Frustrated (ovarian cyst)

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Annastazya
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Date Joined Feb 2017
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   Posted 1/2/2018 5:34 AM (GMT -7)   
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!

straydog
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Date Joined Feb 2003
Total Posts : 15534
   Posted 1/2/2018 6:40 AM (GMT -7)   
Anna, just a thought have you considered getting a 2nd opinion from a gyno? I do know how painful cysts can be. Getting a dr to prescribe anything for pain has become nearly impossible. ER's are notorious for telling patients up front we do not prescribe narcotics!!

I wish I could tell you something that would help, except consider getting another opinion. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/2/2018 6:48 AM (GMT -7)   
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...

pitmom
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   Posted 1/2/2018 1:04 PM (GMT -7)   
Way back when I was 'diagnosed' with an ovarian cyst...this being accomplished by emergency surgery...I was told to minimize caffeine, eat walnuts and take vitamin E supplements. I've been living with my ticking timebomb remaining ovary for 36 years by doing this.

As for the pain (which I get if I deviate from the above) I curl into a fetal position and have my shins on the bed with the heating pad weighted down on my curved back. I've been told the pain is from it rupturing and the 'free fluid' taking up space in that part of my body. Walking seems to help my body reabsorb the fluid. Hard to do when I can't even stand up straight, but as soon as I'm able, I'm walking.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, multiple wrist surgeries, multiple herniated discs, tarlov cysts, whiplash, bursitis of hips, grade 5 right shoulder separation and torn labrum, ovarian cysts, fibroid tumors of the uterus

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/2/2018 1:09 PM (GMT -7)   
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. 😪

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/3/2018 3:40 PM (GMT -7)   
Had a real bad night, doubled over with pain which is now radiating to my back. Was on the couch crying when my husband got up, he took one look at me & said we were going to the ER. This time we went to the ER right off base since he had to stop by his office.

The doc ordered an ultrasound but external only. What do you know, they couldn’t find my ovary! He came in and told me since it wasn’t seen that I had no cyst and the scan was normal... I spoke up and told him the only way it’s been visualized is with the internal ultrasound. He reluctantly ordered it and the cyst has quadrupled in size!! The ultrasound tech talked me through the exam, telling me how big the cyst was. She said it was one of the largest she’s seen that hasn’t resulted in torsion.

The doc appologized, told me since it’s a very large complex cyst with multiple septations that it needs to be removed because it is growing so fast. (Since I lost my other ovary to torsion from a large cyst)

He wants me seen tomorrow by GYN so I have a call in to mine, praying she will change her mind and do surgery!! He discharged me with an rx of Vicodin 10’s. I’m so thankful this doc listened once I spoke up!!

straydog
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Date Joined Feb 2003
Total Posts : 15534
   Posted 1/3/2018 4:15 PM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/11/2018 5:43 AM (GMT -7)   
Finally got my GYN to take me more serious once she finally received my most recent ultrasound report. In addition to a 5cm complex hemorrhagic septated ovarian cyst I have an adnexal mass even bigger (10.5cm) that’s encompassing my ovary so much it’s not even visible. The ER report thought the combination of both was one large cyst...

Awaiting authorization for a CT scan to see how serious the mass is. Meanwhile, I’m in an incredible amount of pain. I’m sleeping 3-4 hours per night being awoken by stabbing pain. I’m now experiencing problems with my bladder and bowel as well.

I’m going to call once the office opens & ask for something for pain (the 12 Vicodin given in the ER didn’t get me far) the worst she can say is no... In my opinion, suffering with an obvious growth in my abdomen that’s increased so much in 4 weeks should warrant something for pain! This current episode is not chronic & completely different than previous cysts I’ve had.

Thanks for listening to me vent!

(Seashell)
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Date Joined Dec 2012
Total Posts : 703
   Posted 1/11/2018 7:04 AM (GMT -7)   
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

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/11/2018 7:16 AM (GMT -7)   
Adnexal mass is a mass in the reproductive area, not to be confused with Adrenal masses. Hope that clears it up. 😜

(Seashell)
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Date Joined Dec 2012
Total Posts : 703
   Posted 1/11/2018 7:58 AM (GMT -7)   
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

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/11/2018 8:32 AM (GMT -7)   
Thank you Karen!! Gentle hugs!

straydog
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Date Joined Feb 2003
Total Posts : 15534
   Posted 1/11/2018 4:42 PM (GMT -7)   
Anna, if I remember right you were looking for a 2nd opinion with a gyno, were you able to do this?
Susie
Moderator in Chronic Pain & Psoriasis Forums

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/11/2018 6:47 PM (GMT -7)   
This is the initial GYN I saw...it took me seeing her twice and getting the 2nd ultrasound results for her to come around. I have a second opinion referral ready shall I need it once I get the CT & I know exactly what this mass is.

Just waiting on a call back to see if anything for pain will be prescribed, I doubt it, but it’s worth a shot. After all, a cyst along with the large mass are taking up so much space - one should understand why I’m hurting so much.

(Seashell)
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Date Joined Dec 2012
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   Posted 1/11/2018 8:02 PM (GMT -7)   
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

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/12/2018 4:52 AM (GMT -7)   
Karen, isn’t that the truth about the speed of medical care!? Slow as molasses!!

I’m trying to be patient but as we all know, when in never ending pain it’s very difficult! Especially since I’m now having low back pressure similar to back labor & bowel issues due to the mass pressing on my colon. I did manage to sleep 4 hours rather than the 2-3 I’ve recently been getting...

straydog
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Date Joined Feb 2003
Total Posts : 15534
   Posted 1/12/2018 10:09 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/12/2018 12:48 PM (GMT -7)   
She received the 2nd ultrasound earlier this week (not CT).

She just returned my call & nothing will be given for pain... I guess a 10” mass isn’t supposed to hurt. 🤷🏻‍♀️

straydog
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Date Joined Feb 2003
Total Posts : 15534
   Posted 1/12/2018 12:53 PM (GMT -7)   
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?
Susie
Moderator in Chronic Pain & Psoriasis Forums

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/12/2018 1:56 PM (GMT -7)   
I’ll find out when I get the CT which will be at the earliest late next week, more likely the following week; then we will know if surgery is necessary.

We are holding off on the Lupron shot until we get results.

Trying to not stress out. The pain has worsened and I’m beyond miserable.

(Seashell)
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Date Joined Dec 2012
Total Posts : 703
   Posted 1/12/2018 5:19 PM (GMT -7)   
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

Annastazya
Regular Member


Date Joined Feb 2017
Total Posts : 40
   Posted 1/12/2018 6:06 PM (GMT -7)   
My husband is active duty so we are dealing with Tricare; the servicing company switched Jan 1st so they are playing catch up.

My doc called me back & told me she’s not comfortable prescribing anything for pain...I’m dumbfounded. I have an obvious mass! I mean, a 10” mass is huge in the left lower quadrant of the abdomen for crying out loud, isn’t it obvious that it’d be painful?!

Trying to remain positive...
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