The phone call came in August. The nurse on the line said my family doctor wanted to check to see if I had seen a Gynecologist yet and what they decided to do?
To my surprise, I questioned what she was talking about?
For over 6 months I was having extreme pain once a month that, would cause vicious vomiting. So, in January of 2016 I went to the ER. Having a history of kidney stones, I was told I had a small stone, but they also thought I was having Gallstones.
She had noted that they had called and left a message with my husband, who said I was “at college.” While I was not in college. I have a son that was in college and my husband works nights. So, we assume that he answered in his sleep.
The day of my Ultrasound the tech was quite rude. I have had many ultrasounds and this one stuck out because of her attitude.
She came out to get me and asked if I was having an ultrasound of an Ovary and a Mass. I told her I was unsure, because I have had my Ovaries removed.
She continued to treat me like I was lying. Several times during the ultrasound she said the Ovary is this and the Ovary is that. Like to point out that I had an Ovary. I was glad to be out of there and really couldn’t wait for the results.
I didn’t wait long, and my family doctor called and told me I did in fact have an ovary and that I had a mass on it. He explained that he had never seen anything like this, and I needed to go to my GYN ASAP.
Making that appointment was very interesting, because it was like I was telling some fish tail. You know the one. You caught a 7lb bass but by the time it makes its way through the grapevine you caught a great white shark.
At my appointment, I had another ultrasound. My wonderful G.Y.N. came in and we looked through my chart. My Oophorectomy (removal of ovaries) in 2012 did not go as planned. What was to be a 30-minute surgery for my GYN was a 4-hour surgery for her and my general surgeon.
There was an issue with my Ovary being attached to or wrapped around some of my bowel so they scraped as much as they could. I also had an abdomen full of adhesions.
She explained that in rare cases that if cells from the Ovary are left behind the Ovary can Regenerate and she had noted that she had to leave some or remove bowel. The name Ovarian Remnant Syndrome.
At this point because I have had this mass attached to it for over 13 months and it had grown a little, we had to watch it.
The Mass would fluctuate between appointments, but just enough to keep us on edge. In November of 2016 it hardened. This was where she became concerned. Hardening in a mass is a sign that it could be cancerous.
We decided to schedule the surgery before we left the office. It would take both surgeons schedules matching and we were headed into the holidays. So, we decided to watch it one more month.
The pain and the episodes were getting to be too much at this point. Each month I was barely getting through the episodes without a trip to the ER, the only thing that kept me going was prayer and knowing that she was watching it.
At my next appointment the mass had softened, and the doctor advised we were going to drive ourselves crazy. She informed me the risks because of my other health were high. I would walk out with a colostomy or maybe more. She decided to send me to a high risk GYN Specialist.
AT first he looked over everything and we watched it in his office for a few months. He felt I had more than one thing going on, so he gave me a shot straight through my abdomen for pain. That did help with the daily cramping I was having.
Yet, that once a month still hit like a Mack truck. My husband came up with the idea to start looking at the calendar and logging it at some point. We realized it was like clockwork, around the 20th give or take a day or two it happened. Just like a menstruation cycle. I even started logging mood swings and acne break outs. I was like puberty all over again.
We really felt it had to do with this, it had to! Again, I was made to feel like I was crazy.
The doctor decided that he would do surgery on me, due to my other health issues this was not going to be an easy surgery. He decided to start a monthly shot for 3 months. The medication is used mostly for men with prostate cancer and is a Chemotherapy drug. He would use it to take down inflammation before surgery.
When I lost my eyebrows while on this medication, this doctors office was very surprised. They told me they use it all the time and I was the first patient they have had to have this happen.
During this time, I had my yearly check up at my Women’s health clinic/cancer center (for my mastectomy) and this doctor confirmed that it is a common side effect of this Chemo drug. Not to mention I have Multiple Sclerosis and even if it wasn’t a common side effect that any doctor should expect that someone in my health and with my medications could have side effects not listed.
At my 3rd shot in June of 2018 they confirmed my surgery but wanted one last Ultrasound.
This is where my story gets laughable. During this appointment I was fatigued, and I wasn’t sure if it was my MS or the medication effecting my MS.
The nurse said to me. “When you get your ovaries removed, you are going to be fatigued all the time! So just wait.” Very sarcastic. I responded.” I already had my ovaries removed in 2012.” She looked at me like I was crazy and told me to wait a few moments.
Her and the doctor returned to advise me that they do not do surgery on Ovary Remnant and asked me why we started the Lupron shots in the first place.
He ordered the Ultrasound, but canceled my surgery.
I left there in tears. For over 2 years I had been going through this, come to find out it was a fluke that they even gave me the Lupron. Which I might add, My Rheumatologist said that I could not have more than 6 shots. I had 3. But Lupron causes thinning of the bones and osteoporosis. Which I already have bone issues.
What happened next will blow your socks off. Through these few years, my husband had brain surgery, I was going through all this. We had a prayer chain with our friends, family, and church. It was through the prayers that I feel my miracle happened.
I went to the ultrasound scared what if it was the same? What if it was bigger? What if the mass has hardened again? I held on to my faith it was all I had.
The ultrasound tech asked, “am I on the right side?” the order is to look at an ovary and mass and I can’t find one. I started bawling. She looked on the other side. I had at the previous ultrasound a small bit of O.R.S.. She advised “there is minimal amount of what looks like ovary on this side, but I don’t see anything else.” She asked to step out to have the radiologist compare my last films.
When she returned, she advised it was possible it was hiding behind bowel. My husband and I looked at her and the 3 of us knew that was not the case. For over 2 years it has been right there in your face.
I have read lots of horror stories from other women in my shoes. I don’t believe that my case is over. In fact, I have the look of an overdue pregnant woman. Everything in my gut (no pun intended) say’s it has to do with this condition.
You may be wondering about the episodes, the first month of the Lupron it was almost twice as severe. I happened to be in my husband’s semi, and it was the only time we have ever looked for a hospital on our route. The 2nd and 3rd month it got better and better and about 2-3 months after the shots I was not having them any longer. (when you look up effect’s of Lupron it says in print that symptoms may worsen the first month, this was the confirmation to us that this was what was causing these episodes.)
Every once in a while I will have an episode like that and like I said before it is much like a kidney stone, so I brush it off. I do know this.
While I was going through this my doctors thought that maybe I was perimenopausal or in menopause. They would take my TSH levels and at one time it would look as though I was in menopause. Then the next they would check it, and, in their words, it was like I was going through puberty again. So, this is not a medical opinion but just my thoughts. If I was going through this every month and that mass was going up and down and producing a bunch of hormones, then shutting down. That would cause anyone to vomit and have pain.
Finally, this condition is Rare, but more common today because of the use of Laparoscopic surgery. It is more common in ladies that have endometriosis or have had lots of surgeries.
If you are out there and had a Hysterectomy/Oophorectomy and are having any of these symptoms. Bloating, pain inside, pain in back, vomiting, pain with intercourse, pain with movement. You may want to have this checked out. I didn’t realize I was to continue my GYN appointments after I didn’t have any of the organs, so I waited a few years to long. So also keep that in mind.
As always you are your best advocate, if the ears your talking to don’t hear you. You have a choice to move on.
