that I can’t take due to ulcerative colitis and my dogs rx of Tramadol showing up under my medication records-once I told them it was for my dog & they checked the second screen, he wrote the script).

Last week I finally saw a GYN. She told me I’m too high risk for removal and told me progesterone for 3 months was my option and she’d call it in. Of course with the war on drugs, nothing else was offered for pain. During my visit I told her I cannot tolerate birth control pills (and depo provera due to it causing incredible constant migraines). Needless to say, the med has yet to be called in even though the tech I checked out with said she’d call it in, I called to remind them the following day and left a message on their patient portal!

The pain woke me at 2 am this morning. Sitting here, I decided to do some research on what hormones are in depo provera and mini birth control pills...what do you know?! PROGESTERONE!! Why would I lie about not tolerating birth control hormones?! For crying out loud, I have two children 18 months apart due to that!

I am so frustrated that doctors have lost all sense of compassion and DO NOT LISTEN to patients! I’ve had a miserable Thanksgiving, Christmas and New Years due to this pain... If I hadn’t already been to the ER twice, I’d go-but what will they do? This is so exhausting!

I am planning on returning to my primary to request another referral for a second opinion. This is just exhausting and concerning since I just found out both of my grandmothers had ovarian cancer & one died at age 47 from it (I’ll be 43 in two weeks). I’m concerned about the pain...ignoring it could be something real bad! I’m no longer on pain meds going through a 100 count bottle of Tylenol in a month is another concern...

I have such severe pain that radiates to my groin that I’m glued to the couch. I actually limp it hurts so bad. I don’t experience back pain at all, thankfully. I’ve been using a heating pad & taking hot baths which help a tiny bit...

I just called my GYN again because waiting a week to hear back is ridiculous! The tech told me she sent the message to the doc and would remind her. A second opinion is sounding more & more like what I need to do. 😪

I am sorry things got so bad to land in ER but at least you got some help. Now, the kicker will be how your gyn handles this situation.

Good luck.

Ann:
Something about what you have been told about your CT scan findings seems confusing.

The adrenal gland is a small, walnut-sized gland. You have two adrenal glands, one sitting on the upper pole of each kidney. A 10.5 cm mass would equate to 5.25 inches. That would be a whopper of an adrenal mass.

Your ovaries sit in the lower pelvis, in the peritoneal cavity. The adrenal glands lie quite some distance removed from the ovaries - in location by the lower 12 rib in the flank/back area. The adrenal glands are in the retro-peritoneal space.

I cannot picture an adrenal mass, even a whopper 5.25 inch mass, encompassing an ovary. The organs are too far removed from one another.

You may want clarification of the CT findings.

The findings alone are worrisome for you, I am sure. I am sorry that you have been suffering for so long and, yet, being dismissed by physicians and emergency room. You gave voice to your symptoms and were not heard. Find some measure of peace knowing that you have now been vindicated.

I hope the physicians you encounter from this point forward treat you with the care and respect that you deserve.
Karen

Ann:
I did not pay close enough attention to your spelling “adnexal.” My mistake.

A 5.25 inch mass is a whopper. Little wonder you are in pain.

I am sending positive karma and a flotilla or lucky lady bugs your way. I hope things begin to improve for you now that you have an identified culprit.
Karen

Anna, if I remember right you were looking for a 2nd opinion with a gyno, were you able to do this?

Ann:
The wheels of medical care move with glacial speed.

I am sorry that you are still waiting for a call back from your GUN for pain relief. The physician:patient relationship is not evenly balanced.

Fingers crossed that you a prescription for something helpful,
Karen

Anna, not sure how long its been since you provided her with the second CT results, if is been over a week, I would be calling the office. That is more than ample time for her to review it.

I am sorry, but at the same time I am not surprised. So, my next question is this, what are her plans on taking care of this situation?

Ann:
A one to week wait for a CT scan seems excessily long.

Ct scans have become as ubiquitous as a flat plate x-ray. Physicians order CT scans as a matter or the ordinary. Why the one to two week delay?

A person can usually gain insurance pre-authorization for an appointment at a free standing imaging center (like Epic Imaging) if the local hospital schedule is full.

I am sorry that you are hurting as much as you are. I have had ongoing severe bone pain due to avascular necrosis for some time and have come to know the true GIFT that is even a smidgen of pain relief. I hope that your GYN or other member of your medical team will come to your aide.

We are here for you,
Karen