Hello all, I want to thank you in advance for taking the time to read this. This is my first time posting in such a forum so please bare with me.
I am a 29 yo female with a history of severe endometriosis, adenomyosis, and ovarian cysts. I have had 2 laprascopic surgeries to remove endometriosis lesions (2011 and 2014.) After my first laparoscopy I completed 3 months of Depo Lupron injections and became pregnant and delivered a healthy baby boy in 2012. Shortly thereafter I had the Mirena IUD inserted. Endometriosis symptoms returned and became serious enough requiring the second laparoscopy in 2014. I also had a small ovarian cyst (2cm) removed during surgery. GYN then placed me on an oral contraceptive to combat recurrent ovarian cysts.
Fast forward to May 2016. Pelvic pain has again reached a point where it is unbearable. I am certain I have an ovarian cyst and make an appointment. However this time, the symptoms were much different than I had ever experienced before. I was extremely bloated/distended and looked 6 months pregnant. No frequwncy in my urination, but when I had to go it was URGENT. I could hardly eat, but when I did I felt extremely full after just a few bites. The pain was predominantly on my left side around my ovary, but I was generally uncomfortable all over due to the bloating and gas. Transvag revealed an 8cm complex cyst with septations. I was sent for laparoscopy the same day to have the cyst removed. Dealt mainly with residents and was extremely frustrated with my care. Dr overseeing them had a lot of questions regarding family history with cancer. (Maternal aunt had early onset breast cancer, and several years later passed away from complications related to Acute Lymphoblastic Leukemia. My mother passed away from brain cancer in 2001.) I do not know any paternal family history. Anyways, the cyst was successfully removed and was benign. Aside from surgical complications leading to internal bleeding and an emergency lap the next day to remove blood that had pooled around my pancreas, the first lap was rather uneventful.
Sincer about 3 months after the insertion of Mirena, my menses ceased to exist. Fast forward now to July (2months post the May lap's) and out of nowhere I have a "period." It only lasted about 3 days and was really just moderate spotting at most. Cramps and pain were unbearable. Repeat in August like clockwork, as if I was having a normal cycle. Same moderate spotting. September comes around and I can FEEL my messes coming at the time of month it did before, horrible cramping, pelvic pain, back pain, change in bowel movements...but menses never comes. Symptoms persist, and feel very similar to early pregnancy. Nauseous, cramps, little to no appetite, feel overfull after eating, etc. Pain is relentless and becomes consistently worse. I make an appt with a GYN. He doesn't say much other than the strings to my IUD still cannot be found (they couldn't back in May either), but paired with my symptoms he is going straight to a laparoscopy to explore, and to remove the IUd surgically. This is the first time I have met his GYN and he was a man of VERY few words. Sent me home with pain medication and lap has been scheduled for Nov 10. He did make one comment during my visit that he reviewed notes from my May lap and that although they did remove the cyst, they "didn't really remove anything else." I have no idea what he meant by that .
Since that visit my pain is persistent and more often than not, much more severe. My ovaries literally feel like they are being squeezed and doused in acid. There's a general dull ache throughout my pelvis. The pain in my back is almost unbearable. A burning dull ache that feels as if it is radiating from somewhere deep within. Pain is worse when moving, or squatting/sitting with my legs up (my son is now 4...there's little time for rest.) A lot of times, for whatever reason, my ovaries hurt worse during urination. I am so miserable that when I do get a break I collapse on a heating pad on the couch and cry.
I just feel like something is being missed here, and my mind is a mess waiting for surgery and for answers. My appetite is hit or miss but I am never able to eat very much without feeling like I've eaten way too much. I do not have the bloating or distension that I had in May.
I just feel like I need to talk to real people who have lived/are living what has become a very big fear for me. What are your thoughts? I am so worried that something was missed during my May lap's.